Career Development and Work Experiences of Individuals with Cystic Fibrosis

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Title:
Career Development and Work Experiences of Individuals with Cystic Fibrosis a Grounded Theory Study
Physical Description:
1 online resource (190 p.)
Language:
english
Creator:
Saldana, Pablo S
Publisher:
University of Florida
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Gainesville, Fla.
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Thesis/Dissertation Information

Degree:
Doctorate ( Ph.D.)
Degree Grantor:
University of Florida
Degree Disciplines:
Rehabilitation Science
Committee Chair:
Pomeranz, Jamie Lee
Committee Members:
Young, Mary E
Repetto, Jeanne
Bendixen, Roxanna

Subjects

Subjects / Keywords:
cystic -- fibrosis
Rehabilitation Science -- Dissertations, Academic -- UF
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Rehabilitation Science thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

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Abstract:
Many qualitative studies have examined the lived experience of individuals with cystic fibrosis (CF) but the role of work and career development have previously received only cursory investigation. Individuals with CF are living into adulthood with a regularity that was unknown a generation ago. As a result, more people with CF are now entering the workforce. Despite the growing population of working adults with CF, little is known about their employment experiences and career development. This exploratory study utilized the grounded theory method of qualitative inquiry to investigate the employment implications of CF. The primary goal of the study is to achieve an understanding of the personal meaning of work to, and the employment experiences of, people with CF and ultimately develop a substantive grounded theory of career development applicable to individuals with this disease. The researcher utilized semi-structured qualitative interviews with ten participants to explore work experiences and career development processes. Analysis of the interview transcripts followed the constant comparative approach to coding, which identified core themes and sub-themes and culminated in a conceptual framework of variables influencing employment and career development. Additionally, in order to understand participants' career maturity and decision making, the researcher administered the Career Development Inventory (CDI) an 80-item instrument comprised of four scales (Career Planning, Career Exploration, Decision Making, and Knowledge of the World of Work). Four major themes and several sub-themes (1. individual characteristics age, altruism, gender, disease severity, illness appraisal, and persistence, 2. personal contextual factors, 3. mediating factors downplaying CF, occupational compromise and 4. workplace characteristics) that influence employment and career development were identified through analysis of the qualitative interviews. These themes were present for all participants, but specific experiences and outcomes varied by disease severity and gender. The ecological conceptual model that emerged from the present study proposes that work experiences and career development in individuals with CF are influenced by the interaction of certain individual characteristics, contextual factors, mediating factors, and environmental variables. The majority of participants reported balancing daily treatment demands and employment was difficult. While participants with worse disease also reported greater school and work interruptions. In light of these circumstances, participants utilized two types of coping strategies - downplaying CF and occupational compromises.
General Note:
In the series University of Florida Digital Collections.
General Note:
Includes vita.
Bibliography:
Includes bibliographical references.
Source of Description:
Description based on online resource; title from PDF title page.
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This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility:
by Pablo S Saldana.
Thesis:
Thesis (Ph.D.)--University of Florida, 2012.
Local:
Adviser: Pomeranz, Jamie Lee.
Electronic Access:
RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2014-05-31

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lcc - LD1780 2012
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UFE0043979:00001


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1 CAREER DEVELOPMENT AND WORK EXPERIENCES OF INDIVIDUALS WITH CYSTIC FIBROSIS : A GROUNDED THEORY STUDY By PABLO S. SALDANA A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2012

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2 2012 Pablo S. Saldana

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3 To my family and partner, you made this accomplishment possible To the participants in this study, thank you for allowing me into your world. You taught me so much.

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4 ACKNOWLEDGMENTS G reat endeavor s are not accomplished individually and this one was no different. I am thankful to so many individuals that helped me along this journey. First, I would like to thank my wonderful committee members for their guidance and support: Dr. Jamie Pomeranz (my chairperson), Dr. Roxanna Bendixen, Dr. Jeanne Repetto, and Dr. Mary Ellen Young. I am fortunate to have such an amazing dissertation committee and I am grateful to each of you for your time, advice, expertise, and patience I have learned so much from each of you and I thank you I would also like to express my apprecia tion to three other faculty members who helped me: Dr. Tracy E. Barnett, Dr. Barbara Lutz, and Dr. Michael Moorhouse. In your own way, you each supported and helped with this study I owe a debt of gratitude to the other essential parties to this undertak ing the study participants. Without your assistance, I would not have been completed this project I greatly appreciate your time and interest in this study. Additionally, I want to express thanks to Clinic in Jacks onville especially Helena Gutierrez Richards, Kirsten Most, Dr. Bonnie Hudak, Dr. Kathryn Kinyon Munch, Dr. Mary Belkin, and Dr. Eric Sandler. You encouraged me to go off and attempt this goal and promised I could return one day to apply all I learned. T hank you for allowing me the time to pursue this goal Finally I would like to acknowledge my family and partner for all their love and encouragement. Cusi, Marty, Carlie, Marlene, and Scott : I do not think I can ever completely express my gratitude. You kept me going when I was discouraged and I owe this accomplishment to you. Though m y father and grandmother did not live to see this day I felt their influence and encouragement throughout this journey Papi y

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5 abuela, espero que ustedes dos estan orgulloso de mi. (Dad and grandma, I hope you are both proud of me.)

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6 TABLE OF CONTENTS page ACKNOWLEDGMENTS ................................ ................................ ................................ .. 4 LIST OF TABLES ................................ ................................ ................................ .......... 10 LIST OF FIGURES ................................ ................................ ................................ ........ 11 LIST OF ABBREVIATIONS ................................ ................................ ........................... 12 ABSTRACT ................................ ................................ ................................ ................... 13 CHAPTER 1 INTRODUCTION ................................ ................................ ................................ .... 15 Background ................................ ................................ ................................ ............. 15 Pathophysiology of Cystic Fibrosis ................................ ................................ ......... 17 Disability Statisti cs: Prevalence, Employment Rate, and Earnings ......................... 19 Educational Achievement and Employment Outcomes ................................ .......... 22 Employment and Cystic Fibrosis ................................ ................................ ............. 23 Toward A Grounded Theory of Career Development with Cystic Fibrosis .............. 25 Theoretical Frameworks ................................ ................................ ......................... 26 Rationale for the Methodology ................................ ................................ ................ 26 Goal of the Research ................................ ................................ .............................. 27 Research Questions ................................ ................................ ............................... 27 Potential Contribution to Rehabilitation Theory and Practice ................................ .. 28 Summary ................................ ................................ ................................ ................ 29 2 LITERATURE REVIEW ................................ ................................ .......................... 30 Cystic Fibrosis and Employment ................................ ................................ ............. 30 Disease Severity and Em ployment ................................ ................................ ... 30 Specific Employment Considerations ................................ ............................... 34 Employment Rate and Occupation Type ................................ .......................... 35 Vocational Rehabilitation ................................ ................................ .................. 36 Employment and Health Relat ed Quality of Life ................................ ............... 37 Educational Achievement and Employment Outcomes ................................ .... 38 Disability and Employment Themes ................................ ................................ ........ 39 Transitioning to Adulthood and Employment ................................ .......................... 43 Vocational Rehabilitation and the Education System: Partners in Transition .......... 44 Career Development ................................ ................................ ............................... 48 Model s of Disablement ................................ ................................ ........................... 55 International Classification of Functioning, Disability, and Health ..................... 58 International Classification of Functioning Applied to CF ................................ .. 62 Emerging Adulthood ................................ ................................ ............................... 66

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7 Emerging Adulthood Applied to CF ................................ ................................ ......... 69 3 METHODOLOGY ................................ ................................ ................................ .... 74 Overview ................................ ................................ ................................ ................. 74 Qualitative Research ................................ ................................ ............................... 74 Grounded Theory ................................ ................................ ................................ .... 75 Sampl ing Strategies ................................ ................................ ................................ 78 Data Collection ................................ ................................ ................................ ....... 83 Data Analysis ................................ ................................ ................................ .......... 85 Data Interpretation ................................ ................................ ................................ .. 87 Goal of the Research ................................ ................................ .............................. 88 Research Questions ................................ ................................ ............................... 89 Methods ................................ ................................ ................................ .................. 89 Inclusion and Exclusion Criteria for Particip ants ................................ ..................... 89 Inclusion criteria ................................ ................................ ............................... 89 Exclusion criteria ................................ ................................ .............................. 90 Procedures ................................ ................................ ................................ ............. 90 Protection of Participants and Confidential ity ................................ ................... 90 Recruitment and Participants ................................ ................................ ........... 91 Instrumentation ................................ ................................ ................................ ....... 91 Interviews and the Use of an Interview Guide ................................ .................. 91 Career Development Inventory ................................ ................................ ......... 92 Data Analysis and Interpretation Procedures ................................ ................... 92 Reflexivity ................................ ................................ ................................ ............... 94 Personal Bias Statement ................................ ................................ ........................ 95 4 PARTICIPANT CASE HISTORIES ................................ ................................ ......... 98 Overview ................................ ................................ ................................ ................. 98 Participant Demographics ................................ ................................ ....................... 98 The Participants ................................ ................................ ................................ ...... 98 Ann ................................ ................................ ................................ ................... 98 Bob ................................ ................................ ................................ ................... 99 Chris ................................ ................................ ................................ ............... 100 Debbie ................................ ................................ ................................ ............ 101 Elsie ................................ ................................ ................................ ................ 102 Fred ................................ ................................ ................................ ................ 103 Grace ................................ ................................ ................................ .............. 103 Hal ................................ ................................ ................................ .................. 104 Ingrid ................................ ................................ ................................ .............. 104 Jackie ................................ ................................ ................................ ............. 105 Descriptive Attributes ................................ ................................ ............................ 106 5 FINDINGS ................................ ................................ ................................ ............. 108 Research Overview ................................ ................................ ............................... 108

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8 Career Development and Disability: An Ecological Approach ............................... 109 Ecological Model of Career Development in CF ................................ ................... 113 Individual Characteristics ................................ ................................ ...................... 113 Age, Gender, and Disease Severity ................................ ............................... 113 Altruism, Illness Appraisal, and Persistence ................................ ................... 115 Personal Contextual Factors ................................ ................................ ................. 118 ................................ ................................ ........................... 118 Education ................................ ................................ ................................ ....... 119 Health Care System Involvement ................................ ................................ ... 121 Treatment Burden ................................ ................................ .......................... 122 Mediating Factors ................................ ................................ ................................ 124 The Meaning of Work: Independence and Purpose ................................ ....... 124 Downplaying CF and Occupational Compromise ................................ ........... 127 The World of Work Environment ................................ ................................ ........... 129 Employer and Co worker Support ................................ ................................ .. 129 Disease Disclosure ................................ ................................ ......................... 130 Workplace Concerns ................................ ................................ ...................... 132 Outcome Employment/Career Patterns ................................ ............................. 133 Grounded Theory of Career Development in CF ................................ .................. 134 International Classification of Functioning, Disability, and Health ......................... 136 6 CAREER DEVELOPMENT INVENTORY ................................ ............................. 137 CDI Results ................................ ................................ ................................ ........... 138 Ann ................................ ................................ ................................ ................. 139 Bob ................................ ................................ ................................ ................. 139 Debbie ................................ ................................ ................................ ............ 140 Fred ................................ ................................ ................................ ................ 141 Grace ................................ ................................ ................................ .............. 141 Hal ................................ ................................ ................................ .................. 142 Ingrid ................................ ................................ ................................ .............. 142 Jacki e ................................ ................................ ................................ ............. 143 Summary ................................ ................................ ................................ .............. 143 7 C O N CLUSIONS ................................ ................................ ................................ ... 145 Overview ................................ ................................ ................................ ............... 145 Summary of Findings ................................ ................................ ............................ 145 Findings Regarding the Meaning of Work ................................ ...................... 146 Findings Regarding the Career Development Inventory ................................ 147 Findings Regarding Career Development ................................ ...................... 148 Grounded Theory of Career Development in CF ................................ ............ 150 Limitations of this Study ................................ ................................ ........................ 151 Implications for Service Providers ................................ ................................ ......... 153 Recommendations for Future Research ................................ ............................... 154 Conclusion ................................ ................................ ................................ ............ 155

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9 APPENDIX A INTERVIEW GUIDE ................................ ................................ .............................. 157 B INFORMED CONSENT FORM ................................ ................................ ............. 159 C DEMOGRAPHIC INFORMATION SHEET ................................ ............................ 167 LIST OF REFERENCES ................................ ................................ ............................. 168 BIOGRAPHICAL SKETCH ................................ ................................ .......................... 190

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10 LIST OF TABLES Table page 3 1 Typology of purposeful sampling strategies ................................ ........................ 83 4 1 Partic ipant demographics ................................ ................................ ................. 107 6 1 CDI terms and descriptions ................................ ................................ .............. 138 6 2 CDI results by participant ................................ ................................ .................. 139

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11 LIST OF FIGURES Figure page 2 1 The ICF framework and cystic fibrosis ................................ ................................ 64 5 1 Conceptual Model: Key factors that influence work experiences and career development in individuals with cystic fibrosis ................................ ....... 112

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12 LIST OF ABBREVIATION S CF Cystic Fibrosis FEV 1 Forced Expiratory Volume in 1 S econd ICF International Classification of Functioning, Disability, and Health VR Vocational Rehabilitation WD Work Disability

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13 Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy CAREER DEVELOPMENT AND WORK EXPERIENCES OF INDIV IDUALS WITH CYSTIC FIBROSIS: A GROUNDED THEORY STUDY By Pablo S. Saldana May 2012 Chair: Jamie L. Pomeranz Major: Rehabilitation Science Many qualitative studies have examined the lived experience of individuals with cystic fibrosis (CF) but the role of work and career development have previously received only cursory investigation. Individuals with CF are living into adulthood with a regu larity that was unknown a generation ago. As a result, more people with CF are now entering the workforce. Despite the growing population of working adults with CF, little is known about their employment experiences and career development. This explorat ory study utilized the grounded theory method of qualitative inquiry to investigate the employment implications of CF. The primary goal of the study is to achieve an understanding of the personal meaning of work to, and the employment experiences of, peop le with CF and ultimately develop a substantive grounded theory of career development applicable to individuals with this disease. The researcher utilized semi structured qualitative interviews with ten participants to explore work experiences and career d evelopment processes. Analysis of the interview transcripts followed the constant comparative approach to coding, which identified core themes and sub themes and culminated in a conceptual framework of variables influencing employment and career developme nt. Additionally, in order to

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14 administered the Career Development Inventory (CDI) an 80 item instrument comprised of four scales (Career Planning, Career Exploration, Decision Ma king, and Kn owledge of the World of Work). Four major themes and several sub themes (1. individual characteristics [age, altruism, gender, disease severity, illness appraisal, and persistence], 2. personal contextual factors, 3. mediating factors [downplay ing CF, occupational compromise] and 4. workplace characteristics) that influence employment and career development were identified through analysis of the qualitative interviews. These themes were present for all participants, but specific experiences an d outcomes varied b y disease severity and gender. The ecological conceptual model that emerged from the present study proposes that work experiences and career development in individuals with CF are influenced by the interaction of certain individual chara cteristics, contextual factors, mediating factors, and environmental variables. The majority of participants reported balancing daily treatment demands and employment was difficult. While participants with worse disease also reported greater school and w ork interruptions. In light of these circumstances, participants utilized two types of coping strategies downplaying CF and occupational compromises.

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15 CHAPTER 1 INTRODUCTION Background Cystic fibrosis ( CF ) is an incurable, life limiting, genetic disorder with multiple organ involvement that primarily affects the respiratory, gastrointestinal, and reproductive systems of the body (Cystic Fibrosis Foundation, 2011) Physical manifestations and emotional complications of CF represent numerous theorized barriers to optimal career and employment outcomes (Bevelaqua & Adams, 1993; Falvo, 2005; Gille n, Lallas, Brown, Yelin, & Blanc, 1995; Goldberg, Isralsky, & Shwachman, 1985) Nonetheless, minimal empirical research has been conducted on career development issues and employment experiences in individuals with CF (Burker, Sedway, Carone, T rombley, & Yeatts, 2005; Gillen et al. 1995) Individuals with CF are living into adulthood with a regularity that was unknown a generation ago hence; many are now joining the workforce In 1969, the median predicted survival age in CF was 14 years. By 1985, the m edian predicted survival had reached 26 years and by 2010 the median predicted a ge of survival had climbed to 38.3 years ( Cystic Fibrosis Foundation, 2012 ) These gains in longevity are attributed to improvements in nutritional and pulmonary therapies an d the establishment of specialized CF treatment centers (Kulich, Rosenfeld, Goss, & Wilmott, 2003) Due to the ongoing increase in life expectancy, a child born in the year 2000 would be expected to survive approximately 50 years (Dodge, Lewis, Stanton, & Wilsher, 2007; Elborn, Shale, & Britton, 1991) Increasing survival sustains the prospects for achieving independence and employment. As survival rates improve, the population of adults with CF is growing and they are entering the workforce. The Cystic Fibrosis Foundation

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16 reported that of the 26, 27 2 total patients living with CF in 2010, 12,479 were adults and of them 45 % maintained full time or part time employment. Mortality in CF is improving significantly; nevertheless, morbidity is high due to the progressive course of the disease (Ernst, Johns on, & Stark, 2010; Ferkol, Ro senfeld, & Milla, 2006; Sanders et al., 2010; Yankaskas, Marshall, Sufian, Simon, & Rodman, 2004) According to the National Heart, Lung, and Blood Institute, in 2006, CF patients averaged six physician office visits and there were 11,000 hospitalizations with an average length of stay of 9.5 days (National Heart, Lung, and Blood Institute, 2009) In addition, individuals with CF have recurrent pulmonary exacerbations (Cystic Fibrosis Foundation, 2011) These episodes are characterized by a temporary deterioration of lung function evidenced by infection, increased cough and sputum production, a drop in lung function and/or weight loss (Cystic Fibrosis Foundation, 2011) Additionally, the CF Foundation (2011) reports that in 2009 the mean predicted lung function of ad ults with CF was 64.6% indicating moderate disease severity. Finally people with CF shoulder an onerous daily treatment burden that requires a large amount of time (Ziaian et al., 2006) Specifically, CF management requires a complex and time consuming daily treatment regimen of airway clearance therapy, nebulized breath ing treatments of antibiotics and mucolytic agents, numerous oral medications to treat pulmonary and digestive complications (pancreatic enzymes, vitamins, and antibiotics), dietary supplement drinks, and large meals and snacks (Ziaian et al., 2006; Zindan i, Streetman, Streetman, & Nasr, 2006) escalates with increasing disease severity (Zindani et al. 2006)

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17 In addition to the biological sequelae of the disease, emerging adults with CF face numerous psychosocial challenges while entering the workforce (Abbott & Gee, 1998; Ernst et al. 2010) Several studies have documented higher rates of anxiety and depression in people with CF over the general population (Cruz, Marciel, Quittner, & Schechter, 2009 ; Modi, Driscoll, Montag Leifling, & Acton, 2011; Quittner, Barker, Snell, Grimley, Marciel, & Cruz, 2008) Furthermore, diminished health related quality of life in people with CF is also well documented (Britto, Kotagal, Hornung, Atherton, Tsevat, & Wil mott, 2002; Gee, Abbott, Conway, Etherington, & Webb, 2003; Havermans, Colpaert, Vanharen, & Dupont, 2009; Hogg, Braithwaite, Bailey, Kotsimbos, & Wilson, 2007; Wahl, Rustoen, Hanestad, Gjengedal, & Moum, 2005) Emerging adults with CF face a complicated j ourney entering the workplace. En route to achieving employment, they balance competing demands Specifically they manage disease self care along with family, social and academic obligations and the maturational process of moving from the dependency of adolescence to the independence of adulthood. Furthermore, while navigating towards adulthood, they must traverse complex healthcare, insurance, and educational systems, while making crucial career decisions. This constellation treatment burden, pulmo nary exacerbati ons, frequent clinic visits, hospitalizations and psychosocial concerns may have consequences for career development and gaining and maintaining employment in emerging adults with CF and accordingly warrants further investigation. Pathoph ysiology of Cystic Fibrosis CF is the most common fatal, inherited genetic disease in the United States affecting approximately 30,000 individuals and about one in every 3500 births each year (Cystic Fibrosis Foundation, 2011 ) In most cases of CF, a mutation of the delta F508

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18 gene causes abnormalities in electrolytes and the exocrine glands leading to mucus plugs in the bronchial tree, chronic recurrent pulmonary infections, and digestive disorders such as pancreatic insufficiency (Braekeleer, Bellis, Rault, Allard, Milot, & Simard, 2001) Other complications associated with CF include diabetes, intestinal obstructions, cirrhosis, hemoptysis, and pneumothorax (Cystic Fibrosis Foundation, 2 009) CF causes thick mucus to build up in the pulmonary and digestive systems of the body. In the lungs these mucus plugs cause infections which contribute to lung deterioration. The chief treatment procedures for respiratory complications are nebulize d medications that thin the mucus, airway clearance therapies to expel mucus from the lungs, and antibiotics to treat bacterial infections (Yankaskas et al. 2004) The digestive complications associated with CF, which result from pancreatic insufficiency, leave individuals unable to absorb nutrients from their food intake, and often result in severe malnutrition. Digestive complications are treated with replacement pancreatic enzymes taken with each meal, increased calorie intake, oral supplement drinks, enteral nutrition, and vitamin supplementation (DeLambo, Ievers Landis, Drotar, & Quittner, 2004; Dodge & Turck, 2006; Yankaskas et al. 2004) The course of the disease has many variations, which eventually lead to death, with chronic lung infections acco unting for the majority of morbidity and mortality (DeLambo et al. 2004; Ratjen & Doring, 2003) Given the multiple organ systems associated with CF, it requires ongoing intensive medical management for life (Yankaskas et al. 2004) There is presently no cure but with advances in treatment, the survival of patients with CF is improving and what was once a childhood disease now affects adults who have a life expectancy of nearly 36 years (Cystic Fibrosis Foundation, 2011)

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19 Disability Statistics: Prevalen ce Employment Rate, and Earnings The United States has a large number of individuals with disabilities. In the December 2008 Current Population Reports, 291.1 million people in the 2005 population of the United States, 54.4 million, or 18.7 percent, reported some level of disability, and 35 million (12.0 percent of all people) (Brault, 2008, p. 3) A severe disability is one that interferes with everyday activities, makes it challenging to maintain employment, and renders the person unable to perform or needing help with functional activities (Brault, 2008) Individuals with disabilities are less likely to be employed than their nondisabled peers. The Bureau of Labor Sta tistics reported that the work force participation rate, which is the share of the population working, was 20.9% in 2011 for people with disabilities In comparison, the percentage of persons with no di sability in the labor for ce was 6 9 7 % (United States Department of Labor, 2012) In addition, the unemployment rate for people with disabilities in January 2012 was higher than fo r persons with no disability 12.9% versu s 8.7 % (United States Department of Labor, 2012) What this represents for people with disabilities is a loss of income, and more importantly, a loss of socia l and economic participation. Disability statistics compiled by the 2 008 American Community Survey further demonstrate the disparities in employment experienced by individuals with disabilities. Among youth ages 16 20 with a disability, an estimated 26.4% were employed versus an employment rate of 41.2% for those without a disability (Erickson, Lee, & von Schrader, 2008) For adults with disabilities the inequalities in employment are even

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20 more pronounced in 2008, an estimated 39.5% of individuals ages 21 64 were employed compared to 79.9% wi thout a disability (Erickson et al. 2008) According to a report by the Center for Economic and Policy Research (2009), the poverty rate for people with disabilities is two to three times higher than for the non disabled population. A disability can resu lt in income poverty because of unemployment/underemployment, employment discrimination, lack of advancement opportunities, reduced earnings, and barriers in education and skill development (Fremstad, 2009) Moreover, income poverty can limit access to health care and preventive medicine and increases the chances that one will live in an environment that adversely affects health status (Fremstad, 2009) Additionally, people with disabilities experience workplace discrimination The report encountering at least one instance of discrimination in the workplace due to their (Frieden, 2003) The majorit y of allegations of discriminatory behaviors relate to personnel actions pertaining to discharge, reasonable accommodation, employment terms and conditions, disability harassment, hiring, and discipline not to acquiring employment (McMahon & Shaw, 2005) In the period from July 26, 1992, the effective date of the Americans with Disabilities Act (ADA), to 2003 over 600,000 allegations of discrimination were filed with the Equal Employment Opportunity Commission under Title I of the ADA (McMahon, Edwards, Rumrill, & Hursh, 2005) Workplace discrimination makes it more likely that a person with a disability will terminate their employment (Fong, McMahon, Cheing, Rosenthal, & Bezyak, 2005; McMahon & Shaw, 2005)

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21 Having a disabil ity places emerging adults at a serious disadvantage in the workforce and thereby jeopardizes participation in society and the ability for independent living. Carter et al. (2010, p. 195) asiveness and persistence of disappointing post school employment outcomes for young adults with researchers. O'Day and Stapleton (2009) have reported on declining employment rates for youth with disabilities 57.5% to 40.9% during the period of 1989 to 2000 when the economy was growing Data about youth with disabilities obtained by the National Longitudinal Transition Study 2 also d emonstrate slight declines in employment from 62% in 1990 to 56% in 2005 (Newman, Wagner, Cameto, Knokey, & Shaver, 2010) Obtainin a milestone and rite of passage for youth in the United States (Blomquist, 2006; Csikszentmihalyi & Schneider, 2000) More importantly, e mployment is a common experience during adolescence (Kelloway & Barling, 1999; Wagner, Newman, Cameto, Garza, & Levine, 2005) which serves many valuable functions in preparing for adulthood. Rogan, Grossi, and Gajewski (2002) observed, income, enhances self esteem, provides important social connections, and allows people to fulfill their duties as contributing, tax (p. 104) Early employment opportunities expose young people to the world of work and potential careers while they build confidence learn skills and earn income. Moreover, the early work experiences of adolescence contribute to favorable long term employment outcomes in adulthood (O'Day, Stapleton, & Mathematica Policy Research, Inc., 2009) Students with disabilities who lack this experience may encounter lifelong

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22 unemployment, underemployment, or lowered expectations (Carter et al., 2010) Likewise, they also have less knowledge of job responsibilities, inaccurately appraise their skills and qualif ications, and experience trouble making career decisions (Ochs & Roessler, 2001) Among high school students without disabilities, approximately 80% report holding a job at some point during their high school tenure (Cameto, Ma rder, Wagner, & Cardoso, 2003) Conversely students with disabilities face obstacles obtaining work and are employed at half the rate of their non disabled peers (Wagner, Cadwallader, & Marder, 2003) Emerging adults with disabilities face significant disadvatages in the labor market and this may also extend to the population with CF who may face an uncertain path to employment and career success. Educational Achievement and Employment Outcomes aged 6 to 17 have a special health care need (Bethell, Read, Blumberg, & Newacheck, 2008) and 6.5% of children experience a degree of illness sev erity sufficient to interfere with school activities (Shaw & McCabe, 2008) Thus, youth with chronic illnesses are at elevated risk for poor academic outcomes (Dworkin, 1989; Fowler, Johnson, & Atkinson, 1985; Shaw & McCabe, 2 008) The annual high school completion rate for students with disabilities surveyed by the National Longitudinal Transition Study (NLTS) was 72% (Newman, Wagner, Cameto, & Knokey, 2009) Specifically, poor grades and standardized test scores signify low er academic performance and subsequently educational achievement is undermined by lower motivation to do well in school, disruptive behaviors, and frequently being bullied (Forrest, Bevans, Riley, Crespo, & Louis, 2011) The percentage of students with di sabilities completing college reported

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23 by the NLTS survey was just 29% (Newman et al. 2009) The 71% of students with disabilities who did not complete degree requirements cited reasons including poor grades, expense, not liking school, health demands, t ransportation problems, and not getting needed services (Newman et al. 2009) The majority of school age children with CF have few or no hospitalizations or exacerbations however school absence is a concern because of illnesses related to lung infections (DePaepe, Garrison Kane, & Doelling, 2002; Strawhacker & Wellendorf, 2004) One study (Wildhagen et al., 1996) reported that children with CF were absent an average 19.5 school days per year. Educational achievement for students with disabilities is significant because it is associated with positive employment outcomes for emerging adults seeking their first jobs (Achterberg, Wind, de Boer, & Frings Dresen, 2009) Some researchers have even posited that postsecondary education is now a necessary step towards employment in the information age (Carnevale & Desrochers, 2003; Frieden, 200 3; Gilm ore, Bose, & Hart, 2001; Newman et al. 2010) Employment and Cystic Fibrosis Many studies have examined the lived experience of CF but career development and the role of work has received only cursory investigation. There is insufficient research in the area of CF and its employment implications (Burker et al. 2005; Demars, Uluer & Sawicki, 2010; Gillen et al. 1995) Extensive searching of electronic databases uncovered ten studies related to CF and employment conducted in the last thirt y year s. However, none of the studies explored career development, the meaning or experience of work or the practical em ployment implications of CF and thus have occupatio nal pursuits. Rather, the majority of the studies investigated diverse medical

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24 aspects of the disease that contribute to work disability. The results of the studies must be cautiously interpreted as sample sizes were small and in each case, the research was conducted at just one o r two CF centers. A number of studies offered guidance as to the role of pulmonary function, expressed as forced expiratory volume in 1 second or FEV 1 in work disability. The results are mixed. Three reports showed that FEV 1 w as not predictive of work disability as individuals with CF were working in spite of poor lung function. While two studies demonstrated, that FEV 1 does play a significant role. Regardless it is evident that people with significant lung damage continue to work. There is much variability in symptoms experienced by individuals with CF and disease severity alone does not predict employment outcomes. Important factors to consider are the presence or absence of depression, frequency of hospital admissions, educational level, type of work, a nd the number of hours worked. Wo rk also has a positive effect on quality of life. Two studies examined health related quality of life and both demonstrated better quality of life in working individuals. These findings a re consistent with several studies (Eggleton, Robertson, Ryan, & Kober, 1999; Leduc & Lepage, 2002; Mickelson, Bolund, & Brandberg, 2001; Miller & Dishon, 2006; Phillips & Stuifbergen, 2006) that indicate health related quality of life is greater when one is employed The existing employment research in CF is limited in quantity and scope This body of work focused on predicting work disability, employment rates, vocational rehabilitation, and health rela ted quality of life however excluded work experience s,

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25 career development and the meaning of work. Moreover, the existing studies largely quantified rather than qualified th e experience of work. Employment is a goal for many with CF and no single factor accounts for employment success or failure (Goldberg et al. 1985; Mungle, Burker, & Yankaskas, 2002) The overarching conclusion is that emerging adults with CF have the desire or intention to work. Along their path to employment, they sometimes encounter barriers related to sequelae of their illness. A side from managing the demands of the disease as they mature they attend to typical responsibilities, getting around the community, financial independence, making friends, sexuality and self (Wehman, 2001, p. 8) With assistance from parents, school personnel, health care and community resources, they ca n be successful in these areas. Toward A Grounded Theory of Career Development with Cystic Fibrosis Little is know n about the employment experiences of people with CF and its effects on career development. Specifically, the career development of individuals with CF was investigated in just one long ago study (Goldberg, Isralsky, & Shwachman, 1979) Despite a vast body of career development literature, individuals with disabilities are typically overlooked (Conte 1983; Curnow, 1989; Szymanski et al. 2003) The majority of the extant career development research was conducted with healthy nondisabled individuals an (Szymanski et al. 2003, p. 92) Furthermore, there is not a generally accepted model of career development pertaining to people with disabilities (Goldberg, 1992)

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26 Theoretical Fram eworks In order to understand and address the unique employment context of individuals with CF, two theoretical frameworks were relevant one that places CF within the milieu of a disability framework and one for conceptualizing the particular development al stage o f emerging adults with CF. I adopt ed the International Classification of Functioning, Disability, and Health (ICF) (World Health Organization, 2001) and the emerging adulthood model (Arnett, 2000; Arnett, 2004) as g uiding theoretical frameworks. The World Health Organization (2001) framework, the International Classification of Functioning, Disability, and Health (ICF), is a classificatio n system for the description of health and health related states that provides a lens by which to understand functioning and disability (De Kleijn De Vrankrijker, 2003; Stucki & Rauch, 2010) The ICF provides a contex t for determining the influence of CF on career development and employment. The is theoretical framework from which to evaluate and understand the co occurring maturational and employment processes of young adults with CF Emerging adulthood is a new developmental stage posited by Arnett (2000; 2004) that bridges the period between adolescence and young adulthood. These two frameworks in tandem provide d a basis from wh ich to examine employment within the context of CF. Rationale for the Methodology In keeping with the exploratory nature of the study, the method used wa s grounded th eory. This qualitative method wa s most appropriate to this area of research, as no theory exists to explain how emerging adults with CF experience work, make career decisions and construct the personal meaning of work as they mature. This method allowed for the complexities associated with CF and employment to be

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27 better understood through th e development of a substantive theory generated from the very experiences of emerging adults with CF. The study employ ed the grounded theory method of qualitative inquiry to gain a deep and rich understanding about the personal meaning of work to, and the (Richards & Morse, 2007, p. 59) and so there is congruence between the method and the social situ ation of employment. Grounded theory was adopted because it allowed for the thorough examination of this topic from the viewpoint of the individual my intention being to compile a thick description of the lived experience of CF and its employment aspects Bowers (1988) individual with CF who can best define what the truths are pertaining to employment. Goal of the Research The primary goal of the study wa s to conduct grounded theory research that results in an understanding of the personal meaning of work to, and the employment experiences of, people with CF and ultimately a substantive grounded theory of career development applicable to individuals with this disease Research Questions The purpose of the proposed study is to answer these research questions f or a sample of emerging adults with CF : 1. W hat is the personal meaning of work? 2. How has the illness influenced their employment choices and aspirations? 3. What are their lived experiences in the workplace? 4. What is t he career development process?

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28 The specific aims of the study were four fold : (a) to gain a dee p understandin g about the meaning of work to emerging adults with CF (b) to give voice to emerging adults with CF to discover how the illness has influenced their employment aspirations (c) to identify, describe and analyze the employment experiences of emerging adults with CF and (d ) to identify, describe and analyze the process of career development in emerging adults with CF. Potential Contribution to Rehabilitation Theory and Practice Just one study to date has examined career development (Goldberg et al. 1979) and no studies have investigated the work experiences of individuals with CF. The shortage of voca tional literature in CF presented an opportunity for further research on the personal meaning of work, on barriers and facilitators of employm ent and career development in the context of CF The current cohort of emerging adults with CF were born at a time when the predicted median survival age was approximately 26 years (Cystic Fibrosis Foundation, 1997) and life prolonging treatments were yet to be discovered thus the prospect of reaching adulthood and attaining employment was not widely considered achievable Increasing longevity sustains the prospect of entering the workforce. Understanding the inter play of CF and employment informs the rehabilitation knowledge base and is essential in order for rehabilitation counselors to deliver vocational services. Furthermore, k nowledge regarding employment implications would allow rehabilitation and medical pro fessionals, educators, and employers to help individuals with CF overcome obstacles and fac ilitate successful employment.

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29 Summary People with disabilities would like to obtain jobs that meet their needs and are suited to their talents, and, like everyone else, they would like to secure promotions and (Feldblum, 1991, p. 82) Likewise, there is no reason to presume that emerging adults with CF do not place the same value on work as others, however they could face an uncertain path to employment and career success. Their route is complicated by several factors including: unpredictable disease exacerbations and sequela, a heavy treatment burden, the rigourous demands of treatment adherence, and psy chosocial challenges relate d to having a chronic illness.

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30 CHAPTER 2 LITERATURE REVIEW Cystic Fibrosis and Employment Cystic fibrosis and its employment consequences have received little attention within the literature (Burker et al. 2005; Demars et al. 2010) An extensive s earch of electronic databases dis covered just 10 research related journal articles pertaining to CF and employment were published between 1979 and 2010. The majority of these reports investigated diverse medical aspects of CF that c ontribute to work disability (WD). N one revealed any universally accepted methods of determining vocational capacity or identified employment barriers and facilitators. Additionally, investigations regarding the employment experiences of people with CF a nd its effects on career development are nonexistent. Disease Severity and Employment One often quoted marker of WD is lung function (expressed as FEV 1 ). Lung function is quantified by the pulmonary function test and is one measure of disease severity often cited within the literature. The CF Foundation issued these guidelines for evaluating lung function: 1 1 the more severe the lung disease. An FEV 1 greater than or equal to 90 percent is normal. An FEV 1 between 70 and 89 percent means mild lung disease. An FEV 1 between 40 and 69 percent indicates moderate lung disease. If the FEV 1 is less than 40 percent, severe lung disease is pr esent. (Cystic Fibrosis Foundation, 2009, p. 9) The results of studies using FEV 1 as a marker of WD are mixed. Six studies (Burker, Sedway, & Carone 2004; Frango lias, Holloway, Vedal, & Wilcox 2003; Gillen et al., 199 5; Havermans et al., 2009; Goldberg et al., 1985 and Hogg et al., 2007)

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31 examined the influence of lung function and other predictors of WD on employment status. Three of the six reports examined disease severity alone as a predictor for em ployment status. Burker et al. (2004) Frango lias, Holloway, Vedal, & Wilcox (2003) and Hogg et al. (2007) used FEV 1 as a proxy for disease severity and found that moderate to severe lung diseas e was not a strong predictor of whether one would be employ ed. For example, Burker et al. (2004) found no difference between FEV 1 of working and non working groups within a sample of 183 individuals with CF (32.4% versus 32.1% respectively). Instead of FEV 1 elevated depressive symptoms, education level, and optimism had greater influence on determining WD. Burker et al. (2004) found that those who were not working had clinically elevated scores on the Beck Depres sion Inventory while those who were working had lower depression scor es. Furthermore, Burker et al. (2004) reported that the education level wa s lower in those not working. Frangolias et al. (2003) noted that FEV 1 res ults were similar for both employed and unemployed subjects. This study was conducted to determine if the combination of pulmonary function testing and exercise testing were better predictors of work/school status than pulmonary function tests alone. In this sample, the mean FEV 1 was 53.4%. The authors concluded that although FEV 1 was useful in detecting severity of impairment, this measure does not have clinical utility for predicting work status. Specifically, the authors reported it was difficult to control for degrees of impairment as the range of patients who were working had a disease severity ranging from mild to severe. The authors further reported that the lower range of disease severity (FEV 1 < 40% predicted) poorly discriminates between worki ng and non working individuals.

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32 Hogg et al. (2007) reported a mean FEV 1 of 51.8% in their sample of adults with CF yet they observed that neither the FEV 1 nor the S K score (another measure of lung function) reliably determined disability. Rather, age, f requency of hospitalizations, and disease mastery (a feeling of control over the disease) were better determinants of disability as defined by work partici pation. Two reports, Gillen et al. (1995) and Havermans et al. (2009) presented opposing conclusions regarding the predictive power of FEV 1 o n WD Gillen e t al. (1995) reported the mean FEV 1 for the studied sample was 51%. The authors reported that disease severity was associated with WD but added that other factors w ere also significant. In addition to FEV 1 Gillen et al. (1995) noted that being diagnosed as an adult, being female, and being single contributed to WD. Havermans et al. (2009) reported a mean FEV 1 of 65.09% for the sample. They found that FEV 1 was sig nificantly lower in p atients who were not working. Goldberg et al. (1985) used another measure, the S K score, as a proxy for severity of illness. The authors reported that disease severity was not significantly correlated with work status or vocational d evelopment. However, they did find that disease severity was negatively correlated with educational status. In this study, more severe illness indicated a greater chance of derailing educ ational plans. Isralsky et al. (1979) also using the S K scoring system to evaluate disease severity, made the assertion that disease severity was not associated with developing vocational plans. The authors found that youth with more or less severe disease did not have diffic ulty setting vocational goals.

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33 Studies by Burker et al. (2004), Gillen et al. (1995), and Hogg et al. (2007) indicate that variables other than FEV 1 for example frequency of hospital admissions, demographic variables, menta l health, and education level, have greater influence on employment status. Burker et al. (2004) found that those who were not working had clinically elevated scores on the Beck Depression Inventory while those who did work had lower depression scor es. F urthermore, Burker et al. (2004) reported a higher education level among those who were working a s opposed to those unemployed. Gillen et al. (1995) reported that certain characteristics (being diagnosed as an adult, female gender, and marital status) cons iderably influenced WD The authors found that these three variables where individually statistically significant risk factors contributing to WD Additionally, when added to a model of disease severity featuring FEV 1 S K score, and hospitalization freq uency, the inclusion of the demographic variables enhanced the e xplanatory power of the model. Hogg et al. age, disease mastery (feeling in control over the illness), and frequency of hospi talizations. The authors reported that there was not a significant relationship between working and FEV 1 S K score, or gender. Work status depended on frequency of hospitalizations and quality of life domains (mastery of illness, dyspnea, fatigue, emoti onal functioning, and overall quality of life score). Based on this body of literature it is evident that individuals with CF and significant lung damage continue to work. There is much variability in symptoms experienced by individuals with CF and diseas e severity alone does not predict employment outcomes. Other important factors to consider are family support, employer and coworker support,

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34 the presence or absence of depression, frequency of hospital admissions, educational level, type of work, a nd the number of hours worked. Specific Employment Considerations The extant literature suggests that individuals with CF place the same value on work as their healthy peers (Goldberg et al. 1979) however, given the progressive disease process and symptoms th ey could face an uncertain path to employment and career success. Physical manifestations and emotional complications of CF denote numerous theorized barriers to optimal career and employment outcomes (Bevelaqua & A dams, 1993; Falvo, 2005; Gillen et al. 1995; Goldbe rg et al. 1985) CF imparts a unique set of conditions that may influence choosing, getting, and keeping employment but these are not well researched (Gillen et al. 1995; Mungl e et al. 2002) The route to employment is complicated by several factors including: unpredictable disease exacerbations and sequela, disclosure to employers, managing the complex treatment regimen while working, managing symptoms at work (for example, coughing spells and bowel problems), freque nt clinic visits, and hospitalizations (Elborn 1998; Demars et al. 2010; Gillen et al. 1995; Mungle et al. 2002) Other concerns are workplaces with airway irritants, exposure to infections, exertion level, and job stress (Orenstein, 2004; Yankaskas e t al. 2004) These varied conditions are not well documented in the literature and combined may have consequences for emerging adults in gaini ng and maintaining employment. T here are no outright prohibitions about career choice s, in spite of all the potential employment barriers and the recommended guidance is to consider intellect, ability, preferences, life goals, and current and future physical limitations (Orenstein, 2004; Yankaskas et al. 2004) Some employment accommodations that individuals seek are

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35 flexible work hours, reduced work hours, flexible use of vacation and sick time, and working from home (Yankaskas et al. 2004) Employment Rate and Occupation Type The CF Foundation (2011) reported that in 2009, 46% or 5748 adults with CF maintained some level of full time or part time employment. Conversely, 22% or 2749 individuals were unemployed or identified as disabled and the remainder of the adult population described themselves as students, homemakers, or retired. This employment rate is comparable to what num erous studies have reported. Several studies described employment rates and the type of positions held by individuals with CF. Seven studies (Burker et al. 2004; Burker et a l. 2005; Demars et al. 2010; Frang olias et al. 2003; Gillen et al. 1995; Goldberg et al. 1985; Hogg et al. 2007) detailed employment rates and the types of employment held by their respective samples. In every study, approximately 50% of the sample was work ing. In the Burker et al. (2004; 2005) studies (n=183), 53.4 % of subjects were employed in professional, technical, or managerial capacities and to a lesser extent (29.5%) in clerical, sales, a nd services positions. Demars, Uluer, and Sawicki (2010) (n=68) reported a breakdown of hours worked per week: 46% working 0 20 hours per week, 17% working 20 30 hours per week, 23% working 30 40 hours per week, and 14% working >40 hours per week but no information was provided on the type of occupation. Frangolias et al. (2003) (n=73) reported 51% worked fulltime and 34% worked part time in var ied occupations. Gillen et al. (1995) (n=49) reported that the majority of subjects (53%) were employed in professional occupations; followed by sales/clerical work (31%), other occupations (16%), and self emp loyment (12%). Goldberg et al. (1985) (n=52) reported 66% of the

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36 sample working in entry level professional occupations. While Hogg et al. (2007) (n=50) reported 40% of the sample working at the time and 94% having had some work history. Vocational Rehabilitation According to Burker et al. (2005) it is only recently that individuals with CF are considered viable candidates for vocational rehabilitation services. This has to do with the perception among rehabilitation providers of limited life expectancy and vocational potential (Burker et al. 2005) Furthermore, only a small number of people with CF are referr ed or receiving VR services nationwide (Burker et al 2005) In 2010, out of 321,791 clients with disabilities nationwide who received VR services, 189 (0.06%) were individuals with CF (J.S. Doyle, Rehabilitation Services Administration, personal communi cation, May 9, 2011). Three older studies (Goldberg et al. 19 85; Goldberg et al. 1979; Isralsky, Goldberg, & Shwachman, 1979) examined vocational rehabilitation aspects of CF. Goldberg et al. (1979) investigated vocat ional development and adjustment in CF and drew three major conclusions. First, the CF group scored lower than a healthy peer group in measures of vocational and educational plans and was less realistic in considering their limitations. Second, the CF gr oup scored higher on measures of commitment to vocational choice, work values, and awareness of occupational information. Third, the authors concluded that CF patie nts held strong work values. Goldberg et al. (1985) stu died the rehabilitation status of young adults with CF. This was a longitudinal study of disease severity and the educational and vocational plans of a group of CF patients Similar to Frangolias et al. (2003) and Hogg et al. (2007) this study reported on the employment limitations presented by CF. For instance, subjects reported limitations due to poor health, limits on the number of hours

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37 they could work, and the need to avoid ext remes in climate. In addition, Goldberg et al. noted vocational status was not predicted by any one clinical or demog raphic factor. Goldberg et al. (1985) concluded that vocational counseling should begin at an early a ge and continue through adulthood. Isralsky et al. (1979) investigated the educational and vocational needs of individuals with CF and made the assertion that disease severity was not associated with making vocational plans. In addition, Isralsky reported that children with CF have less exposure to career infor mation and that career planning has been inadequate because of the limited life expectancy. Furthermore, vocational development stages might not apply to children with CF, who are often absent from school, because this stunts their development process. Em ployment and Health Related Quality of Life Health related quality of life (HRQOL) is a multidimensional construct that status, 3. psychological/emotional state, and 4. social (Quittner, Buu, Messer, Modi, & Watrous, 2005, p. 2347) Two studies (Havermans et al. 2009 ; Hogg et al. 2007) have been reported that focus on the relationship of wo rk and HRQOL. Havermans et al. (2005) (n=57) tested the relationship of disease severity (measured by FEV 1 ) to HRQOL (measured by the Cystic Fibrosis Questionnaire Revised) to determine if working or non working individuals reported better HRQ OL. Work was classified as either full or part time employment or school attendance. They reported three findings: F irst, higher levels of HRQOL are associated with milder disease severity. Second, milder disease severity was noted in individuals who ar e working or going to school. Third, higher levels of HRQOL are associated with working. Despite

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38 the fact that work contributes to perceptions of better qu ality of life, Havermans et al. (2009) also point out the demands of working have a detrimen tal eff ect on health status. Hogg et al. (2007) evaluated disease severity and WD in relationship to quality of life using the Chronic Respiratory Disease Questionnaire for 50 individuals with CF. The authors found that work w as related to better quality of life scores. At the time of the study, 40% of the sample was working and 94% reported some work history. Hogg et al. (2007) further reported CF had affected career choice (51% of the sam ple), the job duties (37% of the sample), quit rate due to CF (35% of the sample), and significant obstacles to employment (68% of the sample). Just 6% reported receiving any formal career counseling. Similar to Hogg et al., Frangolias et al. (2003) reported that CF influenced educational and employment choices with 34% of the sample responding that, CF influenced educational goals and 41% responding th at CF influenced career goals. Educational Achievement and Employment Outcomes The majority of school age children with CF have few or no hospitalizations or exacerbations but school absence is a concern because of illnesses related to lung infections (DePaepe et al. 2002; Strawhacker & Wellendorf, 2004) One st udy (Wildhag en et al., 1996) reported that children with CF were absent an average 19.5 school days per year. Educational achievement is associated with positive employment outcomes in adulthood (Achterberg et al. 2009) though; just one CF specific inves tigation of this phenomenon is available (Burker et al. 2004) Burker et al. (2004) reported a higher education level among those who were working as opposed to those unemployed. Additionally, descriptive data published by the CF Foundation is available Emerging adults with CF, have a high school graduation rate that varies from the

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39 general population and from youth with other disabilities. According to the Cystic Fibrosis Foundation, 26% of adults had completed high school and another 8% of the popul ation had less than a high school education (Cystic Fibrosis Foundation, 2011) This compares to 72% of all students with disabilities completing high school in 2003 (Wagner, Newman, Cameto, G arza, & Levine, 2005) and 89% of the general population completing high school in 2008 (Chapman, Laird, & KewalRamani, 2010) S econdary school completion and enrollment in post secondary education is pertinent to later emp loyment outcomes and earnings f or youth with disabilities. In addition, a s the economy becomes increasingly knowledge based attaining postsecondary education is crucial (Newman et al. 2009) For instance in 1959, only 20 percent of workers needed some college for their job whereas by 2000, this had increased to 56 percent (Newman et al. 2009) Furthermore, level of education In 2008, young adult more than young adults with an associate's degree, 53 percent more than young adult high school completers, and 96 percent more than young adults who did not earn a high (Aud et al., 2010, p. 60) Disability and Employment Themes Given the limited amount of available research pertaining to CF and employment, studies relating to the employment experiences of people with disabilities were examined to discern general themes that may also be applicabl e to CF. The studies reviewed here detail the experiences of individuals with varied disabilities physical and sensory deficits, mental illness, HIV, cancer, multiple sclerosis, motor neurone disease,

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40 Sever al key themes emerge from the literature regarding the employment aspects of having a disability. These are barriers, stigma, discrimination, concerns about disability disclosure, negative vocational rehabilitation experiences, a nd the meaning of work. Ba rriers are a great concern for people with disabilities. Numerous studies identified some barrier to obtaining and maintaining employment for people with disabilities (Conyers, Koch, & Szymanski, 1998; Freedman & Fesko, 1996; Hernandez, Cometa, Velcoff, R osen, Schober, & Luna, 2007; Noonan, Gallor, Hensler McGinnis, Fassinger, Wang, & Goodman, 2004; O'Day, 1998; Shier, Graham, & Jones, 2009; Yorkston, Johnson, Klasner, Amtmann, Kuehn, & Dudgeon, 2003) These barriers take many forms architectural/physic al obstacles, stigma/discrimination, unavailability of vocational rehabilitation services, internal barriers, personal barriers, societal barriers, and the severity of illness. Physical barriers are a commonly reported compliant (Conyers et al. 1998; Noon an et al. 2004) This refers to inaccessible environments such as entrances to schools and office buildings and the layout within those facilities. Physical barriers have the unintended consequence of limiting educational a nd vocational opportunities. S tigma and discrimination are also widely reported in the literature (Fr eedman & Fesko, 1996; Hernandez et al. 2007; Noonan et al., 2004; O'Day, 1998; Shier et al. 2009; Yorkston et al. 2003) Many individuals with disabilities report not being offered employment, dismissal from employment, limited opportunities for advancement, and being informed they could not perform certain jobs or tasks. Reasons cited by people with disabilities for not being hired or being terminated were that accommodations were

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41 too expensive, being hired would lead to increases in work related accidents, and a subtle notion that people with disabilities are unable to work. Additionally, they experience what Noonan ( 2004, p. 69) negative attitude s by coworkers and supervisors. Disability disclosure figures prominently in several pieces of research (Fesko, 2001; Freedman & Fesko, 1996; Johnson, Yorkston, Klasner, Kuehn, Johnso n, & Amtmann, 2004; Shier et al. 2009) Disclosure is often required in order to obtain on the job accommodations yet it has some potential disadvantages. Participants in one study expressed apprehension about disclosing hidden disabilities and thus bei ng eliminated from consideration by prospective employers (Freedman & Fesko, 1996) Self disclosure is also linked to employer discrimination (Shier et al., 2009) Another study found that being HIV+ carried a greater stigma and potential for anti disability prejudice such that these workers were less likely to disclose their disability (Fesko, 2001) There is a concern about when to disclose a disability either prior to an interview, during an int erview, or after the offer of employment. Given the high incidence of stigma and discriminatory employment practices noted in multiple studies (Fr eedman & Fesko, 1996; Hernandez et al. 2007; Noonan et al. 2004; O'Day, 1998; Shier et al. 2009; Yorkston et al. & Dudgeon, 2003) concern is justified. Disclosure could be perceived by some individuals with a disability as self incriminating rather than empowering. Fesko (2001) suggests that rehabilitation counselors can aide clients by exploring their com fort with sharing their condition and developing a scripted disclosure statement.

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42 Several studies (Benz, Johnson, Mikkelsen, & Lindstrom, 1995; Fr eedman & Fesko, 1996; Hernandez et al. 2007; O'Day, 1998) cited negative experiences with vocational rehabilitation (VR) services. VR services are intended to be beneficial for individuals with disabilities however, in many instances they hinder rather than help. Freedman and Fesko (1996) noted several deficiencies in the delivery of services including poor counselor follow up, lack of help with job searches, placement in dead end jobs, cases being closed prematurely, inconsistent application of guidelines, and inconsistent se reg ional office. Hernandez et al. (2007) reported similar VR shortcomings and found that clients were placed in low wage, temporary, and menial p (1998) study (1998) reported, it was impossible or difficult to get services and we re told there were no funds. Finally, Benz, Johnson, Mikkelsen, and Lindstrom (1995) reported this from their survey, Students and parents are: (a) confused about the transition process and the different transition res ources in the community; (b) intimidated by the VR application process; (c) frustrated with the number of assessments that must be conducted for eligibility determination, and the lack of meaningful information about the reasons for these assessments; and (d) overwhelmed by, and even somewhat embarrassed about, the variety of professionals with whom they must discuss their needs in order to obtain transition information and resources (p. 143) Work has profound meaning for individuals with and without disabilities (Dutta, Gervey, Chan, Chou, & Ditchman, 2008; Szymanski & Hershenson, 1998) and contributes to life satisfaction (Judge & Watanabe, 1993) In particular, e mploymen t conveys a valued social status, gives purpose to life, and represents economic security (Szymanski, Parker, Ryan, Merz, Trevino Espinoza, & Johnston Rodriguez, 2003)

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43 Thus, work has great meaning for all individuals. Three studies investigated the meaning of work (Conyers et al. 1998; Freedman & Fesko, 1996; Johnson et al. 2004) in the lives of the participants. Conyers, Koch, and Szymanski (1998) found e mployment m eets important psychological and economic needs while reducing the sense of dependency felt by individuals with disabilities. Freedman and Fesko (1996) observed (p. 51) which increases self esteem and well being. To others work goes beyond the financial benefit it is therapeutic, enhances their identity, and increases social contact thereby decreasing isolation (Johns on et al. 2004) People with disabilities face significant barriers in the workplace. They must cope with, among other things; stigma, discrimination in hiring and promotions, architectural and physical barriers, uncertainty about disclosing their disabi lity, and a poor system of services from vocational rehabilitation departments. It would follow that people with CF encounter similar difficulties in their employment experiences, however; there is no confirmatory research. There is a large gap in the re search regarding the career development and employment experiences of people with CF. Transitioning to Adulthood and Employment Transition to adulthood is a multifaceted process that encompasses employment, education, self determination, relationships, co nsumerism, and health care (Repetto, 2003) Examples of some transition tasks are, connecting to primary and specialty health care providers, preparing for post secondary education and/or work, housing arrangements, transporta tion, and financial independence (Betz & Redcay, 2005; Repetto, 2003) Halpern (1994) provided the seminal description of transition:

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44 Transition refers to a change in status from be having primarily as a student to assuming emergent adult roles in the community. These roles include employment, participating in postsecondary education, maintaining a home, becoming appropriately involved in the community, and experiencing satisfactory personal and social relationships. The process of enhancing transition involves the participation and coordination of school programs, adult service agencies, and natural supports within the community. The foundations of transition should be laid during the elementary and middle school years, guided by the broad concept of career development. Transition planning should begin no later than age 14, and students should be encouraged, to the full extent of their capabilities, to assume a maximum amount of re sponsibility for such planning (p. 116) For emerging adults with CF transition has become a focal point in the past two decades (Reiss & Gibson, 2002; Zack et al., 2003) This attention is due primarily to the gain in longevity, with life expectancy now approaching 36 years. Transition with CF has the added challenges posed by a complicated daily medical regimen that individuals must uphold in order to maintain their health (Palmer & Boisen, 2002) Transition to adulthood can be complex for healthy young adults and especially difficult for those who have a chronic illness as they may encounter additional challenges to negotiating the transition to independence (Hanley Maxwell, Sz ymanski, & Owens Johnson, 1998; Wagner, Newman, Cameto, Levine, & Garza, 2006) Vocational Rehabilitation and the Education System : Partners in Transition Transitioning to independence with CF includes navigating two complex organizations that operate in t andem the vocational rehabilitation and education systems. The federal Vocational (Kochhar Bryant, Bassett, & Webb, 2009, p. 34) VR professionals are ideally suited to assist emerging adults with CF in the transition process with their knowledge of the workplace and disability. School districts collaborate with the VR program to deliver

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45 transition services and addit ionally have their own federal mandate to assist students with disabilities in the guise of the Individuals with Disabilities Education Act (Benz, Lindstrom, & Latta, 1999; Kochhar Bryant et al., 2009) The education system and VR have been collaborating o n behalf of youth with disabilities since the passage of two historic pieces of federal legislation in the 1970s the Rehabilitation Act of 1973 and the Education for All Handicapped Children Act of 1975 (now the IDEA) (National Co uncil on Disability, 2008) Together these laws have made it possible for thousands of children with disabilities to gain the educational and vocational skills required for transition to adulthood. According to Benz, Lindstrom, and Latta (1999) school and VR agency partnerships were emphasized since the passage of the laws, The need for state and local education and vocational rehabilitation agencies to collaborate in their support of transition aged youth was rec ognized and emphasized in the parallel transition related language and mandates contained in the Individuals with Disabilities Education Act of 1990 (P.L. 101 476) and the Rehabilitation Act Am endments of 1992 (P.L. 102 569) (p. 56) VR is a federal state program designed to help people with disabilities to choose, get, and keep employment. The VR program administers school to work transition services that include activities to help students with disabilities prepare and plan for employment success after high school. Generally, students served by school to work transition services are between the ages of 16 to 24 as this is stipulated in IDEA. The federal Rehabilitation Services Administration (RSA) is the par ent agency of the VR program. RSA dictates schoo l to work transition programs offer the following core services: assessment, diagnosis and treatment of impairments, vocational counseling, occupational training, on the job training, basic academic and reme dial

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46 training, job readiness training, disability related skills training, miscellaneous training, job related services, transportation, maintenance, rehabilitation technology, personal assistance services, technical assistance services, and other services (National Council on Disability, 2008) Ideally, these seventeen core services are implemented with input from the student and their parent or guardian. Services are provided in a variety of settings including schools, VR of (National Council on Disability, 2008) The Education for All Handicapped Children Act (renamed the Individuals with Disabilities Education Act or IDEA) was enacted in 1975 to address and rectify the educational inequalities experienced by students with disabilities. Prior to the passage of the act these students experienced discrimination and exclusion from school. The act was reauthorized in 1990, 1997, and 2004 each time making further improvements for students with disabilities (Smith & Tyler, 2010) In the past twenty years, students with disabilities have made great strides in making the shift from secondary to post secondary educational e nvironments thanks in part to the benefits of IDEA (Kochhar Bryant et al. 2009) Effective transition planning is crucial to the success of students with disabilities after high school (Flexer, Baer, Luft, & Simmons, 2008; Smith & Tyler, 2010) Under school (Cobb & Alwell, 2007, p. 11) including postsecondary education, vocational education, integrated employment (includin g supported employment); continuing and adult education, adult services, independent living, or community participation (US Department of Education, 2011)

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47 Individualized Educat ion Plan (Smith & Tyler, 2010) These consist of a broad array of activities designed to facilitate the movement towards adulthood by means of classroom instruction, related services, community experiences, the development of employment and other post school adult living objectives; and if appropriate, acquisition of daily living skills and provision of a functional vocational evaluation (US Department of Education, 2011) Transition assessment invol ves an appraisal of a varied set of competencies ongoing process of collecting data o as they relate to the demands of current and future working, educational, living, (Sitlington, Neubert, Begun, Lombard, & Leconte, 2007, pp. 2 3) Career and vocational assessment in transition is a formal process utilizing a variety of assessments and instruments (Flexer et al. 2008) Assessments are completed in a variety of ways both formal and informal. Information is gathered about career maturity, work behaviors interests, general abilities, specific aptitudes, career attitudes, and characteristics of the student. Formal assessment using standardized instruments is performed using a variety of norm referenced tools. Some formal transition assessment instrument s are the Becker Reading Free Interest Inventory, Brigance Life Skills Inventory, Career Development Inventory, Career Maturity Inventory, the COPS Interest Inventory, Knowledge of the World of Work Scale, Kuder Vocational Preference Record, Reading Free V ocational Interest Inventory, the Self

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48 Directed Search, the Transition Planning Inventory, and the Wide Range Interest and Opinion Test (Flexer et al. 2008; National Secondary Transition Technical Assistance Center, 2010) Informal assessments are not sta ndardized instruments but rather take the form of interest inventories, rating scales, and personal interviews. These might be developed by a teacher or school district or come from many available resources on the internet (Sitlington et al. 2007) Despi te the progress made by VR and school systems serving youth with disabilities, there persists high rates of unemployment, economic instability, and low rates of participation in post secondary education for emerging adults with disabilities (Wittenburg & Maag, 2002) Additionally, studies by Cobb and Alwell (2007) Estrada Hernandez et al (2008) and Yeo and Sawyer (2005) demonstrate that youth with chronic illness experience academic and vocational difficulties aside from the challenges presented by their illness. Additionally children with chronic illness face developmental challenges related to career maturity that th eir healthy peers do not encounter (Ochs & Roessler, 2001) Career Development Minimal empirical research has investigated the career development and employment experiences of people with CF (Burker et al. 2005; Gillen et al. 1995) Specifically, the career development of individuals with CF was investigated in just one historic study (Goldberg et al. 1979) Goldberg et al. (1979) investigated vocational development in people with CF and drew three major conclusions. First, the CF group scored lower than a healthy peer group in measures of vocational and educational plans and was less realistic in considering their limitations. Second, the CF group scored

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49 higher on measures of commitment to vocational choice, work values, and awareness of occupational information. Third, the authors concluded that CF patients held strong work values. The origins of career development date back a century to the work of Frank Parsons with Boston youth at t he Vocation Bureau (the first known career counseling program which he founded) and the 1909 publication of his prominent book, Choosing a Vocation (Baker, 2009; Hershenson & Liesener, 2003) Parsons coined the term (Savickas, 2009, p. 195) the forerunner to career development scientific advising as the basis (Brown & Brooks, 1990, p. 14) unchangeable occupational choice by early adulthood. He proposed a three step system of vocational guidance: (a) gatherin g information about the person, (b) gathering information about the world of work, and (c) matching the two to arrive at a career selection (Szymanski & Hershenson, 1998) This approach constitutes an early trait and factor theory, that is, the method of matching individual traits with environmental counseling practices (Hershenson & Liesener, 2003) Parsons presumed that occupational choice was an un alterable one time event of early adulthood and his notions about career patterns prevailed for the next four decades (Szymanski et al. 2003) Subsequent theories of career deve lopment originating in the 1950s and 1960 s adopted two novel viewpoints: deve lopmental

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50 (Parker & Szymanski, 1998; Szymanski & Parker, 2003) Brown and Brooks (1990) described the present ready to choose, choosing, and typically continuing to make choices from among the (p. xvii) Career d evelopment is a broad construct that according to Hanley Maxwell, Szymanski, and Owens Johnson (1998) (p. 150) Specific lifelong sequences of occupationally relevant choices and behaviors (Szymanski & Hershenson, 1998, p. 328) Career development has gradually come to embody two distinct meanings on e pertaining to a process and the other referring to intervention s (Herr, 2001) Career development process progression of career decisions and/or events as influenced by life or work experience, education, on the (Chartrand & Camp, 1991, p. 2) A precise process based definition is espoused by the National Career Development Association (2008) Career development is the total constellation of psychological, sociological, educational, physical, economic, and chance factors that combine to (p. 2) Whereas career development interventions are practices or procedures by counseling professionals aimed at enhancing career development such that they, (Spokane, 1991, p. 22)

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51 Intervention strategies include numerous diverse options, such as, individual and group career counseling, career planning batteries, transferable skills analysis, and experiential interventions (Hershenson & Liesener, 2003) D espite a vast body of career development literature, individuals with disabilities are largely overlooked (Conte 1983; Curnow, 1989; Szymanski et al. 2003) The majority of the e xtant career development research was conducted with healthy (Szymanski et al. 2003, p. 92) Furthermore, there is not a generally accepted model of career development pertaining to peop le with disabilities (Goldberg, 1992) Szymanski et al. (2003) and Szymanski and Hershenson (1998) contend that with disabilities. Sup (Super, 1980; Super, Savickas, & Super, 1996) is a developmental approach that views career development as a lifetime process rather than a onetime event. Specifically, the theory views career development as comprised of a series of career dec self concept (Swanson & Fouad, 1999) career s and roles. Life roles (child, student, leisurite, citizen, worker, and homemaker) interact with life stages (growth, exploration, establishment, maintenance and decline) to influence career development (Sharf, 2002) Occupational self (Sharf, 2002, p. 154) Occupational self concept is a product of vocational preferences and c ompetencies that change and

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52 evolve over time with new experiences and learning, and stabilize with age (Swanson & Fouad, 1999) concept and refers to the (Sharf, 2002) in environment stance that is best evidenced (Super et al. 1996) several vocational instruments owe their lineage to his theory and contributions to the field (Kapes, Mastie, & Whitfield, 1994; Zunker, 1994) These are the Care er Development Inventory, the Adult Career Concerns Inventory, the Salience Inventory, and the Values Scale. Each of these tools advanced the science and practice of career mar (Savickas, 1994, p. 54) Szymanski and Hershenson (1998) r people with disabilities and is particularly appropriate to individuals with genetic disabilities. They note expressly that his concept of career maturity has utility in de velopment concerns of individuals who may have been restricted by limited early role fantasies, and career related (Szymanski & Hershenson, 1998, p. 332) Furthermore, Szymanski and Hershenson assert that such early experiences are essential to normal career disabilities is that it does not sufficiently consider the impac t of disability on career

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53 development. Specifically career decisiveness and career maturity may be susceptible to disability (Szymanski & Hershenson, 1998) (1997) is lik ewise considered efficacious for people with disabilities (Szymanski & Hershenson, 1998) factor approach (otherwise known as a person in environment approach) linking six broad personality types to work environments (Sharf, 2002) personality type, which encompasses unique characteristic attitude s, skills, and responses to situations (Swanson & Fouad, 1999) (1997, p. 7) The theory has four fundamental assumptions (Holland, 1997) First, Holland proposed that most individuals can be described by six personality types Realistic (preferring concrete, hand s on activities), Investigative (preferring analytical or methodological pursuits), Artistic (preferring creative and self expressive pursuits), Social (preferring to work with others), Enterprising (preferring competitive and/or leadership pursuits), or C onventional (preferring orderly/systematic pursuits) (Holland, 1997; Holland, Fritzsche, & Powell, 1994) Second, work environments are characterized by their resemblance to model environments with parallel lab els as the personality types, again Realistic, Investigative, Artistic, Social, Enterprising, and Conventional. Third, people search for work environments that complement their (Sharf, 2002; Swanson & Fouad, 1999)

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54 occupational behavior, for example, career choice, employment tenure, turnover, and job satisfaction (Swanson & Fouad, 1999) counseling (Sharf, 2002; Szymanski & Parker, 2003) He credits the popularity of the theory (Holland, 1997, p. 7) There are some criticisms of Ho the role of social and environmental variables (Conte, 1983) These variables are known to be significant considerations for people with disabilities (Szymanski & Hershenson, 1998) Secondly, people with genetic disabilities may have limited early experiences, which in turn inhibits their career knowledge and restri cts their ability to accurately assess vocational preferences (Szymanski & Hershenson, 1998) Szymanski et al. (2003) disabilit ies rests with the various instruments resulting from the theory. Holland authored or co authored four vocational instruments based on his theory of types: the Career Attitudes and Strategies Inventory (CASI), My Vocational Situation (MVS), the Self Direc ted Search (SDS), and the Vocational Preference Inventory (VPI) (Kapes et al. 1994; Whitfield, Feller, & Wood, 2009; Zunker, 1994) The instruments are all self rated thus integrating client input and self determination. The SDS, for instance, involves clients in generating numerous career alternatives and has two versions, one for normal reading level and one for low reading level. Likewise, MVS involves active client participation in determining re adiness for career planning.

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55 Career devel opment theori es abound but their applicability to people with disabilities is circumspect given the heterogeneity of this population (Szymanski & Hershenson, 1998; Szymanski, Enright, Hershenson, & Ettinger, 2003) Szymanski and Hershenson (1998) contend that career development theories are neither fully applicable nor nonapplicable to people with disabilities. Conte (1983) theories have been of dubious utility both in describing an d predicting the vocational (p. 316) Curnow (1989) affirms assertion regarding the uncertain utility of existing theories and add itionally describes the scarcity of career development literature for people with disabilities. Other authorities maintain that i nstead of predictive ability prevailing general purpose career development theories provide a framework (Szymanski et al. 2003) and offer valuable interventions (Szymanski & Hershenson, 1998) Despite these controversies, one thing is certain, (Hanley Maxwell et al. 1998, p. 150) Mod els of Disablement Models of disablement enhance knowledge of career development. The last fifty years have borne several advances in the understanding of disability, notably, ever improving models for conceptualizing and describing disability (Brandt & Pope, 1997; Field, Jette, & Institute of Medicine, 2007) Disability models are now regular components of clinical practice in the majority of health related professions including medicine, nursing, occupational therapy and physical therapy (Snyder, Parsons, Valovich McLeod, Bay, Michener, & Sauers, 2008) In particular, biopsychosocial disablement framewor (Jette, 2006, p. 727) Models of disability include

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56 older frameworks, such as, the Nagi model, the National Center for Medical Rehabilitation Research model (NCMRR), the International Classification of Impairments, Disabilities, and Handicaps (ICIDH), and the recently issued International Classification of Functioning, Disability, and Health (ICF). Brandt and Pope (1997) observed that since the 1950s ideas about the causes of disability have evolved from the medical model to biopsychosocial models. In the medical model, the focus is first on illness or impairment and second on the individual. Disability is thought to be an inherent quality of the individual (i.e. t who needs to be fixed in the medical model. For this reason, it is sometimes referred to as a deficit model (Jette, 2006) and is most often described in rehabilitation and health care literature (Marks, 1997) Vash and Crewe (2004) mentioned that prior to the shift (p. xii) Conversely, biopsychosocial models assume, unlike the medical model, that disability results from the interplay of biological, personal, and social aspects. Disability is not characteristic of th e person but rather a characteristic of society or as Jette (2006) (p. 727) inherent within individuals, but (Parker & Szymanski, 1998, p. 332) Much of the current thinking on disability evolved from the work of sociologist Saad Nagi i n the 1960s on what is now called the Nagi model or the Nagi Disablement Model (Jette, 2006; Verbrugge & Jette, 1994) According to Jette (2006) Nagi introduced the term disable ment

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57 acute conditions on the functioning of specific body systems, on basic human desired roles in (p. 727) domains: active pathology, impairment, functional limitations, and disability (Jette, 2006) The model also incorporates the influence of the environment with the inclusion of the factors of family, community, and society (Brandt & Pope, 1997) The Nagi model is a linear model that moves systematically from pathology to impairment to functional limitations to disability (Jette, 2006) With the advent of the Nagi model, rehabilitation professionals started retreating from the medical model (Brandt & Pope, 1 997; Jette, 2006; Verbrugge & Jette, 1994) defined roles (being a worker for example) as the result of the physical or mental condition. Disability may or may not result from the other three domains: active pathology, impairment, or functional limitation. In addition, Nagi stresses that disability is not inherent in the individual (as opposed to the medical model), but rather is the result of the interaction of the i ndividual and the environment. ilities Act (ADA) rests upon the Nagi framework and recognizes that improvements in the environment (access to public transportation, workplace accommodations, etc.) can reduce disability and thus improve (Cornell University, 2011)

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58 In 1993, the National Center of Medical Rehabilitation and Research introduced their own disablement model the NCMRR model (Brandt & Pope, 1997) This model incorporates four domains: pathophysiology, impairment, functional limitations, and disability while adding a fifth component societal limitation limit fulfillment of roles or dent access to services and opportunities associated with full (Snyder et al., 2008, p. 431) The NCMRR and Nagi models share concepts, but use slightly different terminology. For instance, where Nagi use s the term active pathology, the NCMRR uses pathophysiology. Where NCMRR differs from Nagi is with the inclusion of societal limitation. Another distinguishing feature of NCMRR is the emphasis it places on the adaptation to functional limitations made by the person with a disability (Snyder et al., 2008) This adaptation occurs in various is an aspect of this adaptation process and one in which the individual is th ought to be an active participant. The goal of rehabilitation is ultimately an improvement in quality of life (Snyder et al., 2008) A third biopsychosocial model is the International Classification of Functioning, Disability, and Health (ICF) issued by t he World Health Organization (WHO). Initially introduced in 1980 as the International Classification of Impairments, Disabilities, and Handicaps (ICIDH), the model underwent major revision, and in 2001 was reintroduced as the ICF ( World Health Organization, 2001) International Classification of Functioning, Disability, and Health The World Health Organization (2001) framework, the International Classification of Functioning, Disability, and Health (ICF), is a classification system for the description

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59 of health and health understand functioning and disability (De Kleijn De Vrankrijker, 2003; Stucki & Rauch, 2010) comprehensive view of health related states from biological, personal, and social (Field, Jette, & Institute of Medicine, 2007, p. 37) Moreover, it is a biopsychosocial model that set the stage for new ways of considering disability. As Snyder (2006) disability no longer means a condition, an incapacity, or lack that be longs to a body, but rather a product of the interactions between self, society, body, and the variety of interactions (from political economies to personal commitments) (p. 1xx) predecessor, the International Classification of Impairments, Disabilities, (World Health Organization, 2001, p. 5) The innovation e mbodied in the ICF (World Health Organization, 2001, p. 5) The revision emphasizes the constituents of health, whereas the previous framework focused on the impact of diseases (World Health Organization, 2001) In a second and nomenclature (Field, Jette, & Institute of Medicine, 2007) The ICF is arranged according to the Health Condition first, from which might spring an impairment, activity limitation, or participation restriction. After heal th condition, are the domains of w hich has two subcomponents (World Health Organization, 2001) The first domain, Functioning and Disability, is comprised of the subdomains Body Functions and

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60 Structures and Activities and Participation The second domain, Con textual Factors, is comprised of Environmental Factors and Personal Factors Interacting with the Health Condition, these two domains form the basis from which the characteristics of the body, the individual, and society are classified. The components un der Functioning and Disability are expressed as problems (e.g. impairment, activity limitations, or participation restrictions) or in neutral terms as non problems (World Health Organization, 2001) logy refers to, functioning as an umbrella term for body functions, body structures, activities and participation, and represents the positive aspects of the interaction between an individual with a health condition and their environmental and personal fac tors (World Health Organization, 2001) Disability is the umbrella term ICF uses for impairments, activity limitations, and participation restrictions, and denotes the negative aspects of the interaction between an individual with a health condition and their environmental and personal factors (World Health Organization, 2001) The ICF presents an elaborate construct of disability. While the earlier models, NCMRR and Nagi, were simplistic in their graphic representations of the disablement process as a linear progression, the ICF represents an innovative approach to displaying and dissecting the concepts of health and disability. The ICF depicts the interaction of its various components in an arran gement of three r eciprocal levels ( Figure 2 1 ) On the top level appears the Health Condition, the middle level presents Functioning and Disability (i.e. body functions and structures, activities, and participation), and the bottom level presents Contextu al Factors (i.e. environmental factors and personal factors). As a classification framework, the ICF does not model

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61 the process of disability but rather it maps disability related constructs (World Health Organization, 2001) Essentially, under the model, functioning and disability are reflected as the interaction between health conditions and personal and environmental contextual factors (Field, Jette, & Institute of Medicine, 2007) The introduct ion of the ICF instituted numerous new constructs by which to evaluate disability and acts as a unifying paradigm for scientific inquiry among various disciplines (Jette, 2006; Jette, 2009; Stucki & Melvin, 2007; Stucki & Rauch, 2010) One of the most dramatic changes brought about by the ICF is in terminology. ICF denotes a positive connotation to describe disability, for example, functional ability rather than handicap (Sny der et al., 2008). The ICF uses the term health condition in a universal way to encompass the diseases, disorders, injuries, trauma, and aging that are the focus of intervention (World Health Organization, 2001) The domain of body functions an d structures encompasses all the physiological and psychological human functions and all parts of the human anatomy from internal organs to limbs (World Health Organization, 2001) The activity domain refers to the completion of tasks or actions, for example, walking, climbing steps, or eating. The participation domain refers to involvement in life situations and society, for example, doing things with friends or attending school (Jette, 2006) Participation is characterized as activity performed in a social setting or context. Problems of body function or structure that occur because of the health condition, and thus cause a deviation from the normal level of functioning, are termed impairments (World Health Organization, 2001) Individuals may also have activity limitations when they are unable to complete desired activities or they might have participation

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62 restrictions problems in maintaining involvement in life situations (Jette, 2006; World Health Organization, 2001) The context of personal existence is incorporated in the ICF via the inclusion of personal and environmental factors (World Health Organization, 2001) Environmental context is the physical, social, and attitudinal environment experienced by the individual with a disability. The personal context are factors associated with the particular individual such as, sex, race, age, heal th conditions, and so on (Jette, 2006; World Health Organization, 2001) In the ICF, the disablement process is a function of the reciprocal interaction of many factors: health condition, body function/structure, activity, participation, environmental and personal factors. International Classification of Functioning Applied to CF The ICF informs my thinking about functioning and disability in cystic fibrosis. The on how people live with their (Jette, 2006, p. 726) This facet of ICF is particularly important with CF, which exerts its effects on a daily basis for the lifetime of the individual (Casier et al., 2011 ; Staab et al., 1998; Wahl et al. 2005) In this regard, ICF is truly a biopsychosocial model and consistent with the aims of the proposed grounded theory study to understand the meaning and experience of work in CF. In attempting to comprehend a complex phenomenon, such as, employment experiences within the context of CF, it is useful to apply the ICF framework (Figure 2 1) The ICF presents an intricate construct of disability with its three levels and various domains. It depicts the reciprocal intera ction of these domains: Health Condition, Body Function and Structures, Activity, Participation, Environmental Factors, and Personal Factors. CF is a complicated illness that has lifelong influence on all these domains.

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63 As such, to study the interplay of employment and CF requires a multi faceted model such as the ICF. In ICF terms, the health condition of CF is the most common fatal, inherited genetic disease in the United States affecting nearly 30,000 individuals (Cystic F ibrosis Foundation, 2011) The chronic progressive nature of the disease means it has lifelong health effects 2010) Under the Functioning and Disability domain, CF affects the bod y function and structures of the pulmonary, endocrine, and gastrointestinal systems. Specifically, CF causes lung damage that inhibits breathing and causes chronic cough (Yankaskas et al. 2004) The gastrointestinal complications lead to abdominal pain, malnutrition and problems with elimination (Yankaskas et al. 2004) The endocrine complications lead to CF related diabetes and growth impairments (Yankaskas et al. 2004) Activity is impacted as the disease affects the tasks of self toileting, breathing, digestion, walking, and climbing stairs among others (Sawicki, Sellers, & Robinson, 2009; Y ankaskas et al. 2004) Participation in school, work, and community social events is effected because of the repeated bouts of infection, frequent clinic visits, and frequent hospitalizations caused by the illness (National Heart, Lung, an d Blood Institute, 2009; Ziaian et al., 2006) The activity of procre ation is impacted as the majority of men with CF are sterile due to congenital absence of the vas deferens and women have diminished fertility (Lyon & Bilton, 2002; Sueblinvong & Whittaker, 2007) The gastrointestinal symptoms of CF are particularly bothe rsome thus interfering with both activity and participation. These include poor weight gain, insatiable appetite,

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64 frequent foul smelling bowel movements, oily bowel movements, excessive gas, and stomach pain (Borowitz, Baker, & Stallings, 2002; Kreindler & Orenstein, 2006) Under the Contextual Factors domain, the person with CF copes with the consequences of the disease both environmental and personal. Environmental factors include support of family, friends, and coworkers, workplace attitudes, the stigm a of having a life limiting illness, and smokers, and smoky environments. Personal factors include their individual disease severity, level of treatment adherence, disease under standing, race, sex, and age. Figure 2 1. The ICF framework and cystic f ibrosis B ody Function & Structures Breathing and Digestion Pulmonary (Lung infection) Digestive (Pancreas ducts blocked; malnutrition results) Endocrine (Diabetes) Activity Eating/Dietary Needs Looking after health Self care Procreation Toileting Walking, Climbing Stairs Participation Education, Employment Intimate Relationships Community life Recreation and leisure Environmental Factors Family and Friends Living Situation Access to Healthcare and Insurance Stigma of illness Air Quality (Smoky environments) Workplace attitudes/discrimination Personal Factors Age Gender Socio economic Status Health status/Disease Severity Coping Style Health Condition Cystic Fibrosis

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65 Numerous researchers have exercised the ICF framework to examine a variety of conditions. ICF has been applied to brain injury (Bilbaoa, Kennedy, Chatterji, Ustun, Barquero, & Barth, 2003) cognitive disorders (Arthanat, Nochajski, & Stone, 2004) mental health disorders (Baron & Linden, 2008) developmental language impairments (Dempsey & Skarakis Doyle, 2010) AIDS (Hwang & Nochajski, 2003) disease (Muo, Schindler, Vernero, Schindler, Ferrario, & Frisoni, 2005) and spinal cord injury (Rauch, Escorpizo, Riddle, Eriks Hoogland, Stucki, & Cieza, 2010) to name a few. However, it has not yet been utilized as a framewo rk for examining CF (Mandrusiak, MacDonald, & Watter, 2009) Integrating the ICF as one my guiding frameworks will be an innovative element in my proposed study. The ICF provides an ideal lens through which to investigate CF and its employment aspects. T he ICF map presented in Figure 2 1 demonstrates that functioning and disability are the outcome of the complex interaction between the CF health condition and the physical and social environment. By using the ICF, I can obtain information on body function s and structures, activities, and participation all of which are important for functioning with CF. Moreover, these three variables contribute to global functioning and combined influence employment. A major goal of CF treatment is to maintain lung fun ction and thereby maintain overall global functioning, well being, and quality of life (Abbott, Havermans, & Hart, 2009; Ferkol et al. 2006; Hains, Davies, Quintero, & Biller, 2009) The utility of the ICF is that by mapping CF, the researcher can begin to identify and design biopsychosocial interventions targeted at (a.) maintaining global level of functioning, (b.) identifying the barriers or facilitators individuals with CF experience in activity and participation domains regarding

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66 employment, and (c.) identifying environmental barriers or facilitators to employment. Utilizing the ICF structure as a frame of reference will contribute to a meaningful understanding of the experience of working and having CF. As a biopsychosocial model of disability, it can be integrated with the proposed qualitative study. The interplay of the domains of activity, participation, environmental factors and personal factors encompasses the realm of lived experiences that a person with CF encounters as th ey navigate the wor ld of work. Emerging Adulthood A second relevant theoretical framework from which to evaluate and understand the co occurring maturational and employment processes of young adults with CF is elopmental stage posited by Arnett (2000; 2004) that bridges the period between adolescence and young adulthood. This stage roughly corresponds to the ages between the late teens to the mid to late twe nties; however, Arnett specifically targets the ages of 18 to 25. Five key features distinguish emerging adulthood from the developmental stages before or after, It is the age of identity explorations, especially in the areas of love and work; it is the age of instability; it is the most self focused age of life; it is the age of feeling in between, neither adolescent or adult; and it is the age of possibilities when optimism is high and people have an unparalleled opportunity to transform their lives. (Arnett & Tanner, 2006, p. 7) Arnett (2000) contends that emerging adulthood is a distinct developmental period of life between adolescence and young adulthood with its own unique features. It is a phase more evolved than adolescence but not quite as advanced as young adulthood. In emerging adult hood, the individual is no longer entirely dependent on parents but has not reached certain milestones historically as sociated with adulthood notably enduring romantic relationships, marriage, parenthood, and career establishment (Arnett, 2000)

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67 Arnett (2004) applies the emerging adulthood schema to a variety of circumstances relationships with parents, romantic relationships, education, employment, and religion. As defined, it is a period of prolonged self exploration with postponement of adult responsibilities and delay of major life decisions involving academics, career, marriage, and parenthood. Rather than adopting enduring adult roles and responsibilities, emerging adulthood is marked by change and exploration. standards. Events such as college graduation or marriage once signaled coming of age but these rites of passage are increasingly being delayed to the late twenties. Ar nett (2000) attributes the emergence of this developmental stage to a trend towards getting married and becoming a parent at a later age. In 1950, the median marriage age for women was 20 and for men 22. By 2000, this had risen to 25 and 27 respectively. Likewise, parenthood has seen a shift from early twenties to late twenties (Arnett, 2000) that allow young people a prolonged period of independent role exploration during the late (Arnett, 2000, p. 469) versus societies where youth directly enter into marriage and the workforce from high school. The primary fa cet of emerging adulthood is identity exploration where individuals (Arnett, 2004, p. 8) The rehearsal process evident during identity exploration leads to making lasting vocational decisions. It is during this period when young people are experimenting with a variety of options for their lives especially regarding their future careers. Arnett (2000) uring this time, many young people obtain the level of education and

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68 training that will provide the foundation for their incomes and occupational (p. 469) Approximately 80% of adolescents will obtain part time employment during high school (Arnett, 2004; Kelloway & Barling, 1999; Wagner, Newman, Cameto, Garza, & Levine, 2005) Adolescent employment is characterized by tentative forays into the world of work that are largely temporary and do not influence later career choices (Arnett, 2004; Greenberger & Steinberg, 1986) In adolescence, the primary benefit of working is not the acquisition of skills or the poten tial vocational preparation but rather the provision of disposable income for leisure activities, clothes, fast food, and personal items (Csikszentmihalyi & Schneider, 2000; Steinberg & Cauffman, 1995) It is not until individuals reach emerging adulthood, between the ages of 18 to 25, when the nature of work takes on additional significance. Whereas previously employment was often temporary and not indicative of later adult occupational roles, emerging adults are makin g employment decisions that will have lasting effects on their good at? What kind of work would I find satisfying for the long term? What are my chances of getting a (Arnett, 2000) The transition to employment is particularly important for, as Bynner (1998) has suggested, tions, entry to employment is probably the most central (p. 29) The theory of emerging adulthood is relatively new and not without some controversy about its formulation. B ynner (2005) notes that the notion of an extended transition period between adolescence and adulthood is not a new concept; rather it

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69 was first suggested in 1904 by G. Stanley Hall, a pioneer in adolescent research who p roposed adolescence ended around age 25. Furthermore, there is some question as to the need for new terminology to describe the extended transition period (Bynner, 2005) Cote and Bynner (200 8) highlight the limited amount of research studies investigating the theory. While there are numerous journal articles on the topic, many of these merely refer to the theory to represent the age group not to investigate its theoretical underpinnings Emerging Adulthood Applied to CF A discussion about emerging adulthood in CF might not have been imaginable in 1985 when the median predicted survival age was just 26 years (Cystic Fibrosis Foundation, 2011) but with predicted survival currently approaching 36 years of age (Cystic Fibrosis Foundation, 2011) emerging adulthood assumes great significance. Fundamentally, emerging adulthood addresses the components of transition to independence and so the theory has high relevance for young adults with CF. The model provides a dynamic frame of reference for c onceptualizing the particular developmental stage of young adults with CF as they achieve employment. It also highlights the aspects of development where an emerging adult might encounter transition barriers and this then can become a focus of interventio n. Emerging adulthood underscores elements that are essential to comprehending the maturational process experienced by young adults with CF. The concepts of the model most applicable to CF are identity exploration, feeling in between, and the period of i nstability. Most of the research on emerging adulthood has focused on healthy young adults and the model has not been widely applied to chronic illnesses (Luyckx et al., 2008) In fact, there are just a handful of articles pertaining to any type of chroni c illness. An

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70 extensive search of the EBSCOHOST database uncovered just four reports using emerging adulthood as a framework for interpreting chronic illness: two reports relating to diabetes (Luyckx, Vanhalst, & Seiffge Krenke, 2010; Luyckx et al., 2008) one report relating to juvenile arthritis (Gerhardt et al., 2008) and one report relating to cancer (Millar, Patterson, & Desille, 2010) The emerging adulthood framework has not been applied to individuals with CF however; the constructs are decidedly generic though individuals with CF may experience the elements differently than healthy peers. Moreover, the limited research about the adjustment and transition to adulthood of individuals with CF is promising. Several reports gauging a variety of meas ures have demonstrated successful outcomes and normative adjustment of individuals with CF. These include reports of transition to adulthood (Palmer & Boisen, 2002) psychosocial functioning (Pfeffer, Pfeffer, & Hodson, 2003; S mith, Gad, & O'Grady, 1983) quality of life (Ernst et al. 2010) and psychological adjustment (Anderson, Flume, & Hardy, 2001; Szyndler, Towns, van Asperen, & McKay, 2005) The primary facet of emerging adulthood is identity exploration in which individu als (Arnett, 2004, p. 8) Young adults with CF confront identity exploration while they strive for normalcy and social integration (Admi, 1996; Badlan, 2006; Blair, Cull, & Freeman, 1994) Like their healthy peers, they also struggle with the twin themes of emerging adulthood vocational and personal developmental concerns (Goldberg et al. 1 979; Mador & Smith, 1988; Smith et al. 1983) According to Arnett (2004) work takes on added significance as one enters the period of emerging adulthood. Arnett (2000; 2004) sup poses that emerging adults struggle with making lasting choices pertaining to

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71 (Arnett, 2000) The rehearsal process present in identity exploration typically leads to making lasting vocational decisions. However, for people with CF, the disease places certain restrictions on the types of employment enviro nments suited to them (Burker et al. 2005; Demars et al. 2010) The second aspect of emerging adulthood with utility for CF is instability which is manifested in romantic relationships, parental relationships, education, and employment (Arnett, 2000; 2004) Emerging adults with CF also face instability. However, they have the added concerns of assuming responsibility for disease management from their parents, transitioning from the pediatric healthcare s ystem to adult health care, and making education and employment decisions within the constraints of their illness (Bru mfield & Lansbury, 2004; Burker et al. 2005; Demars et al. 2010; Eickenhorst, 1996; Palmer & Boisen, 2002) Lastly, the concept of feeli ng in between has utility for comprehending young adults with CF. Arnett (2004) (p. 14) meaning in between being an adolescent and an adult. Likewise, young adults with CF are feeling in between and this has great significance. Emerging adulthood, which roughly corresponds to the ages of 18 to 25, coincides with the health care transition of young adults with CF. Aside from the typical concerns of the emerging adult (mainly relationships, school, and work), individuals with CF are assuming responsibility for disease management from their parents and transitioning from

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72 pediatric to adult h ealth care (Anderson, Flume, Hardy, & Gray, 2002; Parker H. W., 2007) Health care transition is an essential aspect for CF patients. The movement of patients with CF from pediatric focused to adult focused health care has received increasing attention from the medical community in the past two decades. This attention is due primarily to gains in predicted median survival (Zack et al., 2003; Reiss & Gibson, 2002) These gains in longevity necessitate preparation f or transition in (Parker H. W., 2007, p. 423) The Cystic Fibrosis Foundation ( CFF) encourages care centers to promote, starting at an early age, transition activities leading to independence that includes education about adult CF healthcare, career/vocational planning, and higher education options (Yankaskas et al., 2004). The CFF (Cystic Fibrosis Foundation, 2009, p. 16) states, teens transition from depending on their parents or another adult to taking charge of Emerging adults with CF face mult iple transition points as they mature (Brollier, Shepherd, & Markley, 1994) Transition is a multifaceted process that includes aspects pertaining to both health care and school: connecting to primary and specialty health care providers, preparing for post secondary education and/or work, housing arrangements, transportation, and financial independence. Preparation for transition in cystic fibrosis has the added challenges posed by the complicated medical regimen that patients must uphold in order to maintain their health. Transition to adulthood can be complex for healthy emerging adults and especially difficult for those who have a

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73 chronic illness as they may encounter additional challenges to negotiating the transition to i ndependence

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74 CHAPTER 3 METHODOLOGY Overview In keeping with the exploratory nature of the study, the method used wa s grounded theory. This qualitative method was most appropriate to this area of research, as no theory of career development exists to explain how young people with CF make career decisions or experience the world of work. The grounded theory approach allowed for the complexities associated with CF and employment to be better understood through the development of a substantive theory generated from the very experiences of young people with CF. The study employ ed the grounded theory method of qualitative inquiry to gain a deep and rich understanding about the personal meaning of work to, and the employment experiences of, people (Richards & Morse, 2007, p. 59) and so there wa s congruence between the method and the social situation of employment. Grounded th eory was a dopted because it allowed for the thorough examination of this topic from the viewpoint of the individual This approach endorses compiling a thick description of the lived experience of CF and its employment aspects. Bowers (1988) individual with CF who can best define what the truths are pertaini ng to employment. Qualitative Research Qualitative research methodologies are a means of understanding human experience that rely on analyzing words and responses to open ended questions rather

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75 than numbers (Creswell, 2009) exploring and understanding the meaning individuals or groups ascribe to a social or (Creswell, 2009, p. 4) Numerous diverse approaches inform quali tative research and the investigator has several research traditions at their disposal including ethnography, grounded theory, and phenomenology. Each of these approaches has distinct origins and unique methods of sampling, making data, coding data, and i nterpreting data, yet they also share a set of core features. The common characteristics among them are natural setting, researcher as key instrument, multiple theoretical lens, interpretive inquiry, and holistic account (Creswell, 2009) Grounded Theory Grounded theory is the leading method of qualitative inquiry in the social sciences today and has achieved international utilization (Bryant & Charmaz, 2010; Morse, Stern, Corbin, Bowers, Charmaz, & Clarke, 2009; Patton, 2002) Glesne (2011) reminds us it is not a theory per se, but rather a method of developing theory from data. The systematic, inductive, and comparative approach for conducting (Bryant & Charmaz, 2010, p. 1) Hood (2010) proposes the three essential fea sampling, (2) constant comparison of data to theoretical categories, and (3) focus on the development of theory via theoretical saturation of categories rather than substantive (p. 163) Furthermore, grounded theory is especially appropriate for research where there is limited or no prior information available of an area (Grbich, 2007)

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76 Grounded theory evolved from the work of noted sociologists Barney Glaser and Anselm Strauss in the 1960 s (Bryant & Charmaz, 2010; Charmaz, 2009) Initially associated with the field of medicine and an emphasis on the illness experience and ca regiving, grounded theory has spread to many other disciplines including education, nursing, business, gerontology, and social work (Morse et al., 2009) Its theoretical underpinnings were influenced by pragmatism and the studies of symbolic interactionis m that occurred at the Chicago School of Sociology between 1920 and 1950 (Corbin & Strauss, 1990) Charmaz (2009) theoretical perspective derived from pr agmatism which assumes that people construct (p. 189) theory focuses on the process of generating theory rather than a particular theoretical (Patton, 2002, p. 125) Bowers (1988) stressed that the grounded theory approach is not to test or validate existing theories, but rather to generate theory from systematic comparative analysis and is grounded in fieldwork so as to explain what has (Patton, 2002 p. 125) Within grounded theory two schools of thought have emerged Glaserian and Straussian (Bryant & Charmaz, 2010; Cooney, 2010; Grbich, 2007) The Glaserian approach is associated with a process of discovery, emergent directions, constant comparison of data, and theory generation. Conversely, the Straussian approach is oriented towards verification, hypothesis testing, data fracturing, strict coding procedures, and theory verification (Bryant & Charmaz, 2010; Cooney, 2010; Grbich, 2007)

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77 (Bowers, 1 988, p. 43) In doing so, the researcher must maintain both an insider and outsider perspective. In this way, events questions about what the subjects take for gran (Bowers, 1988, p. 43) Charmaz (2009, p. 178) concurs with Bowers and Richards and Morse regarding the role of the tudy, not Glesne (2011) provides an abridged version of the grounded theory method in action. Initially, the researcher collects data on a topic through interviews and observations. Then the researcher analyz es data for conceptual categories, links the categories in a tentative theory, and then collects more data to see how it fits the theory (Glesne, 2011) This process repeats with the researcher further developing categorie s and modifying the theory with new data. Theoretical sampling is inherent in the process as it suggests settings and people to sample in order to compare and contrast parts of the theory (Glesne, 2011) As demonstrated b (2011) abbreviated depiction, grounded theory is an inductive, iterative method in which data collection and analysis occur simultaneously. Grounded theory research ers seek understanding about situations or p rocesses and therefore one of th e first questions posed is, (Charmaz, 2009; Richards & Morse, 2007) Moreover, grounded theorists are interested in questions pertaining to studying social phenomena from the perspective of symbolic interaction. Building on this foundation, Richards and Morse (2007) noted that ially

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78 (p. 59) Grbich (2007) suggests that the best suited research questions are those relating to interactions between people or between people and specific e nvironments. In addition, Hood (2010) observes that grounded theory research typically illuminates a process or an action. It follows that a grounded theory study Grounded theory is devoted to understanding the ways that reality is socially constructed (Richards & Morse, 2007) It takes the position that reality is a collaborative process between people and it is constantly changing and evolving. Richards and Morse (2 007) note it is this process of steady change and social construction that interests the grounded theory researcher. It is through close observation of these events t grounded in (Richards & Morse, 2007, p. 59) Likewise, Patton (2002, p. 125) emphasizes that the findings be Sampling Strategies Three broad considerations are pertinent to sampling strategies in qualitative research: purposeful sampling, theoretical sampling, and issues of sample size. These considerations merge during the research design phas e and implementation of the study. Purposeful sampling (sometimes called purposive sampling) is the method of choosing specific participants for the study because of their unique characteristics (Patton, 2002; Richards & Morse, 2007) The goal of purposeful sampling is to select information rich cases for in (Patton, 2002, p. 230) Specifically, information rich cases provide insights, detailed understanding, and

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79 illuminate the research questions (Patton, 2002) In qualitative research, purposeful sampling is preferred to random sampling (Morse, 2010) The bias towards nonrandom selection is because, as Morse ( 2010) of whatever it is they are studying. We seek the optimal, rather than the average, experience (p. 234) researchers cannot be assured of selecting the best cases (Morse, 2010) Purposeful sampling for selecting inform ation rich cases has many variations. Miles and Huberman (1994) proposed a widely cited typology of 16 purposeful sampl ing strategies ( Table 3 1). Creswell (1998) recommends that qua litative researchers, regardless of qualitative orientation, elucidate their purposeful sampling criteria and ration ale for selecting participants. Creswell (1998) offered guidance on the types of purposeful sampling str ategies applicable to ethnographic, phenomenological, and grounded theory projects. For example, in ethnographic research the investigator first selects a particular cultural group and decides on certain aspects to be studied. Creswell (1998) suggests the researcher utilize opportunistic sampling to follow leads as they occur. Otherwise, an investigator might utilize a criterion based approach to pursue the previously specified aspects of the cultural group. In phenom enological inquiry, it is necessary that all participants have experience with the phenomenon under study. Thus, Creswell (1998) recommends criterion sampling is suitable in phenomenology because all participants have e xperience with the phenomenon. Finally, in grounded theory the researcher selects participants based on their ability to contribute to evolving theory (Creswell,

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80 1998) This is what Creswell (1998) describes as a theory based sampling strategy or in grounded theory terminology, theoretical sampling Theoretical sampling is a second area of consideration regarding sampling strategy. It is traditionally applied in grounded theory, but has utility for the other qualitative traditions and according to Richards and Morse (2007) (p. 84) Theoretical sampling is the selection of pa rticipants consistent with (Richards & Morse, 2007) and achieves (Corbin & Strauss, 1990, p. 9) Strauss and Corbin (1990) also endorse theoretical sampling, but unlike Richards and Morse (2007) they propose that concepts are the unit of analysis in grounded theory research. They characterize theo (Strauss & Corbin, 1990, p. 176) In grounded theory, Glaser (1978) and Corbin and Strauss (1990) posit that sampling proceed on theoretical grounds rather than solely drawing specific samples of grounded theory (Corbin & Strauss, 1990, p. 9) A sample includes individuals and additionally conditions, concepts, their properties, dimensions and variations (Corbin & Strauss, 1990) In o ther words, anything that might represent the phenomenon under (Corbin & Strauss, 1990, pp. 8 9) Charmaz (2009) expanding on Corbin and Strauss, adds that theoretical sampling (p. 96) Charmaz (2009) also distinguishes

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81 between initial sampling and theoretical sampling. A researcher starts a grounded theory project with initial sampling, establishing sampling criteria for people, cases, and situat ions before entering the field (i.e. a criterion based sampling strategy). However, (Charmaz, 2009, p. 100) an i nvestigator cannot identify categories in advance. Grounded theory presumes that categories will emerge through the constant comparative method of analysis. Differentiating between initial and theoretical sampling Charmaz ( 2009) (p. 100) Sample size is the third consideration concerning sampling strategie s. Patton (2002) (p. 244) and Guest, Bunce, and Johnson (2006) (p. 59) Though there are not firm methodological rules pertaining to sample size, nonetheless guidance do es exist. Sandelowski (1995) observes that sample size in qualitative research is not computed by power analysis, as is done in quantitative research, but rather by rich enough and cover the dimensions of interest. Similarly, Charmaz (2009) adds that in grounded theory the aim of sampling is theory construction, not to achieve a representative sample. Moreover qualitative research in depth on relatively small samples even single cases (N=1), selected purposefully (Patton, 2002, p. 230) According to Morse (1994, p. 230) quacy is attained when sufficient data have been collected that saturation occurs and variation is both accounted for and

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82 new information that more interviews wou (Hood, 2010, p. 161) Nevertheless, some theorists have suggested specific guidelines for sample sizes in ethnography, grounded theory, and phenomenological studies. In phenomenology, Morse (199 4) suggests at least six participants while Creswell proposes five to twenty five (Guest et al. 2006) Morse proposes approximately thirty five participants for ethnographic and grounded theory research. Creswell (1998) recommends twenty to thirty participants for a grounded theory project. Given all this variation, Patton (2002) surmises that sample size depends on several factors; namely, the study purpose, research question, what is useful, what lends credibility, available time, and available resources.

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83 Table 3 1. Typology of purposeful sampling s trategies Sampling Strategy Purpose Combination or mixed Triangulation, flexibility, meets multiple interests and needs. Confirming and disconfirming cases Elaborate on initial analysis, seeks exceptions, looking for variation. Convenience Saves time, money, effort. Least desirable strategy low credibility and information poor cases. Criterion All cases meet some criterion. Usef ul for quality assurance. Critical case Permits logical generalization and maximum application of information to other cases. If it is true of this one case, it follows to be true of all other cases. Extreme or deviant case Learn from highly unusual man ifestations of the phenomenon of interest. For example notable successes or failures. Homogeneous Focuses, reduces variation, simplifies analysis, and facilitates group interviewing. Intensity Information rich cases that manifest the phenomenon intensely but not extremely. Maximum variation Documents diverse variations and identifies important common patterns Opportunistic Follow new leads during fieldwork and taking advantage of the unexpected. Politically important cases Attracts desired a ttention or avoids attracting undesired attention. Random purposeful Adds credibility to sample when potential purposeful sample is too large. Snowball or chain sampling Identifies cases of interest from people who know people who know what cases are inf ormation rich. Stratified purposeful Illustrates characteristics subgroups and facilitates comparisons. Theory based Find examples of a theoretical construct and thereby elaborate on and examine it. Typical case Highlights what is normal or average. Note: Adapted from Miles & Huberman, 1994 Data Collection Richards and Morse (2007) observe that the practice of grounded theory does not require a particular data source, providing the theory can be grounded in the data. They

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84 further assert that data mus (Richards & Morse, 2007, p. 61) Additionally, Richards and Morse (2007) caution against attempting grounded theory with structured data records as this may be restrict what is learned from (Charmaz, 2009, p. 14) Grounded theory data can take the form of memos, field notes, interviews, transcripts of interviews, audio tapes of interviews, or information obtained from records and repor ts (Charmaz, 2009) (Charmaz, 2009, p. 16) Richards (2009) provides guidance applicable to any qualitative research tradition on data collection activities. She advises the researcher to consider not just ways of making data but ways of recording data. Data analysis will depend largely on the quality of the rec ords made (Richards, 2009) High quality data contains these elements: accuracy (records are checked against recall, notes, tapes), context (include descriptions of setting, social context, body language, tone), thick descr iption (detail of recall and imagery, interpretative comment and contextual knowledge), usefulness (carries all pertinent information about the research event, the respondent, or the setting), and reflexivity (consider the ways in which you are part of the study) (Richards, 2009) Finally, the social interaction between the researcher and the researched generates data in grounded theory The role of the researcher and the participant are intertwined as Richards (2009)

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85 collaboratively by the researcher and the researched (p. 49) having a particular frame of referenc e, influences the process as much as the made is reflexivity. This is the act of comprehending how the researcher, the participants, and the circumstances influence on e another (Glesne, 2011) Robson (2002, p. 22) researcher as an individual with a particular social identity and backg round has an im In addition, theoretical sensitivity contributes to the data collection process and is enriched by personal and professional experiences (Strauss & Corbin, 1990) Professional expe (Strauss & Corbin, 1990, p. 42) comparisons that in turn stimulate the generation of potentially relevant c oncepts and (Strauss & Corbin, 1990, p. 43) McGhee, Marland, and Atkinson (2007) and Neill (2006) propose a researcher make explicit their background (in the form of a reflexivity statement) to avoid prior knowledge unduly inf luencing the research process. Data Analysis There are both tradition specific and general analytic strategies for data analysi s. All three qualitative traditions have strategies and procedures that are similar for identifying and categorizing themes that emerge from the data. However how coding is done differs with each method. According to Richards and Morse (2007) (p. 169) The

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86 data and subsequently conceptualizes (Richards & Morse, 2007, p. 48) DeWalt and DeWalt (2002) referenced a general model of data analysis proposed by Miles and Huberman (1994) that specified three activities: data reduction, data s of selecting focusing, simplifying, abstracting, and transforming the data that appear in (Miles & Huberman, 1994, p. 10) Data display follows data reduction. Data (typically direct quotes) presented in tables, diagrams, or matrices, (DeWalt & DeWalt, 2002, p. 181) The last step is interpretation and verification. This involves making inferences from the data (how things are patterned, what they mean, and what causes them) and then returning to the data for verification (DeWalt & DeWalt, 2002) Glaser and Strauss (1967) promoted the constant comparative method of analysis in grounded theory. Comparing pieces of data is a place to begin, not end, the process of constant comparison. Glase constant comparison process is: While coding an incident for a category, compare it with the previous This constant comparison of incidents very soon st arts to generate theoretical properties of the category (Glaser & Strauss, 1967, p. 106) Creswell (2009) and Patton (2002) both note that what grounded theory offers for a structure are systematic steps or coding pro cedures coding being the fundamental process of analysis in grounded theory. Beginning with open coding where categories are generated. This is followed by axial coding wherein a category is linked to all the

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87 subcategories that contribute to it, and en ding with selective coding where a story is generated about the interconnected categories (Creswell, 2009) Patton (2007) described the process as starting with a basic description followed by conceptual ordering and fina lly, theorizing Bowers (1988) observes that the phases of research (i.e. the literature review, question generation, data collection, and analysis) happen concurrently rather than in discrete steps. This serves the purposes of allowing for flexibility a nd adaptation of the grounded theory project. According to Charmaz (2009), grounded theory offers a flexible set of set of guidelines rather than prescriptive rules and requirements. The research process is nonlinear where sometimes the multiples avenues of inquiry may develop or researchers may find themselves returning to the field after work is nearly completed (Charmaz, 2009) Both Patton (2002) and Creswell (2009) acknowledge that the primary characteristic of grounded theory design is the continuous making of theoretical comparisons of data and categories. Two other tenets of this method are striving for objectivity and th e inductive nature of inquiry. Data Interpretation (Richards, 2009, p. 33) Data becomes germane to the research project when we (Richards, 2009, p. 33) Handling the data well is accomplished by abstracting up from the data through the steps of classifying, coding, distilling, and seeking themes (Richards & Morse, 200 7) In addition to the aforementioned steps, (Thorne, 2000, p. 68)

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88 According to Richards and Morse (2007) (p. 153) in order to transform data from individual occurrences, to genera l categories, to explanatory concepts, and finally into theory. Richards and Morse (2007) describe data transformation in qualitative research as a process of abstraction. The (Richards & Morse, 2007, p. 154) are coding, categorizing, and conceptualizing. Coding is a technique used to generate categories of concepts, themes, and patterns (Richards & Morse, 20 07) After categorizing, the next step of abstraction is conceptualization. In conceptualization, the researcher develops concepts or mental images that are more general and abstract than categories (Richards & Morse, 2007) As categories are developed into concepts, the research theory continues to evolve from descriptive to analytical (Richards & Morse, 2007) Abstraction, according to Richards and Morse (2007) will occur at various points in the process depending on which qualitative tradition is employed. In ethnographic studies, abstraction occurs as data is collected in the field. Abstraction in grounded theory is developed from the data but can also be developed from other pre existing theories. In phenomenology, abstraction occurs only after previous ideas are bracketed and data is collected. Goal of the Research The primary goal of the study wa s to conduct groun ded theory research that result ed in an understanding of the personal meaning of work to, and the employment experiences of, people with CF and ultimately develop a substantive grounded theory of career development applicable to individuals with this disease.

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89 Research Questions The purp ose of the study wa s to answer these research questions f or a sample of emerging adults with CF : W hat is the personal meaning of work? How has the illness influenced their employment choices and aspirations? What are their lived experiences in the workplace? What is the career development process? Th e specific aims of the study were four fold : (a) to gain a deep understandin g about the meaning of work to emerging adults with CF (b) to give voice to emerging ad ults with CF to discover how the illness has influenced their employment aspirations (c) to identify, describe and analyze the employment experiences of emerging adults with CF and (d ) to identify, describe and analyze the process of career development in emerging adults with CF. Methods I sought approval for a pilot study from the Institutional Review Board (IRB) at the University of Florida prior to the conduct of any research. The protocol for the pilot study was approved on December 29, 2010 and fi ve participants were subsequently interviewed in the spring of 2011 On July 14, 2011, the IRB approved a project revision to recruit 15 additional participants and the inclusion on an instrument (Career Development Inventory) Inclusion and Exclusion Criteria for Participants Inclusion c riteria The tar get population wa s: Adults (18 years or older) with a diagnosis of cystic fibrosis Currently working in paid employment (full time or part time) or who have worked in the past twelve months

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90 Exclusion c riteria Subjects who did not meet the above criteria were excluded; this included those who were not d iagnosed with cystic fibrosis; those who were self employed and who had no employment history in the last twelve months. Procedures As th e principle inves tigator, I interview ed ten adult participants with CF who were employed at the time or who had worked in the past twelve months. Similar sample sizes were utilized in the studies inspected in the literature review section (Conyers et al., 1998, Johnson et qualitative research is not computed by power analysis, as is done in quantitative enough and cover the dimensi ons of interest (Sandelowski, 1995) According to Morse (1994, p. 230) saturation occurs and variation is both After analyzing data from the 10 th interview, the researcher conferred with his committee and end ed participant recr uitment categories was achieved. Protection of Participants and Confidentiality The confidentiality of all participants was protected throughout all phases of the study. After obtaining informed consent, participants were assigned an identifying pseudonym This pseudonym was not linked to the signed informed consent. Therefore, there w as no way to link the interview recordings or t ran s cripts to the signed consents. Tr anscripts of individual interviews were kept in a locked file cabinet when

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91 not in use All audio recordings of intervie ws were d estroyed after the contents had been transcribed and verified. Recruitment and Participants The sampling method was a criterion based strategy as described by Miles and Huberman (1994) to obtain a sample in which all cases meet the criterion of CF and having experience with employment. Moreover, a purposive sampling method was utilized in order to obtain information rich cases with a broad array of ages, g ender, and work experiences. Ten p articipants were recruited from the Cystic Fibrosis Founda tion North Florida office and the CF center at UF/Shands. At the CF center, two social workers assist ed with identifying and recruiting potential participants These individuals had contact with potential subjects through normal routine outpatient care a t the CF center. The executive director of the Cystic Fibrosis Foundation North Florida office also assist ed with identifying and recruiting potential participants. The executive director is in contact with potential participants through her duties with the foundation. Instrumentation Interview s and the Use of an Interview Guide The primary instrument of data collection was an in depth interview conducted in a conversational style to elicit rich narrative data. Participants were asked to submit to an i nitial interview and possibly a follow up interview. The purpose of the follow up interview wa s to clarify information obtained at the first interview and verify themes identified during the analysis of the transcripts. The interviews are designed to be l engthy and elicit a narrative rich in detail from the participants. The interviews will be semi structured in nature with open ended

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92 questions and strike a conversational tone. An interview guide will serve as the framework to conduct interviews however; this will be a flexible document such that it might be revised af ter each interview. Career Development Inventory making the researcher administer ed the Career Development Inventory (CDI) (Thompson, Lin deman, Super, Jordaan, & Myers, 1981) an 80 item instrument comprised of four scales of 20 items each: Career Planning (CP), Career Exploration (CE), Decision Making (DM), and Knowledge of the World of Work (WW). These scales measure vocational attitudes and competencies critical to career decision making. The CDI has been widely used as a career development tool and has utility for physically disabled populations (Eby, Johnson, & Russell, 1998) The CDI and its subscales have been found to have adequate reliability (Thompson, Lindeman, Super, Jordaan, & Myers, 1981) Pinkney and Bozik (1994) reported acceptable internal reliability coefficients for three scales: CP (.89), CE (.78), and WW (.84) but urged caution regarding the fourth DM (.67). Furthermore, the CDI demonstrates evidence of predictive validity (Hartung 1997) After reviewing the literature and psychometric properties of the CDI Savickas and Hartung (1996) as a measure of (p. 185) Data Analysis and Interpretation Procedures Interviews were audiotaped and transcribed verbatim. The interview transcripts were then verified against the audio recordings. Fol lowing that, the transcripts were

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93 read several times and the audio recordings will be listened to several times to get a sense of the whole. Additionally, interviews were entered in NVivo software to facilitate man aging and organizing the data. The interview recordings and transcripts were analyzed using the constant comparative method as elucidated by Glaser and Strauss (1967) In this technique, continuous comparisons are made of the entirety of the interv iew data collected. Comparisons are made within a single interview and among the set of interviews collected for the study (Boeije, 2002; Charmaz, 2006; Glaser & Strauss, 1967) Data from the i nterview transcripts were coded and examined for emergent themes. These data were then grouped into categories and themes that could be used to describe the experiences of the study participants with regard to career development, and the personal meaning and experience of work The researcher took f ield notes during the interviews and later augmented them immediately following the conclusion of the meetings. Field notes capture d both personal reflections and the context of the interview. Later these field notes contributed to analytic memos about concepts that emerged from the data. The researcher also compare d tran scripts, audio recordings and fie ld notes for any inaccuracies. Furthermore, the researcher document ed the analysis process in an audit t rail in a project journal As the data analysis proceeded, the researcher log ged observations and interpretations about the data, keep track of coding decisions and reasons for categories, revisions, and analytical conclusions. Peer debriefing was utilize d as an added crosscheck and analysis mechanism. The researcher consulted with the qualitative data group within the College of Public

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94 Health and Health Professions on the development of an interview guide. Additionally, the researcher sought consultatio n and f eedback on data interpretations from faculty skilled in qualitative research and feedback from the qualitative data analysis group on emerging themes and the conceptual model. Reflexivity The role of the researcher and the participant are intertwine d as Richards (2006) and the researched (p. 49) rticular frame of reference, which data are made is reflexivity and it is the act of comprehending how the researcher, the participants, and the circumstances influence one another (Glesne, 2011) Robson (2002, p. 22) n awareness of the ways in which the researcher as an individual with a particular social identity and background has an im In addition, theoretical sensitivity, guided by the literature review, is enriched by personal and pro fessional experiences (Strauss & Corbin, 1990) Professional (Strauss & Corbin, 1990, p. 42) for a basis for making comparisons that in turn (Strauss & Corbin, 1990, p. 43) McGhee et al. (2007) and N eill (2006) propose a researcher make explicit their background to avoid prior knowledge unduly influencing the research process. Following this tenet, reflexivity was completed prior to embarking on any data collection analysis, or interpretation. I reflected on my experiences to reveal anything that might

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95 inform my research or influence data analysis and interpretation. An ongoing reflexive process will inform my interpretation of findings. Personal Bias Statement I wish to share how people with CF came to define my research. I began working with individuals with CF as a social worker and rehabilitation counselor never contemplating that I would embark on a research career where they would figure prominently. Now, however, my professional and personal life has been touched by people with CF and alon g the way, I found my purpose. In the fall of 2005, I was employed in a non clinical position performing administrative social work duties at a state agency. I was also in the final semester of a apply the knowledge, skills, and abilities I had acquired in the program. It was in September 2005 that my connection with CF began when I o btained a position as the social worker in a pediatric CF center that serves youth from birth to age 21. Prior to starting this position, I had not encountered anyone with CF and today I estimate I have worked with 150. I jumped into the world of CF whole heartedly and I was warmly received. Aside from performing my duties in the clinic, I assisted patients when they were hospitalized and I raised money for pharmaceutical research by organizing a team for Great Strides the annual CF fundraising walk. As I soon learned, there is much to know about CF. It is a complicated illness affecting the pulmonary, gastrointestinal, and endocrine systems. Fortunately, my patients were willing to teach me how CF affects them not just physically but emotionally, soc ially, academically, and vocationally. I discovered that my patients and families had many unmet needs including emotional, financial, school issues, insurance,

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96 and employment. As I became acquainted with them individually, I developed a greater apprecia tion for my good health and ability to attend school and perform work, two challenges for some individuals with CF Speaking with numerous emerging adults about work spurred my curiosity about employment experiences in CF. Many expressed a desire to work or attend postsecondary education but encountered limitations engendered by their illness. Some have experienced vocational success but too many have not. Their triumphs and struggles in choosing, getting, and keeping employment fostered my desire to stu dy the personal meaning and experience of work. The information I acquired, especially about the vocational consequences of CF, set me on the path to research this issue. I also have a strong desire to advocate for people with CF in employment issues and design interventions that might be beneficial. I feel that my previous knowledge of CF is an advantage in my research. CF is a complex, multifaceted illness that creates some unique conditions pertaining to employment that I now know firsthand. Moreover my intimate connection to the world of CF gives me a theoretical understanding and sensitivity. This will help me to construct meaning from data that someone unfamiliar with CF might not ascertain. I foresee one drawback to my dual role as social worker and researcher. My previous training as a social worker and rehabilitation counselor may at times conflict with the research role of gathering data in an interview. There is the potential for a quasi therapeutic relationship as I would be tempted to fal l into the helping role. This is why I choose to do my research at a different CF clinic than my own employment setting so that I do not duplica te the social work role.

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97 I did not initially set out to become a CF researcher. Nevertheless, after spending time assisting individuals with CF and learning about their experiences at school and work I arrived at the conclusion that research in this area could potentially be of benefit.

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98 CHAPTER 4 PARTICIPANT CASE HIS TORIES Overview In order to provide a contex t for the data analysis, this chapter presents background information on each participant. These case histories are essential to understanding the unique career development and work experiences of individuals with CF. The researcher assigned pseudonyms t o the participants to maintain confidenti ality and protect their identities in the reporting of results therefore only pseudonyms are used in the sections that follow. The case histories are presented in the order in which each individual was interviewed. Participant Demographics Ten individuals with CF between the ages of 18 and 27 agreed to participate in the study. Demographic information was collected via a demographic information questionnaire and through interviews. Table 4 1 provides a summary of participant demographics. The sample was comprise d of six females and four males and e fforts were taken to include diversity in age, gender, disease severity, education, and work experience. However, as CF primarily affects people of Caucasian decent (Y ankaskas et al. 2004) all the participants were white. The Participants Ann Ann was an 18 year old female college student who was employed part time and living with her parents and siblings. Her CF was mild as evidenced by no history of hospitalizatio ns or CF complications, such as malnutrition or CF related diabetes. She described making employment and educational decisions influenced by CF. At one

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99 time, Ann had been a daycare teacher but left on her pulmonologist's advice as she was getting sick freq uently from interactions with the children She spoke of the difficulty resigning given her attachment to the children At the time of interview, she was employed part time in retail sales in a small independently owned establishment that specialized in serving children. Ann discussed her two positions with great fondness expressing that she felt supported by her employers and co workers whenever she was sick. For example, while working at t he store, coworkers would cover for her if she had a coughing fit, needed to take medicine, felt fatigue, or needed to use the restroom. Ann was in her first year at a community college with the intention of becoming a teacher However, teaching was not h er first choice. She had originally intended to become a registered dietician working with children with CF. Her own dietician advised her against this given the concern about infection control. Ann spoke of the effect CF has had on her employment and c areer choices. She verbalized that being a teacher might be incompatible with her condition but she wanted to try. Bob Bob was a 21 year old male college student who was employed part time and living with his parents and siblings. He declared that his ed ucation and work history were unfazed by CF hospitalizations or exacerbations condition is mild as evidenced by his report of no hospitalizations as an adult and no CF exacerbations. He was hospitalized as a child when he received surgery to remov e nasal polyps. Nonetheless, CF influenced his employment choices. At the time of interview, he was employed in a movie theater as an usher taking tickets and cleaning up the theaters He had been at this position for over three years working part time d uring the school year and full time in summer. Previously he had worked in a restaurant as a

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100 cook He shared that he did not think being a cook was a good idea because he would Furthermore, h e reported being slower than the other cooks because he was continually stopping to wash his hands after coughing. He shared that his current position was more compatible with his condition since the duties are not as taxing and he could excuse himself wi thout being noticed to cough or use the restroom. He has concern about his contact with the public and acquiring infections and thus he avoids individuals he suspects are sick. Bob is selective about disclosing his condition and has only shared with a fe w of the staff. Bob was a junior at a state university where he was majoring in electrical engineering He spoke of his early career interests, such as wanting to be in the medical field, but surrendered this pursuit to a realization that it was unsuited to his having CF. Chris Chris was an 18 year old male college student who was employed part time and living with his parents and siblings. He was working in an ice cream shop (his first job). He disclosed some negative work experiences related to CF. At the shop, he was responsible for making the various ice cream flavors; therefore, he does not work directly with the public. He expressed overall satisfaction with his duties but did not feel supported by his manager or coworkers. Chris did not initiall y disclose h aving CF during the hiring process however other workers observed his frequent cough. He eventually disclosed in confidence to one worker and this individual told the manager, which created some conflict for him. Subsequently he started tryi ng to suppress his cough and he acknowledged that his physician discourages cough suppression. Additionally, the cold environment of the store freezer aggravates his CF by giving him

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101 chest tightness. As a result of these experiences h e is selective about disclosing his CF at work. Chris is a full time freshman at a state university where he is a pre med student His goal is to become a dermatologist and he said this was out of a desire to help CF is mild as evidenced by no history of hospitalizations or CF related complications. Debbie Debbie was a 21 year old female college student who was working part time and living with her parents and siblings She had severe disease evidenced by two double lung transplants, numerous hospitaliza tions, and the complication of pancreatic insufficiency. Debbie expressed that her education and employment choices as having been significantly influenced by CF exacerbations and hospitalizations. Debbie had first worked for two years as a cashier for a major grocery store chain. As her disease progressed, she found she did not have the stamina and endurance necessary and she resigned from this position. Debbie shared she needed something less physically demanding and with more flexibility. This is wha t prompted her to seek employment as a nanny. She noted the benefit of working in this capacity is that her employers have been more understating when she has been sick or hospitalized. At the time of the interview, she was a nanny and baby sitter for nu merous families. Debbie was a ttending a state university where she was majoring in psychology with the intention of becoming a counselor specializing in children With her exposure to hospitals, she felt she had the necessary compassion to help children with behavioral health needs. Debbie had originally been interested in journalism but found this ill

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102 suited to her because it was fast paced, stressful, and the work environment too demanding. Elsie Elsie was a 23 year old female high school graduate who was not working and lived with her mother. She had severe disease evidenced by numerous hospitalizations, pancreatic insufficiency, and malnutrition. Elsie described an educational and work history often disrupted by CF exacerbations. At the time of her interview, Elsie was n ot in scho ol and had not worked fo r 4 months Most recently, Elsie was a seasonal sales associate with a major department store chain during the holidays. After a week on the job, she developed pneumonia and was hospitalized for on e month. Returning to work in mid December, she felt alienated as though she was treated differently and viewed as sick. Her hours were cut and she sensed management had no understanding or sympathy. Her last day of work was Christmas Eve 2011 first job was at age 17 with a chain restaurant doing food preparation and later she was promoted to assistant manager. Her experience at the restaurant was positive and she noted they were understanding of her frequent illness related absences. She wor at the same time as the restaurant job but this was short lived as she was hospitalized and subsequently terminated Elsie expressed a desire to pursue vocational training, such as cosmetology or dental hygiene, and has ma de three unsuccessful attempts since graduating high school. She has decided to wait until she feels well enough to complete a program without interruption before trying again

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103 Fred Fred was a 27 year old male college graduate who was w orking full time and attending grad uate school. He lived with his significant other and a roommate. Fred stated that CF did not complicate his educational and work history, as he was already an adult at the time of his first hospitalization. At the time of the intervie w, he was working full time teaching English as a second language to adult foreign exchange students. Prior to this, he was a middle school teacher for two years. He was enrolled h is w ork experiences as positive Fred has milder disease evidenced by a history of one hospitalization several years ago for a mild CF exacerbation Grace Grace was a 22 year old female high school graduate who lived with her significant other and roommates. At the time of the interview she was not working. She has severe disease as demonstrated by a history of multiple hospitalizations, pancreatic insufficiency with poor nutritional status. Grace described the impact of CF exacerbations, which contributed t o work disruptions. Grace ha s a work history consisting of one year in retail nearly a year in a restaurant, and most recently three years as a nanny. However, illness related absences compromised her retail and restaurant employment which lead to her last employment setting Grace had most recently worked as a nanny and found this rewarding. Moreover, she found this type of work afforded her the flexibility she needed to cope with unpredictable disease exacerbations Grace was n ot enrolled in colleg e at the time of the interview but had earned some college credits. She cited her financial

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104 circumstances as the reason she could not return to school. Her career aspiration is to become a kindergarten teacher. Hal Hal was a 21 year old male college grad uate working part time and living with his parents and younger brother hospitalizations or CF exacerbations. His employment history consists of working five summers as a lifeguard, swim instructor, and a thletic coordinator at a county recreation department. Additionally, he was a research assistant while an undergraduate. He characterized CF as non consequential to his education or employment history and expressed positive feelings about his employment experiences. Nevertheless, CF pursuing a career in medicine. Later he decided that the physical demands of medical school and risk of exposure to infection were too great He switched to psychology and from a state university. At the time of this interview, h e wa s in the process of applying to masters programs in counseling psychology with the goal of becoming a therapist Ingrid Ingrid was a 2 1 year old female college student employed part time and living with her parents hospitalizations, lung colonization by a particularly harmful bacteria, and CF complications. She disclosed an education and employment history disrupted by unpredictable CF exacerbations She missed much of the 12 th grade and later a semester of college with illness and hospitalizations. In addition, Ingrid shared that CF influenced her career choice.

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105 At the time of the interview, she was working three part time jobs (retail, line dance instructor and waitress ing ) while attending community college. Ingrid has been working since high school when she took her first position as a server with a large restaurant chain. She characterized her work experiences positively by virtue of having s upportive employers and coworkers Ingrid is majoring in public relations at a community college. She expressed a desire to pursue a career in which she could be an advocate for others with CF. Jackie Jackie was a 21 year old female college student living with two roommates. exacerbations. She reports a history of education and work disruptions prompted by CF exacerbations. She was not working at the time of the interview and had last worked about three months prior. Jackie had an extensive work history consisting of retail, restaurant, and clerical positions. She worked as a sales associate in a clothing store for a year followed by being employed as a gr ocery store cashier. She worked briefly in a clerical position at an engineering firm and most recent ly as a server in a restaurant. She spoke of the adjustments she had to make to her work schedule to accomplish her CF treatments and changes in employme nt to accommodate her decreasing stamina and endurance. Jackie was degree but had not declared a major at the time of this interview She was interested in nursing or teaching and she had to miss a few semesters due to ill ness and stated this put her behind in completing her degree

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106 Descriptive Attributes In order to make comparisons, the researcher grouped participants by various attributes. First, participants were grouped by disease severity either having less severe or more severe disease (assessed by their reports of hospitalizations and/or CF related complications or a lack thereof). In this sample, five of the ten participants were judged to have more severe disease and these were all older, female, participants. T he fact that females in this sample had worse disease was not surprising. Gender differences in disease severity and mortality, with females at a disadvantage, are well documented (Kulich et al. 2003; Mogayzel & Flume, 2011) Second, participants were gr ouped by age range (age 20 or younger and age 21 and older). Two participants were under age 20 and eight were age 21 or older. Older participants were the ones reporting more severe disease and greater disruptions t o education and work pursuits. Third, participants were classified by RIASEC career categories (Realistic, Investigative, Artistic, Social, Enterprising, or Conventional; Holland, 1997 ) based on the career aspirations they reported. Of this sample, the majority (9) were pursuing careers in th e Social domain and notably, in helping related professions. The tenth participant was pursuing a career in electrical engineering, which falls in the Realistic domain. Lastly, participants were classified according to their outlook on disclosing CF to e mployers and coworkers. Six participants were open to disclosure while four had a tendency towards being guarded about disclosing facts about their condition The re are various reasons for d isclosing or not disclosing Some individuals with openness to disclosure noted the feeling of empowerment and disavowed any shame in having CF.

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107 While those with a guarded posture expressed wanting to maintain privacy and voiced concerns about disability related discrimination. Ta ble 4 1 Participant d emographics Pseudonym Gender Age Work Status Highest Education Level Ann Female 18 Part time SC Bob Male 21 Part time SC Chris Male 18 Part time SC Debbie Female 21 Part time SC Elsie Female 23 Not working at interview HS Fred Male 27 Full time BA Grace Female 22 Part time SC Hal Male 21 Part time BA Ingrid Female 21 Part time SC Jackie Female 21 Not working at interview SC Note

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108 CHAPTER 5 FINDINGS Research Overview The data analysis and interpretation process advanced through a series of four steps, while employing the fundamental strategy of grounded theory the constant comparative method of analysis (Glaser & Strauss, 196 7) In step one, interviews were transcribed as they were completed. Then transcripts were verified against the audio recordings. Next the researcher re read transcripts and repeatedly listened to the audio recordings to get a sense of the complete picture Subsequently, a project database was created using NVivo 8.0 sof tware to facilitate managing, organizi ng, and coding the transcripts. In step two, the researcher performed line by line coding in NVivo and compiled a comprehensive list o f codes assigning each a brief description. Over the course of the research project, code descriptions were refined to achieve ever greater specificity of terms. Furthermore, the researcher create d memos of impressions after listen ing to tapes and re rea ding transcripts In step three, the researcher grouped the codes by theme categories and then arranged those themes in a hierarchy. In step four, the researcher continued the constant comparison of codes and categories. Some codes were merged and other s moved to new theme categories in a continuous process of building, developing, and refining the project. During the comparison approach, the researcher look ed for p atterns, relationships, and ultimately identified emergent themes that contributed to a g rounded theory of career development of individuals with CF embodied by an ec ological conceptual framework. Recruitment for the study ended

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109 when this researcher was satisfied that saturation of the existing categories was achieved. Career Development and Disability: An Ecological Approach An ecological orientation points to the additional importance of relations between systems as critical to the child's development (e.g., the interaction between home and school, family and peer group) (Bronfenbrenner, 1974) The conceptual basis for the model presented in Figure 5 1 is the ecological framework of career development of people with disabilities initially proposed by Szymanski and Hershenson (1998) and later refined by Szymansk i et al., (2003). Szymanski and colleagues (1998, 2003) proposed an ecological model to make sense of work and career development. In their model, career development is understood in terms of five nested hierarchical constructs: individual, contextual, m ediating, environmental, and outcome factors. The person along with their individual physical/psychological characteristics interacts with contextual, mediating, and environmental factors result ing in employment outcomes (Szymanski & Hershenson, 1998; Szymanski et al. 2003) (1979) groundbreaking ecological model of human development, however; the emphasis is on career development of individuals with disabilities. takes a systems approach to development in that the child interacts with various people or systems (initially parents, siblings, grandparents; and later daycare, peers, church, etc ). These systems facilitate develo pment. This interaction is mutual in that the child acts on/influences the environment, and conversely, the environment influences and acts on the child. The immediate environment or system of the child is the microsystem which includes family, daycare/ school, peers, neighbors, and the physical

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110 environment among others. The interactions between the various microsystems are known as the mesosystem Broad systems that surround the child are part of the exosystem (made up of extended family, friends, and in general the society at large) and the macrosystem expresses the influence of culture on the microsystem. individual and the context in which they live. Individual characteri stics incorporate physical and psychological attributes of the person such as gender, race, physical and mental abilities, interests, needs, and values. Contextual factors account for the influence of socioeconomic status, family, and education. Mediating factors are t hree interrelated belief systems that affect the relationship of people and environments that include individual, cultural, and societal beliefs Individual mediating factors pertain to beliefs about personal abilities and traits such as self concept, work habits, self efficacy, career maturity, vocational identity, and adjustment to disability. Cultural mediating factors refer to general worldvi ew, religious beliefs, and racial identity. Societal mediating factors denote stereotypes, discrimination, and attitudes tow ards people with disabilities. Environmental factors are features of work and other environmen ts that influence individual behavior. These include the culture of the employment setting, the task requirements, the characteristics of co workers, and the physical environment of the setting. Outcomes, the fifth construct, describe the results of inte ractions between the other constructs, for example, job satisfaction, persistence, tenure, productivity, and job (1998; 2003) highlights the role of the dynamic interaction between the individual and environmental factors in determining

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111 career development. Moreover, this model emphasizes the fact that through reciprocal interaction between the individual and environment, each one influences the other.

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112 Figure 5 1. Conceptual Model: Key factors that influence work e xperiences and career d evelopment in individuals with cystic f ibrosis (adapted from Szymanski, Enright, Hershenson, & Ettinger, 2003)

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113 Ecological Model of Career Development in CF Analysis and work experiences, employment decisions, and career development process. The major themes and sub themes in the current study unfolded in terms of ecologically based interacti ons. There is ample research suggesting that the multiple environments in which individuals reside influences career development (Betz, 2002; King & Madsen, 2007; Young, 1983) For this study, this researcher propose s a model of key influencers of work an d career development applicable to individuals with CF derived from the ecological framework of career development of people with disabilities proposed by Szymanski et al. (2003) factors, mediating factors, and workplace factors combine to shape work experiences and career development. These broad themes were present for all participants, but specific experiences and outcomes varied by disease severity and gender. The results of the current study are reported within the framework of the conceptual model in Figure 5 1 Individual Characteristics At the core of the model is the individual with their personal traits. Individual characteristics which were influential in this study we re a set of interrelated physical properties (age, gender, and disease severity) and a set of psychological properties (altruism, persis tence, and illness appraisal). Age, Gender, and Disease Severity Age, gender, and disease severity accounted for some of the variation in the observed career development patterns. The sample of ten participants spanned the

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114 ages of 18 to 27 and was comprised of six females and four males. Participants described their health status as ranging from mild to severe and therefo re were grouped by two levels of disease s everity for comparison purposes. The levels are defined based on whether individuals have a less severe or more severe disease (assessed by self reports of hospitalizations and/or CF related complications or a lac k thereof). In this sample, five of the 10 participants were deemed to have more severe disease and these were all older, female participants. The finding that females in this sample had worse disease was not surprising as gender differences in disease s everity and mortality, with females at a disadvantage, are well documented (Kulich et al. 2003; Mogayzel & Flume, 2011) The five participants with less severe disease shared a common pattern of career development uninterrupted high school attendance, a fter school and/or summer employment, high school graduation, enrollment in post secondary education, or entering the labor force. The following statements by three participants exemplify their experiences: Fred: W ell for me, on the upper percentage as far as you know lung funct ion and, and performance. G rowing up I would say it had very little influence on my life. Y overheated and, and things like that. And you have to watch, s weating and stuff, but I was very much an indoor person. Always have been Hal: Ra rely, e ven back when I was younger, did I miss school, miss anything. If I did miss something, it would be because of a lack because I was just too tired so any prolonged period of time other than surgeries or anything like that. Ann: But in college, I have be up in the hospital or anything like that so I

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115 The following statements from Jackie are illustrative of the interruptions and disruptions experienced by participants with worse disease. Jackie recalled being ho spitalized as early as age 11: I want to say Because my first memories of being in the hospital and things like that. Jackie reported interruptions during her elementary school years: As far as like bei ng in and out of school, I want to say that was a little hard, because not a lot of teachers knew how to handle like, some, like a kid being out of school and then coming back. So a lot of the time like when I missed two weeks of school, I just missed two weeks of school. Jackie experienced interruptions in college too: happening, becaus e, because taken a lot of semesters off, just because college is a lot harder to coordinate being sick with, I guess. So I take So The five female participants with severe disease described a common pattern of career development. One marked by disruption and interruption frequent illness related school absences, enrollment in hospital/homebound education, withdrawing from post secondary education for illness related reasons, and losing employmen t for illness related reasons. Altruism, Illness Appraisal, and Persistence Of all the personal attributes identified as important, three variables (altruism, illness appraisal, persistence) stood out in their contribution to career development and work experiences. The researcher described the first, altruism, as desire to be in a career w here one can help others. All the participants except one identified a desire to pursue a career where they could be of service to others. Exposure to health professionals from an early age likely accounts for this circumstance as the influence of role m odels has been shown to be highly significant in career choice (Flouri &

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116 Buchanan, 2002; Gibson, 2004) The following statements by Debbie, Grace, Jackie, and Hal are representative of altruistic career aspirations. D ebbie: And so psychology degree for troubled youth and then um probably also get a bi blical counseling degree. So Grace: I love working with little ki around little kids. And I always loved like teaching them things, and watching them learn. And so then whenever I baby sit, because I used to baby sit on t I wanted to do. Jackie : somebody that helps someone else. Hal: So I made a decision to switch to psychology because I could pursue still, you know, helping people. Secondly, the study found participants reported illness appraisals that corresponded accurately with their stated disease severity. I n other words, they expressed realistic appraisals of their health status and this was interpreted as indicating adjustmen t to CF. There were no instances of incongruence between illness appraisal and disease severity noted. Illness appraisals in individuals with less severe disease: Bob: Because outside of keeping the sch edule every morning with doing the respiratory clearance, the vest particularly. And yo unger, the hand clapping. anything. Hal: It's gotten easier over time. Yes for sure. W ell for one, the inhaled medications tha t I used to take, specifically Tobramycin which is now gone. Which is better in the fact that my health is actually better than it was since switching to like Pulmozyme for an example, before we had that, I would do Albuterol which was like 45 minutes and it really did nothing. I would get sick maybe three, four times a year. Now I get sick maybe once or twice a year. So definitely since the newer medications hav e come out, it's been a lot more helpful. Illness appraisals in individuals with more sever e disease:

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117 Debbie: times are a lot better than others. M ost of the time has been in the hospital. Grace: A lot of coughing. And a of your time. Jackie: or like just moving fast. S o I walk a little slower and I do things a little slower Realistic appraisal of illness corresponds with better adjustment, acceptance, and adaptation to chronic illness (Bombardier, D'Amico, & Jo rdan, 1990; Falvo, 2004). As participant indicated having severe disease, they use d expressions consistent with this disease pattern. Conversely, if a participant had mild disease they used descriptions consistent with having a mild course of the illness. The following remarks are illustrative of each subset of the sample. Finally, pe rsistence, defined by the researcher as steadfastly and tenaciously pursuing goals, was characteristic of the majority in this study. Participants expressed resolute attitudes about achieving work and school related goals. The following statements are ref lective of the persistence expressed by the participants. Ann: influenced by CF. And I just want to school or middle school or I hope elementary school. But I want to make it Chris :

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118 try not to let it bother me you know like the only time it really does bother me the only issue. But, liv ing with CF is normally just living my life. But the thing is, the fact that I have CF kind of pushes me to like okay, I kind of want to finish college. Okay, I want my family. I want, I want to be whatever I turn out to be kind of thing. Debbie: M ost of the time has been in the hospital. but I do deal with all the other issues sinus issues, and, and you know, gastric issues. Um, but my day to day life I try to not let it affect me. Um, I am very active. I go to school. Um, I work part time. So I am very active. But it has been, you know, hard at times. Elsie: have to be comfortable w ith my self knowing that I can do it. And you know, I am not going to be really kind of I guess embarrassed or anything of the fact that I am sick. I just have to know that I can do it. Just you know kind of build myself up for it. So. I there eventually. Prior research has demonstrated that persistence is both a prerequisite for school to work transition success and highly desired by prospective employers (Lindstrom, Paskey, Dickinson, Doren, Zane, & Johnson, 2007) Perhaps more import antly, persistence apparently mediates the disease severity career development relationship. Personal Contextual Factors Throughout the interviews, the influence of personal context became apparent. Contextual factors account for the influence of family, education, the health care system, and treatment burden. Influence The influence of parents primarily extended to encouraging participants to pursue post secondary education or employment. None of the participants reported that parents influenced them to pursue any specific career or course of action and just one is in a related field. Instead parents promoted post secondary education or training as a means of achieving economic self suffi ciency. This is contrary to prevailing research

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119 family of origin (Duffy & Dik, 2009) These statements are reflective of parents who promoted educati on : Jackie: I know my mom always wanted me to graduate from high school. And then my dad always expected me to go to college. Like it was never, like a doubt They j ust expect me to go, like, want go, and go, and do something to like be proud of myself, I guess. Ha l: Okay well mom has always pushed college very, you know, very much. All I know is I was you know expected to graduate from college, you know, that was a bachelor's and then it ended up being a master's then it ended up being a PhD. So I'm pulling ba ck to a master's for her but she's still wanting she says. In just one case did a participant pursue a career similar to his parent s: Fred: So I guess the connection in th e fact that, you know both of my parents are kind of involved in education. I mean my mom and my step dad but that, my choice of career. Some parents promoted economic self suffic iency rather than a particular career : Elsie: Grace: Taught me to work hard. To get what I need. To be able to pay for stuff. To get a good job and be able to support myself. Education Educational attainment is an essential component of career development and positive employment outcomes in people with disabilities (DeLoach, 1992; Moore, Konrad, Yang, Ng, & Doherty, 2011) Thus it is promising that all the participants in the

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120 study are at minimum high school graduates. Better still, two have earned their post secondary training but was interuppted by disease exacerbat ions. Educational disruptions, such as being absent from school, were more common in those participants with greater disease severity than those with less severe disease, but by no means universal. Nevertheless, educational disruptions were unwelcome ins trusions as evidenced by the following remarks. Debbie: I went right to college out of high school the first semester. And did one semester. And then I got really sick after that and took a whole year and a hal f off and then went back. D id one class per semester really, or two classes or whatever. So, credits at al l. Be c get through high school. So community college and getting my AA will probably take me a little longer. But be cause I only took like one class the first semester and then two classes the next two semesters. Elsie: I know that I would have already been through college by now. I would have I But like being a nurse, I would love to be a nur se. I know a lot about nursing just being through the whole you know I could never do it because I could never be around sick people. I CF to you know always put me in the hospital or something like that I would have already completed and been on my career now. The n, you know, still waiting to even start college. Ingrid: Of course you have the tune u ps and going to the hospital for the 10 to 14 days and when you have that, you end up missing school and work. All the participants viewed post secondary education or training as a bridge to their careers. This is a positive finding that challenges Lopre (2007) conclusion that childhood disability onset is associated with decreased liklihood of high school completion and entering the labor force.

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121 Health Care System Involvement Ongoing medical management is essential for individuals with CF and thus contacts with the health care system are frequent. The CF Foundation recomends four routine CF clinic visits per year for preventative care. Contacts increase when one is ill or participating in research studies The study found that due to frequent contact with the health care system, participants viewed medical professionals as role models and were especially influenced to pursue careers in helping professions as was noted earlier. The following remarks demon strate the influence of the health care environment. Ann was influenced by her dieticians: Mmm Chris attributes some of his career aspirations to his exposure to health care: So I mean CF and being around hospitals has influenced a lot but I think just the fact that I like science is really what brings me to wanting to be pre med. And then also my family. My grandfather is a dentist. My dad is an echo technician. So you know being around them also enhances my ability, or not Ja ckie was influenced by nurses: For help people, so I felt like it was an all in one type things, and, um, I feel like that, it has a lot of job security, too. Because you always need nurses. The majority of participants were p ursuing careers in helping related professions suggesting the influence of health care providers as role models. There is abundant research on career development in childhood (Hartung, Porfeli, & Vondracek, 2005;

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122 Watson & McMahon, 2005) that supports the assertion that early career exposure is an (2005) reviewed vocational development literature to explore lifespan vocational development and concluded hat children learn about work and occupations has a profound effect on the choices they make as adolescents and young adults, and ultimately, on their occupational careers (2005, p. 412) Treatment Burden The daily medical management of CF is complicated and time consuming such that treatment burden was universally acknowledged by the participants. Each day persons with CF must complete a complex routine of airway clearance therapies, inhaled medications, oral medications, oral pancreatic enzymes, and ing est high calorie meals and nutrutional supplements. The treatment burden of CF amounts to two to three hours per day spent on self care. In order to complete all these tasks, adjustments to work and school are often required. The following statements ar e indicative of treatment burden. Ann: And I just have to get up in the morning before school and do treatments and take my medicine with all my meals. And then I just go about my day whether ing or going to school. I mean i t kind of gets in t he way when I start coughing in front of customers or something like that but for the most part I can try and keep it to myself. But then I have to do treatments at night too so the time management becomes probably the biggest issue. Bob: What happens is, when I am not in school be tch up with the day you know. Yo u know hanging out with a friend or going to stick to. When I have school in the morning and then I can come home. Like when I have a traditional like wake up in the morning, get something done. You know have lunch at whatever time. And then go home at a certain

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123 or twice. Chris: more of like an acceptance. You know more than, oh I have CF. Oh I have to do this, oh I have to do this today before this. I mean like I would do this and I would plan my schedule around whatever I needed t o do. You know cause as you get older you mature and you realize what you have and, what you And even before I was mature, I knew I needed to take care of this. Or else my life would be drastically shorter. I mean it sounds sad but true. Debbie: me, twice as lon g. S o in getting ready for work, I have to take, you know, extra time. Um, and being there on time. And, so, in both jobs I still have to, you know, really think about, okay, what I have to do. Do I have to do an aerosol do I have to do this. And, you know, how do I feel. I have to take that into account as well. Fred: But, you know I was just thinking how, you know eventually it would be nice if I could maybe just work half time. You know? Largely just to, you know keep my energy level to, you know you spend time working out, and you spend time eating right, and cooking, and you know just taking care of myself. And, you know I may have CF, you know have taken care of myself and CF be a 20 hour a week gig. A number of studies (Sawicki, Sellers, & Robinson, 2009; Ziaian, et al., 2006) have reported the high tr eatment burden experienced by individuals with CF which amounts to approximately two to three hours per day spent on disease management. Treatment burden in CF is associated with decreased which an individual f (Pai & Ostendorf, 2011, p. 17) Cowlard, Yorke, and Carr (2011) reported treatment burden contributed to non adherence to prescribed medications and treatments with 60% of their sample reporting non adherence associate d with (p. 3) Poor

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124 treatment adherence subsequently influences numerous medical, psychological, and quality of life outcomes (Pai & Ostendorf, 2011) Mediating Factors Mediating factors are beliefs about work, pe rsonal abilities and traits such as self concept, work habits, self efficacy, career maturity, vocational identity, and adjustment to disability In this domain participants identified three essential constructs which shaped their approaches to employmen t. The personal meaning of work and two coping strategies were identified that mediate the effects of CF on work and career. The Meaning of Work : Independence and Purpose Participants identified beneficial themes pertaining to the meaning of work having a purpose, work being therapeutic and economic independence. These themes are similar to previous investigations of the meaning of work to people with disabilities describ ed psychosocial benefits they experienced by working. Unexpectedly the subset of parti cipants with worse disease, all expressed a desire to work or return to work in spite of their illness. This reaffirms the notion that work is therapeutic. For Elsie, Fred, Ingrid, and Jackie work meant having a purpose. Elsie: J ust being able to get out, you know socializing with people. Being able to I work was that I had something to do, I had somewhere to go. You know, I ike oh Fred: I think for me it interests me because it gives me a purpose, and it gives me a reason to get out of bed in the morning. Ingrid: And it like I really enjoy being able to get up and go to work because I mean you have something to look forward to. I mean it's not like oh hey, I'm gonna

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125 wake up and just sit at home all day and watch TV and of course I got school too but just being able to get up and go and you know you're supporting yourself and making your own money, I think you're doing pretty good. Jackie: something, maybe. Um like, like more than just like myself, if that makes sense. Like having people rely on me like it makes me feel better that I can like pull through for people and be there for somebody. So I feel like it, like it teaches me that and you know, it just keeps me busy, it keeps my mind off of something to do. Something to look forward to. Something to like help the structure of my day In addition, the benefits of work encompass both tangible and intangible aspect s. According to Moos (1986) life, a sense of satisfaction and productivity that stems from completing meaningful tasks, a feeling of belonging to a valued reference group, a bas is for self esteem and personal identity, and a way to earn (p. 9) The aforementioned benefits are embodied in the following remarks. Ann and Elsie described the sense of be longing that work imparts: Ann: CF, like I can do normal things like everyone else. Elsie: Yeah, it did as a teen like you know working kind of makes me feel like there Ann, Fred, Grace, Hal, and Ingrid expressed the ability to achieve economic self sufficiency: Ann: on my parents for money. And I have to pay for my own car and rent and stuff like that. So it, I mean it Fred: J ust the fact I mean the financial fact that, you know I mean I, lot. And you have traveled a lot, and I want to, um, you know continue to travel all. And, you know I have a few nice things, and you know nice things for my kitchen. And, you know things that like that so the fact that work is

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126 important just to earn money. Grace: To be able to pay for stuff. Hal: Um, I like that I'm able to actually, you know, pay for my own things. I've never really had to pay for anything or want fo r much, um, but I've always been able to help mom by because CF costs a lot. So there's not always a lot of money. I mean there is, we're uh, as far as like clothing or extra things that I wanted, I would purchase tho se, video games. Ingrid: Really it's just making my own money and being able to support myself. Finally, participants spoke of the reward of socialization: Ann: boss and with all the other girls that work at the store. And even with environment where I work, too. Elsie: I never really minded working through my senior year because, you know, I had m place so you know, I saw everyone anyways. And so you know just I really like had no problems with working it. Just something, that was exciting to me. Ingrid: And for me but, um, I like I think my favorite part, the most rewarding part of any of my jobs is actually just being able to socialize with other people because I mean the more you talk to somebody you can learn their story and they learn your story and especially when it co mes to the CF, you're spreading that word. Work is central to individuals with and without disabilities (Dutta et al. 2008; Szymanski & Hershenson, 1998) and contributes to life satisfaction (Judge & Watanabe, 1993) England (1991) (p. 111) Work had varying meanings for each participant yet the study confirmed the positive effect of work in their lives.

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127 Downplaying CF and Occupational Compromise The other mediating factors observed in this study are downplaying CF and occupational compromise, two coping strategies that result from p erception of illness order to cope with health related difficulties. self regulatory model (1997) w hich describes the ways in which individuals respond to health threats. The self regulatory model postulates that individuals develop cognitive and emotional representations of their illness that generate problem oriented and emotion based coping strategi es Therefore, illness perceptions influence how one copes and responds to adverse health conditions like CF In this study, the resulting coping responses observed were downplaying CF and occupational compromise. The researcher defined occupational com promise as, having to make compromises in career and occupational endeavors owing to CF. Downplaying CF was conceptualized as de emphasizing the significance of CF on career and life. Participants in the study downplayed the significance of CF on their da ily life. This was especially noteworthy for those five with more severe disease who were working or expressed the desire to work in spite of worse illness. This finding is consistent with previous reseach reported in Chapter 2 that people with CF are wo rking despite having severe disease. Furthermore all participants described making various types of concessions or occupational compromises to CF, for example, adjusting work hours to accomodate treatment schedule, changing employment, altering career aspi rations, and avoidance of infection. Occupational compromise was widespread in the experiences of the

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128 participants though not viewed as problematic but rather part of life with CF. Some examples of the compromises are given in the following segments. Ann: And also being around kids during flu season and them hugging me all the when the doctors were li ke you really need to think about stopping your job. And s o then I had to make the decision to do that or else I would continue to Debbie: W thought that I was going to be a journalist. I always thought I was goi ng to be a news reporter s ince I was little, like elementary school. I did new s reporting in high school and everything. And then all of a sudden in college, right after I had an in t ernship, at {news agency} um I just, something clicked ep up here you know. S Jackie: No, I us ually schedule or ask to be scheduled or have my availability on the correct like uh times so that I have time for everything else. So, because at {grocery store name}, after I told them um, they fixed my schedule to where I y, or I could go home early, or just anything like that. Hal: And then of course there's the issue of if you're in a hospital type setting for most of your life, you're most likely going to catch something, which could be bacterial infection, and that c ould be bad for my lungs. So private practice is where I'm kind of leaning towards or you know somewhere where I could maybe a counseling center or something where I will be less likely to run into the most severe sickly people, more mentally sick than ph ysically sick. Regardless of disease severity downplaying CF and occupational compromises were pervasive. These mediating factors are interpreted as coping strategies. Snyder and Dinoff (1999) defined diminishing the phys ical, emotional, and psychological burden that is linked to stressful life events and daily Moreover, coping strategies have been emphasized as an essential component of living with life threatening diseases (Fok, Chair, & Lopez, 2005) These strategies are therefore adaptive ways of coping with the stressors inherent in CF.

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129 The World of Work Environment Environment factors These include such features as the culture of the employment setting, the task requirements, the characteristics of co workers, and the physical establishment of the setting. At the environme participants identified three constructs of importance to their work life (employer and co worker support, disease disclosure, and workplace concerns). Employer and Co worker Support All the par ticipants in the study had work experience. Eight were working at the time of the interview and two had recent work experience. Every partici pant but one reported they perc e i ved support from superiors and coworkers. In fact, sympathetic employers and co workers were a critical source of encouragement. Having supportive supervisors and coworkers is crucial for maintaining employment and obtaining needed accommodations (Gewurtz & Kirsch, 2009) Furthermore, employers and cowor kers who know the disability provide more understanding, acceptance, and support (Gewurtz & Kirsch, 2009) employer/coworker support. Ann: Well right now boss and with all the other girls that work at the store. Debbie: The manager actually knew me personally. He went to my church. That was definitely a benefit. But any job that you h ave, obviously they need to depend weeks. ome people are more understanding than others. Debbie: O bviously I know my body and I know when I have to cough.

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130 coming. So, at {store name } it was a little harder. B at the cash register. But they, they always said, you know, if you need to use the restroom or if you need a break then let somebody know and somebody will come and relieve me. So I did that on occasion. I would, you know, have somebody come relieve me and I could take a minu te or two and go to the restroom. And just cough or whatever I needed to do. So t hat was always available to me. Disease Disclosure In order to gain support or accommodations, disability disclosure at work becomes an important consideration as CF is a h idden disability. Attitudes towards disclosing CF were mixed. Six participants were open to disclosure while four had a tendency towards being guarded about disclosing. The reasons for disclosing or not disclosing vary. Some individuals with openness t o disclosure noted the feeling of empowerment and disavowed any shame in having CF. While those with a guarded posture expressed wanting to maintain privacy and voiced concerns about disability related discrimination. A recent study of disclosure practice s by patients with CF highlighted this complicated decision. Modi, Quittner, and Boyle (2010) reported that 51% had disclosed to supervisors and 39% disclosed to coworkers. The strongest influences on the decision to d isclose are perceived risk of a negative reaction and perceived limitations compared to healthy coworkers. openness about disclosing CF on the job. In the cases where part icipants disclosed reactions were positive and supportive. Ann: completely understands. And just all my bosses have always been really I had to come out and tell her in case anything ever happened. She would see me eating and taking pills so I just had to tell her up front and everything.

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131 Debbie: It was a little more difficult but I did inform them of my situation and they were awar e. Um, which was a risk that I took of telling them everything but I you know, s o I did need to tell them. Elsie: Ye ah. {fast food restaurant} I told the m that I had CF. But when I got hired at {fast food restaurant} I was only in the hospital maybe once a year. So I told the be cause my mom always says, just make sure you tell them you know just so that they tell me. So I had told all of the oblem. Hal: But the facility leader, he does know and he knew from the beginning. I told him you know listen this is what is going to happen with me. If somebody passes out, I probably will not be able to perform CPR as long as another person will. I probably shouldn't perform it at all just beca use it could, perhaps be life threatening for me if I wa s to completely exhaust myself. So I just informed him of that and everyone knew and I mean, the people I worked with were all friends of mine so they all knew as well. So it really was kind of like an informal, just uh by the way this is what's happening with me There's nothing I can do. I scheduled them three months in advance, and everything worked out with that. A minority were guarded disclosing CF mainly out of concerns about discrimination. Bob: I try never to. I try never to. Like I said my friends know because they come over and hang out at my house and they see the respiratory machine. The vest machine. fferently when you first meet them Like if I were to come up to you and to meet you for the first time and I was like oh I have cystic fibrosis and you find out what it is. It so unds much worse than it is. Chris: think

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132 necessary to um tell her. Jackie: people look at that as something So when the time comes, you bring it up. usually tell anybody. After not disclosing, Chris had the negative experience of betrayal by a coworker. Chris: Apparently it was one day my manager was talking about how I was coughing a lot and then she finally t my place to tell people not really necessarily for you. Workplace Concerns Within the workplace participants expressed concer ns about job demands and the work environment. For them it was important to have certain accommodations. For instance, flexible scheduling, ability to take breaks, take medication, or perform treatments at work. In the work environment it was helpful to have close access to bathrooms, avoid airway irritants, and avoid risk of infections. These statements are representative of concerns about job demands: Elsie: you know just kind of relax and not be so, you know, high strung at your job. food restaurant} is they were relaxed and you know you could sit down when you needed to. They understood that you know know, that easy. So you were able to like take ten minute breaks and stuff like that. Debbie: J ust standing on my feet for so long. Fred: I think a career in education probably is one that might be a little more difficult for, for CF, or, you know because you are always on your feet. Um, but you You know, and I t hink teaching makes that really hard. You know because

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133 The following statements are representative of concerns about avoiding infection: Bob: looks kind of sickly I ki nd of do stay away from them. Chris: previou s is that if I ever wanted to be a doctor I would probably never be a respiratory doctor. You know. Cause dealing with CF patients, me being a diffe rent such as dermatology. Debbie: Then in the job itself, um, obviously I have, even at the babysitting job and at {store name}, I always had hand sanitizer on me. Um, and I would just um if somebody was coughing or really sick or whatever I would just stay away from them. You know, at {store name} I was able to just kind of not get near them. You know, just kind of avoid them. Outcome Employment/Career Patterns Outcomes, the fifth construct, describe the results of interactions between the oth er constructs, for example, job satisfaction, length of tenure, employment patterns, productivity, and job stress. The outcome of interest in this study was the process of career development. Two patterns of career development outcomes emerged from the d ata the unin terrupted and the interrupted. The uninterrupted pattern, closely resembling the path taken by healthy peers, is a seamless transition from school to post secondary education or work. The five participants with less severe disease had in com mon, the uninterrupted pattern of career development continuous school attendance, after school and/or summer employment, high school graduation, enrollment in post secondary education or entering the labor force. The interrupted pattern of career development is marked by interruptions and disruptions in school and work and an uneven transition path from school to post

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134 secondary education or work. The five female participants with severe disease had in common, the interrupted pattern of career deve lopment. One marked by disruption and interruption frequent illness related school absences, enrollment in hospital/homebound education, withdrawing from post secondary education for illness related reasons, and losing employmen t for illness related rea sons. Age, gender, and disease severity are physical attributes that accounted for some of the variation in the observed career development patterns by their effect on stamina and endurance. However, their effects were mediated by influential intrinsi c psychological variables (altruism, persistence, coping strategies) and motivational variables (meaning of work). These offsets were especially evidenced in participants with more severe disease who were working or in school or both despite advanced dise ase. Grounded Theory of Career Development in CF The preceding sections demonstrated the complex interplay of numerous constructs (individual characteristics, personal contextual factors, mediating factors, and the environment) that collectively influenced career development in this sample and became the basis of a theory grounded in the data. An interactional ecological process that began the same way for all the participants but proceeded along divergent paths illustrates the grounded theory of career de velopment in CF that emerged from this study Career development commences early in life and continues during the school to work to life transition Initially, parents and caregivers guide the process. Later on, health professionals become an influential set of role models for the developing child This may correspond with the frequency of visits throughout their formative years. A

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135 child with CF typically makes four routine clinic visits per year and is seen more often when sick. In the current study, the majority expressed a desire to pursue occupations in helping related professions Medicine, nursing, counseling, and teaching, were cited as career aspirations As the child ages, they develop a perception of illness and related coping strategies Th is illness perception i s a mental about the disease that develop in order to cope with health related difficulties. Illness appraisal and disease severity influence p erception of illness These in turn influence h ow one copes with CF via the formation of coping strategies The participants in this study employed two coping strategies downplaying CF and occupational compromises. Finally, career development patterns will vary based on physical and psychological ch aracteristics of the person. The physical attributes of age, gender, and disease severity along with personal context accounted for some of the variation in the observed career development patterns by their effect on stamina and endurance. However, influ ential psychological variables (altruism, persistence, coping strategies, meaning of work) and aspects of the work environment (employer support, disease disclosure) mediated their effects. The result of these complex interactions is a career development outcome where one of two possible patterns may occur the uninterrupted pattern or the interrupted p attern. The former pattern marked by continuous school attendance, after school and/or summer employment, high school graduation, enrollment in post secon dary education, or entering the labor force. The latter pattern

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136 marked by interruptions and disruptions in school and work and an uneven transition path from school to post secondary education or work. International Classification of Functioning, Disabili ty, and Health The World Health Organization framework, the International Classification of Functioning, Disability, and Health (ICF ; 2001 ), is a classification system for the description of health and health related states that provides a lens by which to understand functioning and disability (De Kleijn De Vrankrijker, 2003; Stucki & Rauch, 2010) The ICF provides a context for determining the influence of CF on career development and employment. Similar to the ecological conceptual model that emerged from this study, the ICF model depicts the reciprocal interaction of numerous factors: health condition, body function/structure, activity, participation, environmental and personal factors. Specifically, t he current study highlights four aspects of the ICF model: activity, participation, environmental factors, and personal factors. Activity and participation were reflected in the treatment burden, educational/employment interruptions, and workplace concerns evidence d in the study. Environmental factors were represented by job tasks, the physical environment of the workplace, disease disclosure, and employer and co worker support. Finally, age, gender, and disease severity represent personal factors reflected in the ICF model. The interplay of the ICF domains of activity, participation, environmental factors and personal f actors encompasses the realm of experiences that a n individual with CF encounters navigating the world of work which for some of the study partici pants these factors hindered the career development process.

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137 CHAPTER 6 CAREER DEVELOPMENT INVENTORY The Career Development Inventory (CDI) was utilized to augment the qualitative interviews and thereby better understand the developmen t. This measure was included as a secondary information source about the participants rather than for statistical analysis. The CDI ( Thompson et al., 1981) is an 80 item instrument comprised of four scales of 20 items each: Career Planning (CP), Career Ex ploration (CE), Decision Making (DM), and Knowledge of the World of Work (WW). These scales measure vocational attitudes and competencies critical to career decision making. The CDI also reports on three composite scales : Career Decision Attitudes (the c ombination of CP and CE), Career Decision Knowledge ( the combination of DM and WW), and Career Orientation Total ( t he combination of CDA and CDK). These composite scales exist to provide a more reliable mea sure of attitudes toward careers and knowledge of careers and the work wo rld of choosing a profession (Savickas & Hartung, 1996) The instrument is recommended for use in career counseling, career planning, and vocational research (Levinson, Ohler, Caswell, & Kiewra, 1998) The CDI and its subscales have been found to have adequate reliability ( Leveinson et al., 1998; Thompson, L indeman, Super, Jordaan, & Myers, 1981) Pinkney and Bozik (1994) reported acceptable internal reliability coefficients for three scales: CP (.89), CE (.78), and WW (.84) but urged caution regarding the fourth DM (.67 ). Furthermore, the CDI demonstrates evidence of predictive validity (Hartung, 1997) Descriptions of the CDI scales are presented in Table 6 1

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138 Table 6 1 CDI terms and d escriptions Scale Description Career Planning (CP) Career Planning represents degree of involvement in thinking about future and how well various occupations fit Career Exploration (CE) Career Exploration represents how well one has used quality resources in planning activities. Decision Making (DM) The scale measures the ability to apply knowledge and insight to career planning and decision making. World of Work (WW) World of Work Information represents the fund of knowledge one has about occupations and the world of work. Career Development Attitudes (CDA) Composite scale combining CP and CE which reflects career attitudes. Career Development Knowledge (CDK) Composite scale combining DM and WW which reflects overall career knowledge. Career Orientation Total (COT) Composite scale combin ing CP, CE, DM, and WW that reflects career maturity. Note: Adapted from Thompson et al., 1981 CDI Results Eight of the ten p articipants completed the CDI for this study The instrument was incorporated in the study (with IRB approval) after five interviews were already completed. Subsequently the first five participants were mailed the instrument however only three responded The next five participants were administer ed the instrument immediately after their interview was completed. Results of the CDI were not reviewed with participants. Scores on the CDI, at and above the 75 th percentile are considered high scores indicative of better levels o f career development (Th ompson et al. 1981) An average score is between the 40 th to 60 th percentile suggesting the scor es are similar to others on his or her grade level While s cores at or below the the 25 th percentile indicate deficits in career development (T hompson et al. 1981 ). Table 6 2 presents an overview of CDI results and is followed by an individual review of each participant.

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139 Table 6 2 CDI results by p articipant CDI Scale Pseudonym CP CE DM WW CDA CDK COT Ann 26% 53% 94% 34% 34% 77% 57% Bob 16% 19% 44% 7% 16% 17% 11% Debbie 76% 50% 12% 2% 56% 2% 19% Fred 65% 7% 3% 3% 24% 3% 3% Grace 95% 89% 42% 75% 95% 49% 92% Hal 98% 93% 22% 59% 97% 29% 94% Ingrid 88% 61% 3% 14% 83% 4% 32% Jackie 67% 58% 58% 59% 60% 61% 67% Note: CP=Career Planning, CE=Career Exploration, DM=Decision Making, WW=World of Work, CDA= Career Decision Attitudes, CDK=Career Decision Knowledge, and COT= Career Orientation Total Ann Ann was an 18 year old employed female first year college student with a clearly defined career goal of becoming an elementary school teacher. She scored in the low range on CP and average range on CE, indicating little career planning and exploration. However, this likely reflects the fact that she is certain about h er career choice rather able to make career related decisions with ease. This is consistent with her employment record and the fact that she has made a career choice. Her low score on the WW scale likely reflects her youth and limited work experience. Ann scored in the average range on the COT, meaning that her overall level of career maturity is comparable to her able bodied peers. Bob Bob was a 21 year old employed male third year college student with a definite career goal of becoming an engineer. His scores were all in the low ra nge on each scale except for DM He scored in the average range on the DM scale (his highest area) indicating he applies adequate decision making knowledge and skills to career

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140 problems. It also is reflective of his employment record and the fact that he has made a career decision. H e scored low on CP, CE, and WW indicating little career planning, exploration, and knowledge of the world of work. However, his low scores on CE and CP may reflect that he is decided about his career choice thus less exploration and planning are necessary and lengthy work history. During the interview, he expressed a defined career ambition and had specific world of work knowledge about his chosen field such as the education and internship req career maturity is lower than others. Debbie Debbie was a 21 year old employed female college student She has a clearly defined career goal of becoming a counselor specializing in children. Debbie performed well in two areas, poorly in two areas, and had a low overall score. She scored high on CP and in the average range on CE. These are consistent with her interview where she expressed knowledge of her chosen field. Debbie had low scores on the DM and WW scales, which indicate she may have difficulty with career or work related decisions and little knowledge of the workplace. Debbie performed better on the composite attitude scale (CDA) than the composite knowledge scale (CDK) suggesting she has a good attitude about work but has less knowledge of the world of work. This may be related to her work history as a nanny. In addition, she had changed her career path from journalism to psychology at one point, which might indicate some lack of career crystallization on her part, but this performance on the COT was low suggesting her career maturity is lower than others.

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141 Fred Fred was a 27 year old employed male w ee. He has a career His score pattern shows he performed well on the CP scale but low on the CE, DM, and WW. This pattern means that he has a def inite career choice without having completed much career research. This corresponds with his interview data where he stated that he had a varied professional history and additionally had changed majors from the COT was low suggesting his career maturity is lower than others. Grace Grace was a 22 year old unemployed female high school graduate with a goal of becoming a teacher one day. Her score pattern shows she performed well in three areas and average on the fourth. Grace was high on the CP scale meaning she had awareness, concern, and involvement in making educational and occupational choices. Her CE scale was equally high denoting effective strategies for seeking information and gathering relevant data abo ut occupations. Grace scored well on a third scale, WW, meaning she engaged in appropriate amounts of information seeking to learn about educational and occupationa l opportunities On the DM scale, Grace scored in the average range showing she applie s adequate decision making knowledge/skills to career problems. Like Debbie, Grace performed better on the composite attitude scale (CDA) than the composite knowledge scale (CDK). This suggests she has a good attitude about work but has less knowledge of was high signifying she has an above average degree of career maturity.

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142 Hal Hal was a 21 year old employed male He has a goal of pattern shows he performed well in three areas and below average on the fourth. Hal performed well on the CP scale meaning he had appropriate awareness, concern, and involvement about making his educational and occupational choices. His CE scale was equally high meaning he had effective strategies for seeking career information and gathering relevant data abo ut occupations. Hal scored in the average range on a third scale, WW, meaning he engaged in appropriate amounts of information seeking to learn about educational and occupationa l opportunities On the DM scale, Hal scored in the low range showing he lacks adequate decision making knowledge/skills regarding career problems and this may reflect his work history that is limited to o ne long time position. Hal performed better on the composite attitude scale (CDA) than the composite knowledge scale (CDK) suggesting he has a good attitude about work but s an above average level of career maturity. Ingrid Ingrid was a 21 year old employed female college student with a clearly stated performed well in two areas and poorly in two areas. Ingrid did well on the CP and CE scales, which are attitudinal measures that demonstrate a good attitude towards career planning activities like finding and using career information. She did poorly on DM and WW. These measures assess knowledge a bout the work world. Ingrid performed better on the composite attitude scale (CDA) than the composite knowledge scale

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143 (CDK). This suggests she has a good attitude about work but has less knowledge of s low suggesting her career maturity is lower than others. Jackie Jackie was a 21 year old unemployed female college student without specific career goal. Her scores on all four scales were in the average range. There is a discrepancy between her scores which indicate moderately good career orientation and what she verbalized in the interview. She stated she had no certain career plans and was vacillating between two options nursing and teaching. Despite this uncertainty, her scores in the average rang e may reflect her extensive work history and the fact she has ideas about a career if not a specific choice. Jackie scored in the average range on the COT, meaning that her overall level of career maturity is comparable to her peers. Summary The results o f the CDI demonstrated wide variety among the participants especially on the composite scales. There were no discerni ble performance patterns on the instrument by age, gender, or disease severity One notable pattern emerged from comparison of the attit udinal composite scale (CDA) to the knowledge composite scale (CDK) with five participants performing much better on the attitude scale than the knowledge scale. This suggests they had good attitudes about working but lacked knowledge of the work world. This w arrants further investigation. Additionally, discrepancies arose between the interviews and CDI results. For example, Bob, Debbie, Fred, and Ingrid scored in the low range on the COT an overall measure of career development however they verbalized f irm career aspirations and knowledge of the workplace. Their low scores contradict their reports of career choice

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144 certainty and belie their career maturity. Ann, who also expressed career certainty and workplace knowledge, attained an average score. Con versely, Jackie attained an above average COT score however, she reported uncertainty about her career plans. Hence it would be useful for future qualitative research to review CDI results with participants. This would identify if scores were consistent and if they agreed with said results. These considerations were beyond the scope of the current study.

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145 CHAPTER 7 CONCLUSIONS Overview This chapter is arranged in four sections that summarize the study findings, study limitations, implications for service providers, and recommendations for future research. The first section offers an overview of significant findings from the qualitative interviews and the instrument. The second section describes the limitations of the study. The third section reviews the implications of the research for CF treatment centers, rehabilitation professionals, and educators. The fourth section discusses recommendations for further research. Summary of Findings The purpose of this research study was to examine the personal meaning and experience of employment for people with CF and ultimately develop a substantive grounded theory of career development applicable to individuals with this disease. The study utilized the grounded theory method of qualitative inquiry to investigate the employment implications of CF. Specifically, the researcher performed semi structured qualitative interviews with ten participants to explore the meaning of work and career development processes. The participant s provided rich descriptions of their experiences with employment and career choices in light of CF. Analysis of the interview transcripts followed the constant comparative approach to coding, which identified core themes and sub themes. A theory grounde d in the data, embodied by an ecologically based conceptual model, emerged from these themes. The model reflects the effects of interactions between the person and environment on work experiences and career development.

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146 The researcher administered the Car eer Development Inventory as a secondary source of information rather than for statistical purposes. This instrument was used to supplement interview data and enhance understanding of the maturity. Findings Regarding the Meaning of Wo rk Numerous studies with varied populations have reported that w ork is central to individuals with disabilities (Dutta et al. 2008; Freedman and Fesko, 1996; Moore, Konrad, Yang, Ng, & Doherty, 2011 ) and contributes to life satisfaction (Judge & Watanabe, 1993) These assertions were also substantiated in the current study of employment in individuals with CF. In fact, the study confirmed many positive effects of work in their lives. England (1991) characterized the me (p. 111) In the present study, work had different meanings for participants but with commonalities among them. For instan ce, participants identified beneficial themes pertaining to the meaning of work having a purpose, work being therapeutic, and economic independence. These themes are similar to previous investigations of the meaning of work to people with disabi lities described in Chapter 2. Super (1982) esteem, identity, and (p. 95) and these constructs were echoed by participan ts. For example, in the subset of participants with worse disease, they all expressed a desire to work or return to work propelled by esteem needs and despite illness complications. This demonstrates persistence and reaffirms the notion that work has the rapeutic value for individuals aside from the economic considerations. Notably, employment had great

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147 salience for this set of participants. Work salience refers to relative importance of work and satisfaction with the work role (N aidoo, Bowman, & Gerstein, 1998) High work salience is associated with career maturity, career commitment, and work ethic that in turn contribute to favorable career outcomes Findings Regarding the Career Development Inventory The results of the CD I revealed a range of career competencies among the participants, especially on the COT composite scale, where scores varied from very low to high career maturity. This has important implications for career outcomes particularly for those with middle and low scores. Studies by Creed, Patton, and Hood (2010) and Wessel, Christian, and Hoff (2003) reported that higher levels of career development are associated well defined career objec tives, persistance in post secondary education, obtaining career related work experience, and finding employment in a desired field. One notable pattern emerged from comparison of the attitudinal composite scale (CDA) to the knowledge composite scale (CDK) with five participants performing much better on the attitude scale than the knowledge scale. This suggests they had good attitudes about working but lacked knowledge of the work world. This warrants further investigation because CF may interfere with s chool attendance, after school jobs, summer jobs, and other activities where one would acquire knowledge of the world of work. There were no discerni ble performance patterns on the instrument by age, gender, or disease severity. Nevill and Super (1988) reported similar findings in a study of career maturity in university students using the CDI. These researchers reported gender was not associated with career maturity but commitment to work was related to attitudinal and cognitive factors (Nevill & Super, 1988)

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148 It would be useful for future qualitative research projects using the CDI to review the results with participants. This would identify if scores were consistent with ectations and if they agreed with said results. These considerations were beyond the scope of the current study. Findings Regarding Career Development CF has the potential to influence career development outcomes as evidenced by the interrupted and uninte rrupted patterns observed in the present study. Specifically, older participants reported having more severe disease and some disruptions in education and work pursuits. Furthermore, the majority of participants reported balancing daily treatment demands with school and/or employment was one of their primary challenges. These findings were not surprising given the progressive course of CF and are consistent with previous research (Gillen et al. 1995) However, participants with severe disease continued to work or desired to work in spite of their complications and numerous studies (Burker et al., 2004; Frangolias et al., 2003; Hogg et al., 2007) have maintained that poor lung function alone is not a marker of work disability. The majority of participant s had positive coping behaviors and favorable perception of illness, which is associated with increased likelihood of academic persistence and maintaining employment. This finding corresponds with reports on the association between positive coping and emp loyment outcomes in people with disabilities (Crisp, 2005; Cunningham, Wolbert, & Brockmeier, 2000) Specific to CF is wherein the majority of individuals utilized the coping style optimistic a cceptance, which was significantly associated with superior quality of life variables such as employment This suggests

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149 that psychological processes mediate career outcomes conceptual model (1997) of coping with career barriers London (1997) posits that emotional and cognitive processes for example accurate appraisal, resilience, and constructive coping affect how individua ls respond to career barriers. The precise manner by which perception of illness influences career develo pment in individuals with CF is not readily discernible in the current study and no research in this area exists of life and Bucks et al. (2009) study of treatment adherence are th e only illness perception reports available specific to CF. Future research studies might investigate how the construct of perception of illness is associated with academic achievement, career development, and employment outcomes. Finally, the researcher classified participants by RIASEC career categories (Realistic, Investigative, Artistic, Social, Enterprising, or Conventional; Holland, 1997 ) based on the career aspirations they reported. Of this sample, the majority were pursuing careers in the Social domain and notably, in helping related professions suggesting the influence of health care providers as role models. There is abundant research on career development in childhood (Hartung, Porfeli, & Vondracek, 2005; Watson & McMahon, 2005) that supports the assertion that early career exposure is an (2005) reviewed vocational development literature to explore lifespan vocational development and concluded arn about work and occupations has a profound effect on the choices they make as adolescents and young adults, and ultimately, on their occupational careers (2005, p. 412)

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150 Grounded Theory of Career Development in CF The grounded theory resulting from this study is novel for two reasons. First, there is scant qualitative research on employment in CF and none utilizing the grounded theory method. Second, an ecological approach to the study of employment in CF has never been proposed. Ecological models of career development have been proposed for disability related populations such as developmental disabilities (Szymanski, 1996), HIV/AIDS (Conyers, 2004), and psychiatric illness (Tschopp, 2001) and minority groups (King and Madsen, 2007; Turner, 2006) b ut never applied to CF. A theory grounded in the data related to career development in CF was developed from the analysis and interpretation of the interviews. The theory highlights the complicated interaction of numerous ecological variables (individual characteristics, personal contextual factors, mediating factors, and the environment) that collectively influence career development. The presence of CF alone does not guarantee individuals will experience negative effects on career development. Rather, multiple variables exist that could influence career development An interactional ecological process that began the same way for all the participants but proceeded along divergent paths illustrates the grounded theory of career development in CF that eme rged from this study The grounded theory proposes that work experiences and career development in individuals with CF are influenced by ecologically based interactions. Specifically, career development patterns will vary based on physical and psychologic al characteristics of the person interacting with personal context and the environment. The physical attributes of age, gender, and disease severity along with personal context accounted for some of the variation in the observed career development pattern s by

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151 their effect on stamina and endurance. However, influential psychological variables (altruism, persistence, coping strategies, meaning of work) and aspects of the work environment (employer support, disease disclosure) mediated their effec ts. Labord e Casterot et al. (2011) investigated employment status and work disability in adults with CF. Unlike the present study t he researchers noted that employment status was significantly associated with pulmonary function and education level and was unaffect ed by age and gender. Furthermore, Laborde Casterot et al. (2011) propose the key to employment is achieving the highest level of education possible because this enhances employability The result of these complex interactions is a career development outc ome where one of two possible patterns may occur the uninterrupted pattern or the interrupted p attern. The former marked by continuous school attendance, after school and/or summer employment, high school graduation, enrollment in post secondary educati on, or entering the labor force. The latter by interruptions and disruptions in school and work and an uneven transition path from school to post secondary education or work. Limitations of this Study In qualitative research, the researcher is the primary investigative tool (Richards & Morse, 2007) Thus, trustworthiness is cited as a limitation in qualitative research in (Patton, 2002). As discussed in Chapter 3, the rese archer undertook strategies to minimize bias and maintain the trustworthiness of the study. The initial s tep was to consider reflexivity. This involved reflecting on the role and the method by which decisions about the data are made This process of self reflection resulted in the personal bias statement in Chapter 3 and ongoing awareness of personal bias. Aside

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152 from ongoing reflexivity, additional measures undertaken by the researcher aimed at promoting trustworthiness included : Extensive course work in qualitative research methods. Extensive personal reading of qualitative research literature. Attendance and participation in a bi monthly qualitative data analysis group. Professional training in the use of NVivo qualitative softwa re offered by the College of Education. Private tutoring in the use of NVivo with a professor who is a qualitative expert. Development of an interview guide with assistance from faculty skilled in qualitative research and feedback from the qualitative data analysis group. Consulting with the qualitative data analysis group on emerging themes and the conceptual model. Consulting with committee chair on themes observed in the data. Consulting with a College of Medicine faculty member who is knowledgeable abou t CF on themes observed in the data. Other limitations of the study were the small sample size and lack of ethnic diversity. The small sample limits the transferability of the research findings to the population of individuals with CF. Additionally, all the participants were Caucasian. According to the CF Foundation, the population of people with CF is predominantly white, however the foundation also notes that of people with the disease, about 4% are African American and 7% are Hispanic (Cystic Fibrosis Foundation, 2011) The lack of ethnic diversity suggests that the data collected may not represent the experience of non white individuals with CF. Additional studies with more diverse samples are necessary to understand how CF may affect the employment experiences and career development of people from other ethnic groups. o existing employment research i n CF has included a diverse ethnic sample however;

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153 Quittner et al. (2010) studied the effe cts of socioeconomic status (SES) and race on health related quality of life in a large sample of minorities with CF The researchers found that low SES and minority status contributed to variability in the course of the disease and worse patient reported outcomes (Quittner et al., 2010) Implications for Service Providers The CF Foundation recommends treatment centers assist individuals with career planning (Yankaskas et al., 2004) By assuming an ecological viewpoint, CF treatment centers benefit patients by recognizing the meaning of work and importance of career development. Further, by understanding the complex interplay of individual characteristics, personal context, and environmental factors, CF centers can assist individuals with career dec isions and making a smooth transition from school to post secondary education and/or work. Similarly, rehabilitation professionals can utilize the findings of this study to assist their clients with CF to choose, acquire, and maintain employment. Mungle, Burker, and Yankaskas (2002) reported that adolescents with CF would benefit from career planning and employment services yet this population has been largely overlooked possibly due to misconceptions about limited life expectancy. The fundamental signifi cance of this study is that young adults with CF can and want to work but they need assistance from rehabilitation professionals to navigate contextual and environmental variables. For instance, rehabilitation counselors might assist with identifying suit able employment (for example, free of airway irritants or risk of infection) and in obtaining, needed workplace accommodations. Finally, education professionals may utilize the findings of this study to assist students with CF. Five participants with more severe disease reported experiencing

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15 4 educational disruptions due to CF. However, even students with less severe disease will miss some school for medical appointments or illness. As noted in Chapter 5, educational attainment is associated with employmen t outcomes. School personnel attuned to the complexities of CF could offer interventions to minimize the negative effects of school absences, such as, plans to make up schoolwork, before or after school tutoring, hospital and home education services, and individualized education plans. Early attention to the needs of students with CF may avert later disrupted career patterns observed in this study. Recommendations for Future Research Results of the present study were concluded from a small, non diverse sa mple of individuals with CF. While a rich understanding of the meaning of work and career development was achieved, it was limited by having the perspective of a small number of individuals and thus is not representative of the general population with CF. Thus, f uture studies with large, diverse samples are warranted. More importantly, to continue the development of the proposed grounded theory, follow up studies must test the ecological conceptual model that emerged with a larger sample of individuals wi th CF and with significant others. Just one perspective was obtained for this stud y, that of individuals with CF, h owever, as the ecologically based model suggests, interactions between multiple domains influence employment and career development. Thus, the grounded theory proposed herein would be enhanced by further research obtaining the input of parents, teachers, role models, coworkers, and others involved with the individual. Another component of future research could involve a longitudinal design wi th repeated follow up at regular intervals. The present study was limited to one time

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155 interviews about work experience and career development. A longitudinal design would allow for observation of the career development process as it unfolds measured by r epeated administration of the CDI. Longitudinal studies measuring various aspects of career development in non disabled high school age students are numerous ( Germeijs & Verschueren, 2006 ; Stringer, Kerpelman, & Skorikov, 2011 ; Tracey, Robbins, & Hofsess, 2005 ) but are nonexistent for students with disabilities including CF Finally, the current study did not review CDI results with participants. Future studies that administer the instrument to individuals with CF should incorporate a feedback/interview s ession. A review of CDI results with participants could assess if Furthermore, a large national study incorporating the CDI might compare sample norms to the group no A single sample t t est was performed to compare the mean of the sample to normative group data published in the test manual wer e observed. Conclusion The present study was conducted to gain a rich understanding about the personal meaning of work employment experiences and c areer development process of people with CF. Data were collected by semi structured qualitative interviews with ten participants and the use of a career development instrument. A theory grounded in the data, embodied by an ecologically based conceptual model, emerged from these interviews. The model reflects the effects of interactions between the person and findings suggest that age, gender, and disease severity are physical attributes that

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156 acco unted for some of the variation in the observed career development patterns by their effect on stamina and endurance. However, their effects were mediated by influential intrinsic psychological variables (altruism, persistence, coping strategies) and moti vational variables (meaning of work). These mediators were especially evidenced in participants with more severe disease who were working or in school or both despite advanced disease.

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157 APPENDIX A INTERVIEW GUIDE Interview Guide: The Personal Meaning and E xperience of Work to People with Cystic Fibrosis: A Pilot Study Questions : Tell me what it is like to have CF. o Probe if necessary: How has it changed over time? o Probe if necessary: How did you learn you had CF? o Probe if necessary: Tell me about your daily routines Anything else you would like to tell me about CF? Tell me what school was like for you. o Probe if necessary: Discuss how CF influenced your education. Tell me about your parents or guardians work history. How did their work history influence you? o Probe if necessary: What were their expectations for you? Tell me about the jobs you have held. o Probe if necessary: Tell me about interviewing for positions. o Probe if necessary: Tell me about disclosing CF to employers o Probe if necessary: How has CF affe cted your ability to be hired by an employer? o Probe if necessary: What does work mean in your life? o Probe if necessary: What does work do for you? o Probe if necessary: What is it about work that is important to you? o Probe if necessary: What abo ut working is hard?

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158 o Probe if necessary: What about working is easy? How does CF affect you at work? Tell me about your career plans. o Probe if necessary: What is it about (blank career) that interests you? o Probe if necessary: How did you arrive at this career choice? o P robe if necessary: Discuss how CF influenced your career goals. Anything else you would like to tell me about your work experiences or your career plans?

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159 APPENDIX B INFORMED CONSENT FOR M I NFORMED C ONSENT F ORM to Participate in Research, and A UTHORIZATION to Collect, Use, and Disclose Protected Health Information (PHI) I NTRODUCTION Name of person seeking your consent: Place of employment & position: Please read this form which describes the study in some detail. A member of the research team will describe this study to you and answer all of your questions. Your participation is entirely voluntary. If you choose to participate you can change your min d at any time and withdraw from the study. You will not be penalized in any way or lose any benefits to which you would otherwise be entitled if you choose not to participate in this study or to withdraw. If you have questions about your rights as a rese arch subject, please call the University of Florida Institutional Review Board (IRB) office at (352) 273 9600. G ENERAL I NFORMATION ABOUT THI S S TUDY 1. Name of Participant ("Study Subject") ___________________________________________________________________ 2. What is the Title of this research study? The Personal Meaning and Experience of Work to People with Cystic Fibrosis: A Pilot Study

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160 3. Who do you call if you have questions about th is research study? Principal Investigator: Pablo S. Saldana at 904 652 9622. 4. Who is paying for this research study? The sponsor of this study is the College of Public Health and Health Professions, Department of Behavioral Science and Community Health. 5. Why is this research study being done? I want to learn about your work experiences and what work means to people with cystic fibrosis. You are being asked to be in this research study because you have cystic fibrosis and work experience. W HAT C AN YOU E XPECT IF YOU P ARTICIPATE IN THIS S TUDY ? 6. What will be done as part of your normal clinical care (even if you did not participate in this research study)? There will be no change to your usual medical care provided by the Cystic Fibrosis Center if you decide to participate in the study or decide to stop being in the study. 7. What will be done only because y ou are in this research study? You will be asked to complete a career development survey and be interviewed about what work means to you and your experiences with employment. You can choose not to answer any question for any reason at any time during the interview. The interview will be audio recorded and transcribed verbatim. If you give me permission I may contact you after the interview in order to clarify, expand, and/or validate findings. If you have any questions now or at any time during the study, please contact Pablo S. Saldana in question 3 of this form. 8. How long will you be in this research study? Approximately one to two hours for the length of time it takes to complete the in depth interview. A brief follow up interview may be conducted by telephone or in person a s appropriate to clarify, expand, and/or validate findings.

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161 9. How many people are expected to take part in this research study? Fifteen people. W HAT ARE THE R ISKS AND B ENEFITS OF THIS S TUDY AND W HAT ARE Y OUR O PTIONS ? 10. What are the possible discomfor ts and risks from taking part in this research study? Researchers will take appropriate steps to protect any information they collect about you. However, there is a slight risk that information about you could be revealed inappropriately or accidentally Depending on the nature of the information, such a release could upset or embarrass you, or possibly affect your insurability or employability. Questions 17 21 in this form discuss what information about you will be collected, used, protected, and shar ed. This study may include risks that are unknown at this time. Participation in more than one research study or project may further increase the risks to you. If you are already enrolled in another research study, please inform Pablo S. Saldana (listed in question 3 of this consent form) or the person reviewing this consent with you before enrolling in this or any other research study or project. Throughout the study, the researcher will notify you of new information that may become available and might affect your decision to remain in the study. If you wish to discuss the information above or any discomforts you may experience, please ask questio ns now or call the PI or contact person listed in question 3 in this form. 11a. What are the potential benefits to you for taking part in this research study? There are no anticipated potential benefits of being in this study. 11b. How could others possibly benefit from this study? The information that the researcher acquires from this study may benefit other cystic fibrosis patients in the future. 11c. How could the researchers benefit from this study? In general, presenting research results helps the career of a scientist. Therefore, Pablo S. Saldana may benefit if the results of this study are presented at scientific meetings or in scientific journals.

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162 12. What other choices do you have if you do not want to be in this study? You can refuse to p articipate in this study. This will not affect your care at the Cystic Fibrosis Center. Participation in this study is voluntary and your usual medical care will continue regardless of whether or not you choose to participate. 13a. Can you withdraw from this study? You are free to withdraw your consent and to stop participating in this study at any time. If you do withdraw your consent, you will not be penalized in any way and you will not lose any benefits to which you are entitled. If you decide to wi thdraw your consent to participate in this study for any reason, please contact Pablo Saldana at 904 652 9622 He will tell you how to stop your participation safely. If you have any questions regarding your rights as a research subject, please call the I nstitutional Review Board (IRB) office at (352) 273 9600. 13b. If you withdraw, can information about you still be used and/or collected? No. 13c. Can the Principal Investigator withdraw you from this study? You may be withdrawn from the study without you r consent for the following reasons: Administrative reasons. W HAT ARE THE F INANCIAL I SSUES IF Y OU P ARTICIPATE ? 14. If you choose to take part in this research study, will it cost you anything? There will be no costs to you for participating in the study. 15. Will you be paid for taking part in this study? You will be provided a $50.00 Wal Mart gift card for participating in the study. 16. What if you are injured because of the study? Please contact the Principal Investigator listed in question 3 of this form if you experience an injury or have questions about any discomforts that you experience while participating in this study.

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163 17. How will your health information be collected, used and shared? If you agree to participate in this study, the Princ ipal Investigator will create, collect, and use private information about you and your health. This information is called protected health information or PHI. In order to do this, the Principal Investigator needs your authorization The following section d escribes what PHI will be collected, used and shared, how it will be collected, used, and shared, who will collect, use or share it, who will have access to it, how it will be secured, and what your rights are to revoke this authorization. Your protected health information may be collected, used, and shared with others to determine if you can participate in the study, and then as part of your participation in the study. This information can be gathered from you or your past, current or future health recor ds, from procedures such as physical examinations, x rays, blood or urine tests or from other procedures or tests. This information will be created by receiving study treatments or participating in study procedures, or from your study visits and telephone calls. More specifically, the following information may be collected, used, and shared with others: your diagnosis of cystic fibrosis to determine eligibility for the study and descriptive data will be collected such as age, gender, race, education level and employment status. This information will be stored in locked filing cabinets or on computer servers with secure passwords, or encrypted electronic storage devices. Some of the information collected could be included in a "limited data set" to be use d for other research purposes. If so, the limited data set will only include information that does not directly identify you. For example, the limited data set cannot include your name, address, telephone number, social security number, photographs, or o ther codes that link you to the information in the limited data set. If limited data sets are created and used, agreements between the parties creating and receiving the limited data set are required in order to protect your identity and confidentiality a nd privacy. 18. For what study related purposes will your protected health information be collected, used, and shared with others? Your PHI may be collected, used, and shared with others to make sure you can participate in the research, through your participation in the research, and to evaluate the results of the research study. More specifically, your PHI may be collected, used, and shared with others for the following study related purpose(s): To determine your eligibility to be in the study and t o be able to contact you regarding the study. Once this information is collected, it becomes part of the research record for this study.

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164 19. Who will be allowed to collect, use, and share your protected health information? Only certain people have the l egal right to collect, use and share your research records, and they will protect the privacy and security of these records to the extent the law allows. These people include: the study Principal Investigator, Pablo S. Saldana and research staff associated with this project. other professionals at the University of Florida or Shands Hospital that provide study related treatment or procedures. the University of Florida Institutional Review Board (IRB; an IRB is a group of people who are responsible for looki ng after the rights and welfare of people taking part in research). 20. Once collected or used, who may your protected health information be shared with? Your PHI may be shared with: the study sponsor ( the College of Public Health and Health Professions, Department of Behavioral Science and Community Health ). United States and foreign governmental agencies who are responsible for overseeing research, such as the Food and Drug Administration, the Department of Health and Human Services, and the Office of H uman Research Protections Government agencies who are responsible for overseeing public health concerns such as the Centers for Disease Control and federal, state and local health departments. Otherwise, your research records will not be released without your permission unless required by law or a court order. It is possible that once this information is shared with authorized persons, it could be shared by the persons or agencies who receive it and it would no longer be protected by the federal medical p rivacy law. 21. If you agree to take part in this research study, how long will your protected health information be used and shared with others? Your PHI will be used and shared with others three years from the time you enter the study. You are not r equired to sign this consent and authorization or allow researchers to collect, use and share your PHI. Your refusal to sign will not affect your treatment, payment, enrollment, or eligibility for any benefits outside this research study. However, you cann ot participate in this research unless you allow the collection, use and sharing of your protected health information by signing this consent and authorization.

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165 You have the right to review and copy your protected health information. However, we can make this available only after the study is finished. You can revoke your authorization at any time before, during, or after your participation in this study. If you revoke it, no new information will be collected about you. However, information that was already collected may still be used and shared with others if the researchers have relied on it to complete the research. You can revoke your authorization by giving a written request with your signature on it to the Principal Investigator. S IGNATURES A the purpose, the procedures, the possible benefits, and the risks of this research study; health information will be collected, used, and shared with others: Signature of Person Obtaining Consent and Authorization Date risks; the alternatives to being in the study; and how your protected health information will be collected, used and shared with others. You have received a copy of this Form. You have been given the opportunity to ask questions before you sign, and you have been told that you can ask questions at any time. You voluntarily agree to participate in this study. You hereby authorize the collection, use and sharing of your protected health information as described in sections 17 21 above. By signing this form, you are not waiving any of your legal rights. Signature of Person Consenting and Authorizing Date A UDIO T APE A DDENDUM TO C ONSENT F ORM You have already agreed to participate in a research study entitled: The Personal Meaning and Experience of Work to People with Cystic Fibrosis: A Pilot Study conducted by Pablo Saldana I am asking for your permission to allow me to audio tape

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166 the interv iew as part of the study. The recording(s) will be used for analysis by the researcher. The recording(s) will include your first name only. The recording(s) will be stored in a locked file cabinet and linked with a code to and will be destroyed upon completion of the study procedures. Your signature on this form grants the investigator named above permission to audio record you as described above during your participation in the study. The investigator will not use the recording(s ) for any other reason than stated in the consent form wi thout your written permission. S IGNATURES the purpose, the procedures, the possible benefits, and the risks of this research study; d health information will be collected, used, and shared with others: Signature of Person Obtaining Consent and Authorization Date the alternatives to being in the study; and how my protected health information will be collected, used and shared with others. I have received a copy of this Form. I have been given the opportunity to ask questions before signing, and I have been told that I ca n ask questions at any time. I voluntarily agree to participate in this study. I authorize the collection, use and sharing of my protected health information as described above. By signing this form, I am not waiving any of my legal rights. Signature of Person Consenting and Authorizing Date

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167 APPENDIX C DEMOGRAPHIC INFORMAT ION SHEET Demographic Information Thank you for providing the information below. It allows the researcher to describe participants and make comparisons to other groups. Age : ________ Gender : _____ Male _____ Female Race : _____ American Indian or Alaska Native _____ Asian _____ Black or African American _____ Native Hawaiian or Other Pacific Islander _____ White _____ Other, Plea se specify:_______________________________________________ Highest Education level : _____ Middle or High school attendance _____ High school diploma/GED _____ Some college _____ Associates degree _____ degree _____ Some graduate school _____ degree _____ Specialists degree _____ Doctoral degree _____ Post graduate Currently employed? _____ Yes _____ No If yes: _____ Full time _____ Part time If no: How long ago were you last employed? _________________________ _____ Full time _____ Part time

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190 BIOGRAPHICAL SKETCH Pablo Saldana, CRC, LCSW is a doctoral candidate in the Rehabilitation Science Doctoral P rogram at the University of Florida College of Public Health and Health Professions. Mr. Saldan a received in c ounseling from the William Paterson University of New Jersey in 1994 in social w ork from Rutgers University in 1999 and in rehabilitation c ounseling from the University of North Florida in 2005 He egree in social science from the William Paterson University of New Jersey in 1990. Accomplishments during Mr. Saldana student career include being a recipient of a four year alumni fellowship, which allowed him to conduct his dissertation stud ies Additionally, during his doctoral training, Mr. Saldana was selected to present at two national conferences (NCRE and CFF) and at University of While completing the requirements for his doctoral degree, Mr. S aldana worked as a research assistant for Dr Jamie Pomeranz in the Department of Behavioral Science and Community Health at the University of Florida. Mr. Saldana is a Licensed Clinical Social Worker and a Certified Rehabilitation Counselor. Throughout h is doctoral studies, Mr. Saldana has been the social worker for joining Nemours he worked for the Florida Department of Children and Families for four years providing social work technical assistance to contracted providers of mental health and substance abuse services.