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LEISURE IN THE LIVES OF OLDER MEN: COPING AND ADAPTATION
FOLLOWING PROSTATE CANCER DIAGNOSIS AND TREATMENT
DAVID KINGDON HOWARD
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
David Kingdon Howard
This dissertation is dedicated to my cousin Angelique "Angel" Adrienne Gunnell Tilby
[1964-1998], and the many people who, like her (whether in the past, present, or future),
encounter and face cancer and the challenges it presents to mind, body, and soul. And
despite those challenges, or perhaps because of them, choose to continue to live with
dignity, purpose, and tremendous courage.
I would like to thank several individuals who have supported me during the
completion of my Doctorate degree and this dissertation study. Most importantly, I
extend sincere appreciation to my wife and children, for their support and patience
throughout this process. I also thank my parents for their constant interest and support of
my activities throughout the years.
I thank Dr. Candy Ashton-Schaeffer for being the type of person that drew me to
the University of Florida in the first place, and was a large influence in my first two years
within the Department of Recreation, Parks, and Tourism. And I thank Dr. Heather
Gibson and her successful efforts to instill in me an appreciation and passion for
scholarship in the area of leisure studies. It was her graduate seminar, Foundations of
Leisure Behavior, within a course project through which the seeds were planted that
eventually led to the design and implementation of what became my dissertation
I express my appreciation and respect for the faculty and staff of the College of
Health Professions, and the leadership and structure of the Rehabilitation Science Ph.D.
program, where I spent the last year of my doctoral work. I wish to express my gratitude
to my supervisor, Dr. Elizabeth Swett from the Department of Rehabilitation Counseling,
for her patience and encouragement throughout the ups and downs of dissertation work. I
also want to thank and express my respect for the members of my advisory committee.
From the College of Health Professions, Drs. Robert Glueckauf (Clinical and Health
Psychology) and Mary Ellen Young (Rehabilitation Counseling) were instrumental,
particularly Dr. Young and her expertise in the area of qualitative methodology.
I appreciate Dr. William Marsiglio from the College of Liberal Arts and Sciences,
Department of Sociology, who was with me the entire way, and provided invaluable
guidance regarding qualitative research and scholarship regarding men and masculinity. I
also express gratitude to Dr. Bryan Weber from the College of Nursing and his guidance
particularly in regard to older men, prostate cancer, and psychosocial issues relevant to
planning effective ways to make a difference in men's lives. Assisting Dr. Weber in his
own research within this area proved to be immensely valuable. I am also grateful to Dr.
Carmen Russoniello in the Department of Recreation and Leisure at East Carolina
University (ex-officio committee member) for his oversight and recommendations
pertaining to leisure within this study.
Finally, I would like to thank the men who volunteered to participate in my study.
Almost without exception, these men stated their interest in sharing of themselves so that
others might be helped because of it.
TABLE OF CONTENTS
A C K N O W L E D G M E N T S ................................................................................................. iv
L IST O F TA B LE S .......... ... .. ..... ....... .... .......... ........ ........ .. .............
LIST OF FIGURES ......... ......................... ...... ........ ............ xi
ABSTRACT ........ .............. ............. .. ...... .......... .......... xii
1 STATEMENT OF THE PROBLEM...............................................1
2 REVIEW OF RELATED LITERATURE.......................... ............... ............7
M en and T heories of A going ............................................................... .....................7
Leisure and its Role in Older Men's Lives............................................... 10
The M meaning of L eisure....................................................................................... ...13
Prostate Cancer Etiology and its Threat to Health....................................................15
Risk Factors and Cancer Screening.................................... ..................... 15
Treatment for Prostate Cancer and Potential Side Effects .................................17
Psychosocial Adaptation, Coping, and Health ................................. ............... 18
World Health Organization and the ICF Model ...............................................24
C o p in g an d L eisu re ...................................... ............................ .................... 2 6
R research Q u estion s........... .................................................................. ........ .. .... .. 30
3 M E T H O D O L O G Y ............................................................................ ................... 32
O overview .......................................................................................................... 32
R research D esign ....................... ............................................................................ 32
The Grounded Theory A pproach..................................... ......... ............... 33
Researcher as Instrum ent...................... ...... ............................. 35
Sensitizing C oncepts ..................... .. .... ................... .... .. ........... 36
D developing Grounded Theory ..................................... ......... ........ ....... 38
C constant C om prison ................................................ .............................. 39
P eer D briefing ............................ ....................................... ....... ...... ..40
Selection of P participants .............. ............. ... .................................. .................... .... 40
Purposeful and Theoretical Sampling ...................................... ............... 41
Ethical Considerations.......................................................... 42
Inform ed C consent ......... ..... ..................... ......... ........ ........ .... 42
Potential Risks and Benefits................................................... .. .................43
C confidentiality ......... ..... .... ............... ...................... ........ .... 43
T h e S ettin g ..................................................................................................... 4 3
Pilot Study ......................................... .......... 44
Interview Process and D ata Collection.................................... ....................... 45
The Participants ................................... ..... .. ...... ............. .. 49
Analysis of the Data ......... .. ................................ .. .. ...... .. ............ 53
Standards for the Quality of Conclusions..................... ...............56
M ethodological V ariability .............................................................. .....................59
Summary ............... ..................................................62
4 INTRODUCTION TO FINDINGS ........................................ ........................ 63
Identification of the Central Category .................................. ............ .................. 66
Outline of the Report of Findings ............... .....................................68
5 OLDER MEN'S LIVES AND THE MANY FACES OF LEISURE.......................71
D efining Q u ality of L ife .................................................................. .....................7 1
Fulfillm ent of M asculine R oles .................................. ...................................... 71
Personal Values and Characteristics.................... ..... ......................... 73
Relationships with Spouse and Family..................................... ............... 76
A appreciation of H health .......................................................... ............... 77
Productivity and Involvem ent in Activity ................................. ............... 79
Other Parameters of Quality of Life ............... ............................................ 81
The retirem ent transition ........................................ ......................... 81
N options of m asculinity ................................... ........................................... 84
Masculinity and attitudes regarding sexuality............................................88
Generativity: Interacting with posterity ....................................... .......... 93
Older Men's Lives Discussion about Quality of Life............................................96
Discussion of Older M en's Life Transitions ................................... .................99
The M any Faces of Leisure ....................................................................... 103
T im e ............................................................................................................. 1 0 3
A activity ............................................................................... .. .......... .................. 104
Participation and Involvement in Life Events............................106
R elation sh ip s ...............................................................10 9
A antithesis of W ork ........ ........................................ .................. ........... .. 10
Other Factors Pertaining to Leisure........... .............................. ...... ............. 111
Motivation and meaning of leisure.......................... .....................11
C onstraining variables......... ................................................. ............... 118
Older Men's Lives Discussion about Leisure Attitudes and Behavior.................. 123
6 MEN'S EXPERIENCE WITH PROSTATE CANCER...................................130
Reacting to the Diagnosis of Cancer .............. .... .......................................... 130
Shock and D enial ................................................ .. ...... .. ............ 131
Anxiety and Depressive Symptoms ............ ............................................. 132
Calm and A acceptance ......................................................... ............... 133
Spousal R action to D iagnosis ................................. ...................................... 135
Discussion about Men's Experience with Prostate Cancer .................................... 135
Selecting Treatm ent .................. ..................................... .. .......... .... 137
D discussion about R ole of Spouse ........................................... ....... ............... 146
Discussion of the Process of Selecting Treatment............................... ..................148
Discussion of Different Treatments as a Condition of Men's Experience .............153
Coping w ith Physical Side Effects ........................................ ........ ............... 154
H ot Flashes .......................................... ................... .... ........ 154
B reast G row th/Tenderness ........................................ .......................... 155
B ow el D iffi cu lty ................................................................... ..................... 15 5
F a tig u e ..................................................................................................... 1 5 6
Dry M south ................................................................... .... ........ 156
Pain ................................................................ ..... ...... ........ 157
Incontinence ...................................................... 158
Reduction of Penis Size/Ejaculatory Changes ..................................... 160
Im p act o n L ib id o ......................................................................................... 16 0
E rectile D y function ........................................................................ 162
Coping with Psychosocial Side Effects .......................................166
Shock and Denial ..................................... ........ ......... .. ...... 166
Anxiety and Uncertainty ............................................................. ............. 167
A nger and Irritability ....................................169............................
Em barrassm ent and Isolation ....................................................... 170
Threat of Reoccurrence ................................. ........................... ...... 171
Religion and Spirituality........................... ...... ...............173
Discussion of Side Effects as a Category .................................... ......177
D discussion about Physical Side Effects................................ ............... 177
Discussion about Psychosocial Side Effects .................... ............................ 178
The Impact of Prostate Cancer Experience on Leisure Attitudes and Choices ........179
Leisure as a Condition of Coping and Adaptation.............................. 187
7 SUMMARY AND RECOMMENDATIONS ............................ .................... ...197
S u m m a ry ................... .. .. .... .. ...................................................... .. .. 1 9 7
Lim stations .................................................. ......... .. .. ............ 198
Implications for Practice and Research ............................................ .. ......199
Participant's Advice to Other Men......................... ......... 204
C onclu sion ........................................................ ........ .... 206
A FLYER ................... .......................... .................. 208
B INFORM ED CON SENT .......................................................... ............... 209
L IST O F R EFE R EN C E S ................................ ........................... ............... ............... 211
B IO G R A PH IC A L SK E T C H ........................................... ...........................................221
LIST OF TABLES
1 Advantages and Potential Side Effects of Prostate Cancer Treatments ................. 18
2 Frequency Distributions of Selected Demographic Variables ..............................51
LIST OF FIGURES
1 Quality of Life, Leisure, and Coping and Adaptation following Prostate Cancer
T re atm en t ......................................................................... 6 5
2 Shared Properties of Quality of Life and Leisure......................... .................124
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
LEISURE IN THE LIVES OF OLDER MEN: COPING AND ADAPTATION
FOLLOWING PROSTATE CANCER DIAGNOSIS AND TREATMENT
David Kingdon Howard
Chair: Elizabeth Swett
Major Department: Rehabilitation Counseling
On an annual basis, approximately 200,000 men within the United States are
diagnosed with prostate cancer. In a variety of settings, health care professionals are
called upon to assist men and their families who face decisions about prostate cancer
treatment, and then afterward help them to cope with individual side effects. These side
effects may be physical (e.g., incontinence, erectile dysfunction, hot flashes) and/or
psychosocial (e.g., anxiety, embarrassment, self-image, withdrawal). Though literature
exists describing aspects of men coping with physical side effects, less is known about
efforts to adapt to psychosocial side effects. Furthermore, the dynamics associated with
leisure or free time, voluntarily-chosen activity following diagnosis and treatment for
prostate cancer has not been explored. Leisure is recognized as a crucial aspect of quality
of life, especially for older adults.
Utilizing a qualitative research design with grounded theory methodology,
interviews were conducted to explore older men's definitions of quality of life, their
perspective regarding leisure, and how the prostate cancer experience impacted their lives
- in particular, leisure. Perceptions of quality of life included adherence to gendered roles
and personal traits, significant relationships, health, and being active and productive.
Events such as retirement were explored, along with "generativity" which focuses on
older adults' tendency and desire to transmit wisdom and knowledge to future
generations. Leisure was illustrated as a phenomenon that included constructs of time,
activity, participation, relationship contexts, and as an antithesis to work-place attitudes
and behaviors. Motivational factors relative to leisure, meanings derived from leisure
participation, and barriers that impede leisure involvement were identified.
It was found that men diagnosed and treated for prostate cancer were able to cope
and adapt to individual circumstances, and they sought to keep free time, voluntarily-
chosen activities as an important of their lifestyle. Men's participation in leisure,
recreation, sports, and hobbies, often with friends or family members was sometimes
modified or altered due to the presence of treatment side effects. However, despite the
presence of side effects, these activities still provided experiences that were enjoyable,
helped establish and maintain significant relationships, and gave personal meaning to life.
STATEMENT OF THE PROBLEM
The elderly are an increasingly large segment of society within the United States.
In 2000, Americans 65-years-old or older totaled 35 million. This figure represents
12.4% of the population, or about one in every eight Americans. Since 1900, the
percentage of Americans 65 years old or older has more than tripled. The number of older
Americans has increased by 3.7 million, or 12% since 1990. In the year 2000, men
reaching age 65 had an average life expectancy of 16.3 years. As of 2000, 16.4% of
persons 65 years or older were minorities, with approximately half of them (8%) being
African-American. By 2030, it is expected there will be about 70 million older persons,
accounting for 20% of the total population (U.S. Administration on Aging, 1999).
Despite the sheer numbers of older men, which of itself warrants attention,
successful aging is more than becoming a member of a certain age group. Aging and
development throughout the human lifespan has been studied and explored as a
multifaceted phenomenon including, but not limited to, fulfillment of social roles
(Bowling, 1997; Whitbourne, 2001), aspects related to physical and psychological
functioning (i.e., sexuality; (Schiavi, 1999), and meaning (Settersten, 2002)). Typically,
as men grow older, amidst transition from work-place productivity to retirement and into
a more of a leisure-lifestyle, decreases in functional ability occur and, not surprisingly,
the chances of chronic illness or experiencing a disability increase, thus challenging the
quality of life experienced (Seeman & Chen, 2002; Stuck et al., 1999). For example, the
risk of being diagnosed with cancer increases with age. For men over the age of 40,
prostate cancer is the most frequently diagnosed type of solid organ cancer (American
Cancer Society, 2003). For older men in particular, prostate cancer can be a serious threat
to health and one's quality of life (Kelly & Dodd, 2001). More than 70% of all prostate
cancer diagnoses occur in men over the age of 65. The probability of men aged 40 to 59
being diagnosed with prostate cancer is 1 in 45, and for men aged 60 to 79 it is 1 in 7. At
any point in a man's life, from birth to death, the probability is 1 in 6 (American Cancer
Located just below the bladder, the prostate is a walnut-sized gland that surrounds
the urethra the tube through which urine vacates the body. One purpose of the prostate
gland is the production of semen, which aides the motility of sperm cells and protects
them from the acidic environment of a woman's reproductive system. The prostate
produces about 25% of the seminal fluid that combines with sperm during ejaculation.
Alongside the prostate are nerves that facilitate penile erection. Adjacent to the prostate
are sphincters that play an important role in control of urination (Bostwick, MacLennan,
& Larson, 1999).
Carcinoma of the prostate, similar to cancers of other parts of the body, occurs
when cells inside the prostate grow abnormally or out of control. Once detected, various
treatments for prostate cancer are available (e.g., surgery, radiotherapy, hormone
therapy). Each of these treatment alternatives, however, comes with certain risks and
subsequent side effects that may impact quality of life (Kelly & Dodd, 2001).
Similar to other potentially serious illnesses, prostate cancer and treatment can pose
a threat to the health and well-being of a man. It may create uncertainty and anxiety, and
may necessitate adjustment for both the man and his family and friends (Kunkel, Bakker,
Myers, Oyesanmi, & Gomella, 2000). Though there is a great deal of literature
concerning prostate cancer and post-treatment issues related to quality of life, the vast
majority of studies have targeted aspects of physical functioning. Many studies have
focused on incidence and impact of incontinence and erectile dysfunction (e.g., (Litwin et
al., 1999; Pietrow, Parekh, Smith, Shyr, & Cookson, 2001). Less detailed information,
however, is available about the nature and extent of the psychological, emotional, and
social impact of prostate cancer during activities of daily living, including leisure
Common side effects of cancer diagnosis and treatment include depression,
uncertainty, grief, anxiety and stress, fatigue, diminished physical mobility and
functioning, pain management, urinary incontinence, social isolation, diminished sexual
functioning (erectile dysfunction), and added stress in relationships (Fransson, 2000;
Kunkel et al., 2000; McPherson, Swenson, & Kjellberg, 2001). Because these side effects
have not been explored in relation to how they impact leisure and one's chosen leisure
lifestyle, healthcare professionals would benefit from having additional information about
the role leisure plays in psychosocial adaptation and quality of life after prostate cancer.
More knowledgeable professionals would be able to provide a broader range of effective
services that meet the needs of the patient population, and empower men to successfully
overcome challenges and resume important life activities. It is likely, however, that
prostate cancer and its treatment negatively impact leisure attitudes and behaviors of
older men. Despite the significant role that leisure choices and behaviors play in the life
and development of older adults (J. Kelly, 1993; Douglas Kleiber, 1999; McGuire, Boyd,
& Tedrick, 1999), the role of leisure following prostate cancer and treatment, and the
impact of the experience on leisure behavior has not been studied.
Because of the nature of the problem being investigated, qualitative methodology
utilizing a grounded theory approach and sensitizing concepts was conducted (A Strauss
& Corbin, 1998). This inductive strategy requires the researcher to be "close" to
interview data, intensely and constantly reading transcripts until definitive concepts and
theoretical insights emerge. While more specific information about this methodology and
its procedures are found in the third chapter of this document, it is important to disclose
some of the author's background and biases for the sake of the reader who will access the
findings of this study. These factors influenced the way this research was conducted and
the way the data were interpreted. An undergraduate degree was earned by the author in
recreation and leisure studies, with an emphasis in therapeutic recreation. This was
followed by a masters degree in clinical social work. The author's doctoral degree, and
related course work, was completed in a multi-disciplinary rehabilitation science Ph.D.
program, within the College of Public Health and Health Professions at the University of
Florida. As a practitioner, the author has worked in mental health facilities with patients
and clients of all ages, substance abuse treatment and prevention settings with adults and
adolescents, and adult correctional institutions. Work in these settings was primarily as a
certified recreation therapist, but, with a clinical social work background, additional
responsibilities similar to that of a mental health counselor or therapist were often
The decision to conduct dissertation research on the topic of prostate cancer and
leisure's role in psychosocial adaptation stemmed from scholarly interests shaped from
experience in both academic and practice settings. These interests include: (a) to
understand the leisure attitudes and behavior of people with disabilities (or who have
potentially disabling conditions) and how disability impacts leisure, (b) to explore how
the complexities of gender (e.g., attitudes and behaviors) affect the leisure behavior of
people with illnesses or disability, and (c) to determine how illness or disability impacts
issues related to sexuality when considering the dynamics of leisure and gender. The
selection of men with prostate cancer as a study population allowed the exploration of
several facets of these questions, as well as, furthered the scientific knowledge in an area
of research that has been lacking. The following definitions of terms are provided to
assist the reader in recognizing and understanding important concepts underlying the
design and execution of this study.
Cancer Disease characterized by cells that exhibit uncontrolled growth and division
(Bostwick et al., 1999).
Disability Any restriction or lack of ability to perform an activity in the manner or
within the range considered normal for a human being (World Health Organization,
Health The state of complete physical, mental, and social well-being and not merely
the absence of disease or infirmity (World Health Organization, 1948).
Leisure Choices and behaviors within a combination of free time and expectation of
preferred experience (Douglas Kleiber, 1999). Important constructs within leisure include
freedom, lack of obligation (non-work time), the absence of worry, and a sense of
opportunity and creative expression. Recreation and play are terms that embody traits,
both similar and dissimilar as leisure, that include fun, spontaneity, social affiliation or
support, fulfillment, and growth (Godbey, 1999). Leisure may be considered as "the
envelope containing the variety of experiences [and accompanying emotions] that occur
during free time" (Kleiber, 1999, p. 4).
Psychosocial Any and all psychological and social issues related to the individual's
response to physical disease and disability, decreased activity level, behavioral
dysfunction, general health status (Renwick & Friefeld, 1996) and overall quality of life
(Morrow, Chiarello, & Derogatis, 1978).
Quality of Life Individual response to physical, mental, and social effects of illness
that significantly influence the extent to which personal satisfaction with life
circumstances can be achieved (Bowling, 1997).
REVIEW OF RELATED LITERATURE
A wide variety of literature and resources can, and should, be discussed when
examining issues related to men's health, aging, leisure, psychosocial adaptation to
illness or disability, and the potential role leisure plays as it interacts with the experience
of being diagnosed and treated for prostate cancer, and adaptation to inherent side-effects.
The following is a discussion and summary of information taken from the scientific and
academic literature pertinent to the questions being asked in this research study.
Men and Theories of Aging
A central aim for any discussion or study related to older men and how illness
might disrupt their lives, is to first identify important components of normal aging, and
theories that have brought understanding about issues important to men (Applegate,
1997). A theoretical model developed by Erikson (1959) and life stage theories proposed
by Levinson, Darrow, Klein, Levinson, and McKee (1978) provided a foundation from
which subsequent theories of aging emerged.
Erikson (1959) conceptualized human development as eight successive life stages
dependent on the mastery of key developmental tasks and the resolution of associated
psychological crises. Middle adulthood (35 to 55 or 65 years of age), the second to last
developmental stage, consists of resolving crises related to being occupied with creative
and meaningful work, and with issues surrounding the family. Herein, the significant
challenge is generativity versus self-absorption, where generativity means to preserve
one's culture and transmit values through the family, caring for others, and making
contributions to society. Opposite of this is self-absorption, or stagnation, that may result
from fear of inactivity or failure to find a new purpose and satisfactory meaning of life.
Erikson felt that much of life is spent preparing for middle adulthood. The final stage of
late adulthood (55 or 65 until death), according to Erikson, involves a crisis of integrity
versus despair. Integrity is the feeling when an older adult looks back on his life with
happiness and contentment, feeling fulfilled with his contributions, accepting mistakes,
and believing that his life had meaning. Despair, on the other hand, is experienced by
those who are not able to look back and see purpose in their lives (Erikson, 1959).
Levinson et al. (1978), like Erikson, believed men's lives evolve in a more or less
orderly sequence of stable periods or "eras," that are emphasized by "transitional
periods" from one era to the next -- a period that may last several years. According to
Levinson, a man in the era of late adulthood was likely to be consumed by personal and
social response to bodily decline, awareness of one's own mortality punctuated by
medical wake up calls, the serious illness or death of loved ones, increasing movement to
the periphery of professional and social status, and changing life philosophies (Levinson,
Darrow, Klein, Levinson, & McKee, 1978). More recently, other theories emerged to
help further capture and define the process and experience of aging. Many of these
theories (e.g., role theory, activity theory, disengagement theory, and continuity theory),
raise important questions pertaining to men, their health and quality of life, and the nature
and utilization of leisure in their lives.
Role theory is based on the premise that aging brings about the potentially
traumatic decline of familiar roles, particularly those vocational in nature, or exist within
the family system, and roles that are embedded with well-defined behaviors and
expectations. Conflict and challenge occurs when it is perceived that one's role, and the
identity that goes along with it, is diminished or extinguished. Activity theory holds that
decreases in customary levels of activity, each laden with meaning, amounts to a
diminished sense of well-being. Disengagement theory suggests that as age increases,
men naturally become less involved with institutions of society, partially as a result of
deteriorating strength; -- thereby resulting in fewer relationships with others and, again,
personal challenge. Continuity theory allows for role loss, social disengagement, and a
decline in activity participation while asserting that an individual's unique set of
personality and behavioral traits, individual variation notwithstanding, helps the
individual endure the test of time and provide a sense of continuity and predictability
This type of theoretical underpinning provides a lens through which male
experience can be better understood and interpreted, especially when threatened by a
serious illness. In this way, a specific lens may be utilized as the context for male
experience, thus enhancing theoretical sensitivity while allowing for multiple ideas
within that context. It is interesting to note, however, that despite the large number of
older men in American society, issues of elderly men have been notably absent from even
mainstream men's studies (Thompson, 1994). This may be due, in part, to the fact that
fewer men than women reach old age, lessening the priority given to men's issues. It is
also possible that men's issues are obscured by the perception that older men are
perceived as physically impaired, keeping a focus on illness rather than prevention, health
promotion, or quality of life (Applegate, 1997).
Leisure and its Role in Older Men's Lives
Leisure is a component that many consider to be an important contributor to the
quality of life of older men (Freysinger, 1999). Leisure is a complex phenomenon with
dynamics that change based on one's life situation or health status. Regardless of a
person's age, gender, economic situation, social status, or health condition, consistent and
meaningful participation in leisure, recreation, and play provide opportunities for growth
and development in all life domains physical, intellectual, emotional, social, and
spiritual (Godbey, 1999; McGuire et al., 1999). This is also true for individuals who are
experiencing illness or who are facing the prospects of disability (Institute, 1989).
While many use the terms leisure, recreation, and play almost synonymously,
important conceptual distinctions exist. Leisure can be considered simply as one's free-
time when not at work, or while taking a break during the workday. Leisure may also be
viewed as a set of activities or certain behaviors that an individual participates in -- some
of which are done for the sake of diversion, some for relaxation, others for the purpose of
gaining or strengthening interpersonal or familial relationships, and others for the sake of
exercise and physical or emotional health. Other researchers who study leisure, however,
view the topic not in terms of time or place, but as a set of activities. They see leisure,
akin to subjective conceptualization of health, as a state of mind or a spiritual experience
or place where one can escape from the stresses of daily living and contemplate the
meaning of life. Self-awareness and renewed identity are also thought to be outcomes of
many leisure activities, especially those that are internally motivated and based on
perceived freedom (Godbey, 1999; R Mannell, Zuzanek, & Larson, 1988). Recreation, on
the other hand, is more structured, often done with or in the presence of others, and is
likely more physical in nature. Recreational activity often has tangible consequences,
such as winning a game, or achieving a high score. Play generally occurs during activities
which are inherently carefree, spontaneous, or childlike (Ellis, 1973; Godbey, 1999).
It is helpful to realize that the participation in the same activity or experience by
different people can be recreation for one, leisure for another, and play for yet another.
Also, as one ages or the context changes, an activity can, for the same individual, be
perceived as leisure at one point in time, recreation at another, and simply being playful
at yet another (Dattilo, 1991; Goodale & Godbey, 1988). For example, as a teenager, a
boy may learn to golf, and as he plays he simply likes the exercise, the enjoyment, and
the chance to learn new skills. As a young or middle aged adult, golf may be more
recreational as he competes against peers in weekend tournaments, or takes in a round as
a break from his normal workplace routine. Once retired, golf perhaps has a different
meaning one that symbolizes a chance to get out-of-doors and into nature where he
experiences leisure and the opportunity to be with good friends.
Many scholars believe freely chosen activities of recreation and leisure are
paramount to quality of life, and that those activities become even more central in the
lives of older individuals, especially those who have retired (J. Kelly, 1993; Tinsley,
Colbs, Teaff, & Kaufman, 1987). Freysinger (1999) wrote that there is both continuity
and change in leisure behavior across the human lifespan. Continuity exists when the
same activity is engaged in because of familiarity, and the continual enjoyment it brings.
Change may occur, however, due to altered roles, responsibilities, time, resources,
opportunities, and interests. Change and continuity, however, apply not only to types of
activity, but frequency of participation, as well as motivation, satisfaction, and meaning.
Long (1987) specifically looked at continuity and leisure related to retirement for men,
and concluded that men who experienced the least changes associated with their leisure
adapted best to their retirement.
Strain, Grabusic, Searle, and Dunn (2002) examined characteristics such as age,
gender, education, health, marital status, self-rated health, and functional ability. They
suggested continued education about leisure serves as a means of enhancing older adults'
participation in desired activities and activity modification may compensate for
diminished functional ability. Their study failed to demonstrate, however, a consistent
pattern related to the continuation or ceasing of leisure activities; a finding perhaps due to
individual differences and a wide variation in leisure interests and participation. Menec
(2003) also stressed the importance of various activities in successful aging, and that
different types of activities have different benefits. Activities that are productive and
social in nature, including many distinctly leisure endeavors, result in better functioning
and greater longevity. Whereas activities, including those of a more solitary nature, may
have psychological benefits, provide a sense of continuity or engagement with life, and
foster renewed meaning.
According to Sinick (1980), the attitude of men when faced with the prospect of
retirement ranges from excitement to fear or dread. Many view retirement as an
opportunity to spend more time doing things they are interested in, and thus take
advantage of chances to be creative and productive. For others, however, growing older
and facing retirement creates a sense of loss and emptiness. This is heightened when a
man's identity is centrally tied to societal norms that place great value on workplace
contributions. In such situations, a sense of powerlessness and despair may emerge. The
prospect of diminished capacity and eventual death also add to the growing list of
concurrent stressors that are faced (Blum, 1990). And although older people may be more
resilient to individual stressors, they tend to face more stressors simultaneously, such as
comorbid conditions, loss of significant others, declining physical or mental abilities, and
diminished income (Duffy & Iscoe, 1990). A diagnosis of cancer, further potentiates an
abrupt realization of mortality, and motivates men to complete unfinished business, gives
their life clarity, and helps them to prioritize the activities that carry the greatest meaning
(McQuellon & Hurt, 1993). For others, though, the experience of being told they have
cancer, and the decision of which treatment to use, if any, is a central part of a major
crisis (Lewis, Gottesman, & Gutstein, 1979; Weisman & Worden, 1976). Efforts to
scientifically understand leisure's role during times of illness such as cancer, or the
impact of a cancer experience on leisure attitudes and behavior, are needed to be able to
adequately address the holistic needs of the man with prostate cancer.
The Meaning of Leisure
A key attribute of the research design of this study is its intent to examine the
meanings people ascribe to leisure. Settersten (2002) recently studied meaning in later
life, and wrote that leisure, including volunteerism, is a source of meaning within the
social domain for older individuals. Specifically looking at leisure, Watkins (2000)
explored three research questions related to this topic. The areas investigated were: (a)
how individuals gain knowledge about leisure and form a meaning of leisure, (b) how
different individuals form different meanings of leisure (even if the experience or activity
is essentially the same), and (c) how individuals change their meanings of leisure over
time or place.
These questions are based on the assumption that the meaning of leisure results
from knowledge gained through experience, and that individuals have the capacity to
learn different leisure meanings and modify existing ones. Watkins' (2000) examination
led to the description of four traditional paradigms used to study leisure meaning: (a)
behaviorism, (b) cognitivism, (c) individual constructivism, and (d) social constructivism.
Behaviorism is described as the idea that people gain knowledge about an event through
the use of their senses. By associating the stimulus associated with an event with a
particular behavioral response, the behavior becomes habitual, and meaning is inferred.
Cognitivism applies to knowledge obtained from within the mind that is used to help
make sense of phenomena knowledge that otherwise might be unstructured, or without
meaning. Individual constructivism suggests that "knowledge is not passively acquired
from the outside world or implanted as a priori representation in the mind but is
constructed by the mind's ability to actively explore and develop its own meaningful
accounts" (pp. 97-98). This paradigm is based on many of the tenets of symbolic
interpretation, and allows for differences in meaning, depending on variations of a
person's conceptual abilities and their changing needs. Social constructivism is described
as obtaining knowledge or meaning as a result of participation in social practices that are
subject to structuring influences of historical processes and sociocultural beliefs. A fifth
paradigm, experientialism, is presented by the author as viewing knowledge "as an
experience of the relationship formed between an individual and some aspect of his or her
world" (p. 102), and implicitly involves the person's awareness of him or herself as an
individual (Watkins, 2000). The meanings men place upon their leisure, and the
construction of those meanings as it relates to their prostate cancer experience, is of
central interest to this study.
Prostate Cancer Etiology and its Threat to Health
Prostate cancer is a very commonly diagnosed type of cancer in men, second only
to skin cancers. In the United States in 2003, an estimated 220,000 men will be newly
diagnosed with prostate cancer, and approximately 28,900 men will die as a result of this
disease. Within the U.S., Florida ranks second behind California for the number of men
(15,800) who are expected to be diagnosed with prostate cancer this year (American
Cancer Society, 2003). The sheer numbers of older American men who have been
diagnosed with prostate cancer, or are likely to be diagnosed in the future, demonstrates
the need to understand issues related to the general health and well-being of older men
(Kinsella, 2000). Individually, men who are diagnosed with prostate cancer must learn to
cope with the disease and subsequent treatment that will likely impact physical and
psychological well-being (Kunkel et al., 2000). The incidence of prostate cancer has
generated greater attention than ever before within our society. In 2000, U.S. News and
World Report featured a cover story about prostate cancer, in which it was stated that
"prostate cancer is an inglorious disease, rife with indignities that cut to the core of male
sexuality and self-esteem" (Brink, 2000, p. 66), and that men with prostate cancer today
are "part of a generation of men in their 40s and 50s who are forced to understand the
male body and its betrayal in a way never required of their fathers"(p. 66) For many, it
is a threat to overall quality of life, and it challenges their vocational, familial, and leisure
lifestyle (Freidenbergs & Kaplan, 1999).
Risk Factors and Cancer Screening
While it is not known what causes prostate cancer, certain risk factors have been
shown to be associated with the development of the disease (Chan, Stampfer, &
Giovannucci, 1997). A risk factor is any characteristic or behavior that increases a
person's chance of acquiring a disease. While some risk factors can be accounted for and
modified through behavioral changes, others are uncontrollable. Risk factors that cannot
be changed include age, race, nationality, and family history. Examples of risk factors
that can be modified include diet, tobacco and alcohol use, weight, and physical activity.
Race is an important consideration since, for reasons not fully known, prostate cancer is
more prevalent among African-American men than Caucasian men (Hoffman et al.,
2001). Nationality is also a factor, as prostate cancer is most common in North America
and northwestern Europe than in other parts of the world. It is also known that men with
close family members who have had prostate cancer (i.e., fathers or uncles) are at a
greater risk. A high-fat diet, body composition, weight, and regular physical activity are
also variables that have been studied as to their relationship to prostate cancer risk (I.
Lee, Sasso, H., & Paffenbarger, R., 2001; Society, 2002). It is important to note,
however, that as with other parts of the body, the prostate may undergo changes due to
normal aging, or the effects of non-cancerous disease. For example, benign prostatic
hyperplasia (BPH) is a condition wherein the prostate enlarges very often due to
hormonal changes associated with aging. Though rarely a threat to health, BPH can result
in pressure on the urethra and difficulties in urination (Bostwick et al., 1999).
Screening is important for all men, but especially for those at risk for the
development of prostate cancer. And while digital rectal exams are a routine procedure
for older men, the use of methods such as testing for levels of prostate-specific antigens
(PSA) and biopsies of prostatic tissue allow for earlier detection of prostate cancer. For
men who are diagnosed early, there is time for a thorough gathering of information and
consideration of treatment alternatives (Nash & Melezinek, 2000). However, some
controversy exists surrounding the use of PSA tests. Some consider the PSA test to be the
best marker for cancer, while others view it with caution as it detects cancers that are so
minute some feel they should not be treated (Ganz & Litwin, 2001); thus adding to the
anxiety and uncertainly that can exist while making decisions about treatment options.
For many, it may be a question of prolonged life with the potential of diminished quality
of life, versus the possible significant risks associated with not actively pursuing
treatment, but thus avoiding side-effects which can be stressful.
Treatment for Prostate Cancer and Potential Side Effects
Prescribed treatment for prostate cancer depends upon the age of the man, the stage
of the cancer, and other medical conditions that are present. Surgery and radiotherapy are
commonly performed in an attempt to cure the patient of the cancer. Radical
prostatectomy is the surgical removal of the prostate gland. Procedurally, there are
different ways of performing the surgery (i.e., retropubic or perineal methods), depending
on various factors such as whether efforts to preserve nerves will be made to preserve
erectile function. Cryosurgery aims to kill cancer cells through freezing prostatic tissue.
Radiotherapy delivers controlled doses of irradiation to the cancerous tumor and
surrounding tissue. Hormonal therapy is commonly recommended to thwart the
development of cancerous tissues, and chemotherapy is often a prescribed alternative for
metastatic disease when the cancer has spread beyond the prostate to nearby lymph nodes
or pelvic bones (W. Kelly & Dodd, 2001). For men with low-grade or early-stage tumors,
or who are much older, expectant therapy or "watchful waiting" may be recommended.
This consists of careful observation without any active treatment (Ko & Bubley, 2001).
As is seen in Table 1 below, each of these treatment alternatives, despite their respective
advantages, is known to have potential side effects (Talcott et al., 1998).
Table 1 Advantages and Potential Side Effects of Prostate Cancer Treatments
Treatment Advantage Potential Side Effects
Radical Removal of the prostate gland and Erectile dysfunction and urinary
Prostatectomy accompanying cancer using a single incontinence are common. Pain
procedure intended to cure the disease, and fatigue are also frequently
experienced after surgery, but is
typically brief. Psychosocial side
effects will vary for each
individual, but may include
anxiety, identity crisis, uncertainty,
depression, and isolation
Cryosurgery Use of cooling probes that cause the death Physical side effects may include
of prostatic tissue through freezing. This urinary retention, perineal pain,
is a newer procedure and its efficacy is erectile dysfunction, and rectal
still being fully investigated. fistulas. Psychosocial side effects
will vary for each individual, but
may include those mentioned for
Radiation therapy Delivery of precise doses of irradiation to Erectile dysfunction, urinary
the cancerous tumor intended to cure the incontinence, and bowel problems.
disease. Psychosocial side effects will vary
for each individual, but may
include those mentioned for radical
Hormone therapy Typically involves taking a pill, therefore Depends upon the specific
less invasive than surgery or treatment used, but may include
radiotherapy. If side effects become too water retention, hot flashes, breast
severe, treatment can be discontinued and growth and tenderness, and nausea.
symptoms may subside. Psychosocial side effects will vary
for each individual, but may
include those mentioned for radical
Expectant therapy No treatment is administered, thus no side Psychosocial side effects will vary
effects other than those caused by the for each individual, yet knowing
cancer itself. that one has cancer and no
treatment is occurring can cause
increased anxiety and uncertainty
for patients and family members.
Information for this table obtained from Curtis and Juhnke (2003) and Kelly and Dodd (2001).
Psychosocial Adaptation, Coping, and Health
Studies that focus on physical side effects are numerous, and generally fall in the
category of examining health-related quality of life (Wei et al., 2002). While a great deal
of literature exists pertaining to the effect of prostate cancer on physical aspects such as
urinary incontinence and erectile dysfunction (Eton & Lepore, 2002), fewer studies have
focused on aspects of psychological, social, or emotional well-being of older men with
prostate cancer. The term psychosocial has been defined as psychological and social
issues related to the response to physical disease and disability, decreased activity level,
behavioral dysfunction, general health status, and overall quality of life (Morrow et al.,
1978). The relative paucity of research about the psychosocial aspects of prostate cancer,
and the limited number of interventions in this area, has resulted in a definite gap in
scientific literature. More information on this topic will help health care professionals
better consult with and meet the needs of men with prostate cancer, including their needs
beyond merely the physical domain.
Weber (2003) reviewed the literature between 1970 and 2002, and found that over
12,000 manuscripts had been written related to prostate cancer treatment. Of those,
however, only 8% included keywords embodying psychosocial issues as descriptors of
the research. Even more concerning is that only five known studies have reported the
results of intervention research that sought to improve the psychosocial well-being of
men with prostate cancer (e.g., (Johnson, 1996; Kim, Roscoe, & Morrow, 2002; Weber,
2002) (Johnson, 1996; Kim et al., 2002)). An aim of this research study was to add to the
knowledge base about leisure's role within the context of psychosocial adaptation, and
thereby enhance the efficacy of potential interventions for this population.
A diagnosis of cancer is likely to bring with it certain levels of anxiety and
uncertainty, numerous questions, and a need for information and answers. Anxiety stems
from fear and concern about loss of bodily functions, pain, treatment alternatives and
their potential side effects, possible loss of independence and social isolation, financial
concerns, and issues related to returning to work or future involvement in civic functions
or volunteerism. Uncertainty about the future, and worries about family and loved ones
and if or how relationships may change, are common (Freidenbergs & Kaplan, 1999).
Fear and concern about the possible loss of bodily functions (e.g., potency), pain, side
effects of treatment, negative body image or sense of self, and potential loss of control or
independence can be significant. Worries about how others will perceive him and his
situation (concurrent with possible incontinence) may lead to social isolation and, if
financial concerns exist, the situation may indeed prove troublesome (American Cancer
Society, 2002). The need for certain types of information required to make decisions
related to treatment will vary because of the unique educational needs and background of
each individual (Visser & van Andel, 2003; Wong et al., 2000).
Individual issues related to the diagnosis and treatment of individuals with prostate
cancer may include depression, grief, anxiety and stress, hopelessness, fatigue and
diminished physical mobility, pain management, social isolation, impaired relationships,
decreased participation in free-time activities that previously were enjoyable and
provided a sense of satisfaction, and diminished sexual function (Freidenbergs & Kaplan,
1999; Livneh & Antonak, 1997). Each of these issues deserves continued study, in
addition to the relationship they have with one another. For example, Gil and Gilbar
(2001) studied and found a link between depression and hopelessness among cancer
patients. Another study reported an association between diminished physical functioning
and depression (Kurtz, Kurtz, Stommel, Given, & Given, 2001). In today's health care
community, approaches that are holistic in nature and take into account the entire person
and the constellation of issues that may be present is a preferred method of service
delivery (Short & Talley, 1999).
All of these factors, when viewed in relation to the unique background, personality,
and life experience of the man involved, may impact psychological and social well-being,
vocational opportunities (present and future), as well as pursuit of leisure and recreational
activities significant to one's quality of life (Livneh & Antonak, 1997). The process of
adjustment and adaptation to prostate cancer and its effects helps an individual maintain
their desired quality of life. As a concept, quality of life continues to be an important
focus of scholars, researchers, and practitioners within rehabilitation sciences (Renwick
& Friefeld, 1996); and many feel quality of life should be the primary outcome of
rehabilitation (Bishop & Feist-Price, 2001; Livneh, 1988). Quality of life, however, is a
concept that many feel is a combination of economic, social, emotional, familial, and
health-related factors -- factors that continue to theoretically and methodologically
challenge scholars and practitioners who study these type of questions (Hunt, 1997).
Men with prostate cancer likely face the need to cope and adapt to the physical,
emotional, and psychological challenges present in each unique situation. Weisman and
Worden (1976) labeled the diagnosis of cancer and the subsequent 100 days as an
"existential plight." Metaphorically, the term plight is used to describe the varying
concerns a person may have that affect his life. For example, a person is likely to
consider the coping strategies that are available and decide if he has the necessary resolve
to carry them out to a satisfying conclusion. The experience of dealing with cancer may
also include coming face-to-face with one's vulnerability, and each of these concepts -
vulnerability, coping, and resolve -- will, according to the authors, collectively predict the
nature of an individual's mood disturbance following cancer diagnosis (Weisman &
An understanding of typical ways that people cope or grieve is helpful to this
discussion. Kubler-Ross (1969) is noted for her work in promoting understanding of what
occurs when individuals are faced with the prospect of their own mortality or possible
death. She suggests that coping and grieving happens in stages of: (a) denial, (b) anger,
(c) bargaining, (d) depression, and (e) acceptance. Denial occurs when an individual is
unable to admit to themselves that serious consequence (i.e., loss of function or even
death) is possible. Anger is manifest when the pain or fear of loss is expressed and
projected onto others. Bargaining is an effort at overcoming the serious illness or
possible death by negotiating, perhaps with doctors or a higher power, for longer life; and
depression may coincide with a full realization of potential mortality or disabling
conditions. Acceptance occurs when grieving transcends into acknowledgment and
preparation for what the future may bring. A man who has been diagnosed with cancer
may experience any or all of these stages.
Smart (2000) proposed a slightly different model one that uses phases instead of
stages to describe what happens psychologically and emotionally when people attempt to
adapt to situations. Smart theorized that it was possible that people might experience
stages of: (a) shock; (b) disbelief or denial; (c) depression or mourning; (d) psychological
regression to an earlier, more favorable, or "normal" time of life; (e) personal questioning
and/or anger; and (f) integration and growth. For the man with prostate cancer, he (or his
family members) may experience any or all of these phases, in no set or pre-determined
order, and spend varying amounts of time and energy within the different phases.
Regardless of which model is used, it is very likely that men diagnosed with prostate
cancer, along with their family and friends, will experience some change in their lives
and relationships (e.g., (Beatty, 1978).
In addition to the challenges men face when diagnosed with and treated for prostate
cancer, one must recognize that wives, partners, and family members are also likely to be
affected by the disease. Wives especially are known to carry a unique burden is assisting
their husbands to monitor and care for health-related conditions (Davison, Degner, &
Morgan, 1995; Norcross, Ramirez, & Palinkas, 1996). Prostate cancer and treatment are
likely to impact normal day-to-day activities, involving work, leisure, and family
activities or obligations (Gray, Fitch, Phillips, Labrecque, & Fergus, 2000). For all those
involved, health-related problems and caregiver burden has its own set of physical,
emotional, and psychosocial problems. It is not easy for many to separate work from
leisure or vice versa (Sanford, 2002), and family issues may be central to either or both
(Snir & Harpaz, 2002).
When told they have prostate cancer, older men may experience depressive
symptoms, guilt, denial, anger, and threats to body image and self-esteem that are
distinctly specific to issues of gender and masculinity (Livneh & Antonak, 1997). Men
are often characterized as unwilling, or unable, to ask for or seek help when experiencing
a problem. Likewise, men are believed to deal with illness and disease differently than
women. The sexes differ not only with regard to their reproductive organs and physical
bodies (Witzemann & Pardue, 2001), but also in the way they think, feel, and behave
when confronted with situations that may illicit the need to seek help (Addis & Mahalik,
2003). Environmental, cultural, and psychosocial factors also play a prominent role in
masculinity, and some researchers have reported that certain symptoms of male
depression (e.g., low impulse control, alcohol misuse, aggressive behavior) are gender
specific (Kiss & Meryn, 2001). Porter, Marco, Schwartz, and Neale (2000) reported that
men faced with illness cope in ways that are problem-focused, rather than emotion-
focused. Moynihan (2002) theorized similar gendered responses, concluding that while a
woman's adjustment to cancer is conceptualized to be within herself, a man's adjustment
to cancer occurs outside the person in the context of an information-gathering solution.
Consideration of these and other salient issues are necessary to adequately understand,
investigate, and plan interventions for the promotion of health and quality of life for men
with prostate cancer.
World Health Organization and the ICF Model
From a global perspective, the World Health Organization (WHO) seeks to attain
the highest standard of health for every human being. The WHO (1948) defined health as
"a state of complete physical, mental and social well-being and not merely the absence of
disease or infirmity". This conceptualization has been used as a foundation for the
construction of theory and practice, as well as for financial reimbursement to health
providers. The latest WHO model describes the relationship between a person's health
condition, their level of activity and participation, and the influence of other personal and
environmental factors. Labeled the International Classification ofFunctioning, Disability
and Health (ICF) model (World Health Organization, 2001), this conceptualization is a
blend of medical and social factors into a multi-faceted, non-directional biopsychosocial
model (Bickenbach, Chatterji, Badley, & Ustun, 1999). This model may be helpful as a
guide to frame the health condition of men with prostate cancer and their ability to
perform expected activities and participate in normal roles. As a necessary component of
health, the ICF conceptualization places more importance on the opportunity and abilities
of a person to participate in and engage in activities as a necessary component of health,
than in the existence or absence of a disabling condition. Thus, simply having prostate
cancer or receiving a certain type of treatment does not automatically imply that a man
will have a disability or disabling condition that subjectively lowers his health or quality
Health is not, then, purely determined by body functions or level of impairment. In
the ICF model, the term activity refers to being able to execute and complete tasks.
Participation implies being able to complete tasks or duties as part of being involved in
life situations. Within the conceptualization of activity and participation, activity
limitations are difficulties or problems experienced by a person when attempting to
perform an activity, and participation restrictions are challenges experienced by a person
when seeking to be involved in actual life situations. Other issues are paramount to this
conceptualization of health. Environmental factors are aspects of the physical, social, and
attitudinal environment within which people live. Personal factors, though not explicitly
defined in the ICF due to the large cultural and social disparities that exist, encompass
variables such as gender, race, age, lifestyle, fitness, upbringing, coping styles, education,
vocation, psychological assets, and overall behavior styles or character (World Health
Organization, 2001). Any of these factors, including anxiety, uncertainty, threats to
masculinity, or altered role identity, can impact the health condition of a man with
Positive leisure involvement results not only in the maintenance or enhancement of
physical health, but psychological, emotional, social, and spiritual health as well
(Godbey, 1999). The WHO, within their ICF conceptualization, lists "recreation and
leisure" as a category within the activity and participation domain, and recognizes that
recreation and leisure are important avenues of functioning in relation to the individual's
health condition and environmental factors (World Health Organization, 2001).
Coping and Leisure
For individuals coping with the daily stresses of life, leisure has been identified as
having a significant role. Iwasaki and Mannell (2000) reported several important aspects
of leisure that worked to counter or ameliorate the effects of stress. According to these
authors, leisure: (a) is a coping mechanism, (b) promotes autonomy, (c) facilitates
friendship and companionship, and (d) enhances mood. More specifically, leisure is
believed to promote coping strategies (e.g., escape-oriented activities designed to keep
people's minds and bodies busy), develop and reflect personality characteristics, help
create and maintain people's friendships, provide discretionary and enjoyable shared
experience as a form of social support, and promote positive mood while reducing
Settlage et al. (1988) theorized that having a serious illness (such as prostate
cancer) may act as a catalyst for new development and a renewed exploration and
discovery of self. Serving as a process-oriented model of adult development, decline or
loss of physical function, relationships, and resources are seen as possible traumatic
experiences that may then be a primary stimulus for development. Important elements of
the model include: (a) tension and conflict, (b) resolution, and (c) changes in self-
representation. Within this conceptualization, an individual (e.g., a man diagnosed with
or treated for prostate cancer) may perceive aspects of the experience as a challenge, and
desire or feel the need to acquire new skills, adapt and find new ways of managing
feelings, and may acquire new attitudes and values. Challenges of coping with prostate
cancer may result in a person moving from being uncertain to the individual being goal-
oriented. This may include a transition that might be complicated by psychological and
emotional tension that may spill over into relationships with others. For some, this
transition is natural and easy, but for others, it may be a time of intrapersonal or
interpersonal conflict, when the desire for change evokes fear and anxiety about unknown
consequences (Settlage et al., 1988). These early stages are likely to invoke strategies of
psychosocial adaptation, and may involve or impact leisure attitudes or behaviors.
In the later stages of this conceptualization, resolution may occur, involving either
mastery of new skills and the integration of new ways of coping and adapting, or a sense
of failure or despair if self-appraisal is less than positive. The outcome from the
resolution stage may be frequently re-assessed as time passes and the cancer experience
gets further away. This process, regardless of the outcome, culminates in a change in self-
representation, and one's views and recollection of the meanings ascribed to the original
challenge are altered. Theoretically, outcomes include new functions (psychological,
emotional, social, physical, or spiritual), refined pre-existing abilities, reorganized
cognitive and emotional structures, and a higher, or better, level of functioning (Settlage
et al., 1988). Within the context of coping, adaptation (resolution), and possible changes
in one's self, leisure is thought to likely impact a person's appraisal of the meaning of life
and one's priorities. Leisure can either be positively or negatively impacted by this
appraisal (D Kleiber, Brock, Lee, & Dattilo, 1995).
Specific to men's issues, (S. Hutchinson & Kleiber, 2000) studied the role of
leisure and recreation and found that notions of masculinity were impacted by one's
disability status. This research examined magazine portrayals of men's recovery from
spinal cord injury (SCI), and considered the possible influence of these portrayals on their
adjustment following being injured. They found that a theme of "heroic masculinity" was
identified in the portrayals, and, that, according to the authors, such a limited
representation may actually limit men's appraisal or understanding of successful
Other researchers have generated theories related to the concept of development
and growth following illness or onset of disability. Though many intra- and interpersonal
factors may exist, having prostate cancer and undergoing treatment may be seen as a
crisis, or, retrospectively, as a critical event in a man's life, thereby becoming a "turning
point" wherein he comes to realize he is not the same person he was before (A. Strauss,
1997). Posttraumatic gi ,i\ iti (Tedeschi & Calhoun, 1995; Tedeschi, Park, & Calhoun,
1998) is a phenomenon experienced when people develop beyond their previous level of
adaptation, when they acquire greater psychological functioning or life awareness. Often
based in existential psychology, which seeks to give meaning to life's events or
circumstances, opportunities are thought to exist for growth as a result of trauma and
suffering. This conceptualization of posttraumatic growth is based upon, and related to,
past work on resiliency (Harvey, 1996), personality characteristics manifested as a
hardiness (Florian, Mikulincer, & Taubman, 1995), and stress inoculation
(Meichenbaum, 1985), stress management training (Pierce, 1995), and sense of coherence
(Schaubroeck & Ganster, 1991). Specific to prostate cancer, Curtis and Juhnke (2003)
reported that a healthy sense of coherence, defined as a dynamic feeling of confidence, is
critical for older men with the illness. The authors report that the most important
component of the sense of coherence is meaning, which is defined as "the degree to
which one uses life events to learn more about oneself and others" (p. 164). A person with
a high sense of meaning will "remain open to the many lessons a cancer diagnosis can
According to Tedeschi et al. (1998), several types of posttraumatic growth may be
seen. First, changes in perception of self may be observed as (a) viewing oneself not as a
victim, but a survivor; (b) enhanced self-reliance; and (c) heightened awareness of
vulnerability or sense of mortality. Second, changes in interpersonal relationships may
include (a) an increased self-disclosure and emotional expression and (b) greater
compassion or empathy for others. Finally, changes in philosophy toward life may
involve (a) a reassessment of priorities and appreciation of life, (b) a heightened sense of
meaning, (c) possible spiritual development, and (d) an accumulation of wisdom.
Regarding research design, Tedeschi and Calhoun (1995) suggest that qualitative
methods, such as interviewing, are "ideally suited for the qualitative assessment of
posttraumatic growth" (p. 34).
Leisure has been theorized as activity that is inherently self-protective and
restorative (D. Kleiber, Hutchinson, & Williams, 2002). During negative life events,
leisure has been conceptualized to: (a) serve as a distraction, (b) act as a catalyst
generating optimism about the future, and (c) preserve of a sense of self. Hutchinson,
Kleiber, Loy, and Datillo (2002) later tested this theory within a qualitative study of
sixteen individuals who had suffered a traumatic injury or had experienced the onset of a
chronic illness. In this study, leisure was found to serve several important functions. First,
leisure provided a psychological "time out," allowing escape from the physical confines
of the body or a person's problems and helping to keep one's mind off of the illness or
related challenges. Second, leisure acted as a catalyst to sustain or bolster coping efforts.
Third, leisure fostered a sense of purpose and competence that provides strength for more
difficult aspects of living. Fourth, leisure served as a mechanism for keeping busy and
providing structure, especially for those not employed. Finally, leisure provided a context
within which belonging and acceptance comes as a result of shared leisure interests, not
just shared disability status. Herzog, Franks, Markus, and Holmberg (1998) also studied
the positive effect of activities on well-being, and found that leisure activities, defined in
their research as "activities performed for their own sake, rather than for their
consequences" (p. 180), were observed to provide a sense of competence and self.
The nature and function of leisure for men following prostate cancer diagnosis and
treatment is unknown. As more men are diagnosed and treated, exploration of leisure's
role can provide important information. This is especially important in men who are
diagnosed earlier in their lives due to an increase of the time potentially impacted by the
physical and psychosocial effects of the disease.
The three research questions for this study are:
* What are the key psychosocial variables and conditions that impact the process of
coping and adjustment related to leisure following prostate cancer diagnosis or
* What function does leisure play in the lives of men with prostate cancer, and how
does the experience with prostate cancer interact with leisure attitudes, choices, and
* What role does leisure play in potential changes or personal development of men
who are survivors of prostate cancer?
Answers to these questions will build knowledge and understanding about critical
issues salient to patients and health care providers. Ultimately, it is hoped that this
information will lead to new and improved interventions that will more fully meet the
needs of older men.
Once diagnosed with prostate cancer, most men adapt to the fact that they have a
potentially serious illness one that may pose a threat to their life, health, and perception
of quality of life (R. Lee & Penson, 2002). This chapter provides a description of the
research methods employed in the present study. It focuses on topics of research design,
the selection of participants, the interview process and data collection, analysis of the
data, standards for the quality of conclusions, methodological variability, and ethical
considerations. An overview of the demographics of study participants, along with a brief
description of the pilot study conducted as part of this research, is also included.
The primary objective of this research is to examine quality of life factors among
men who have been diagnosed with and treated for prostate cancer. How men adapt, what
they use as coping strategies, and their actual lived experience (including aspects related
to leisure) are questions that can be addressed through qualitative inquiry (Strauss &
Corbin, 1998). The present study is designed to determine (a) the key psychosocial
variables and conditions that impact the process of coping and adjustment related to
leisure following prostate cancer diagnosis or treatment, (b) the function leisure plays in
the lives of men with prostate cancer and how the experience with prostate cancer
interacts with leisure attitudes, choices, and behaviors, and (c) the role leisure plays in
potential changes or personal development of men who are survivors of prostate cancer.
The grounded theory approach, including researcher-as-instrument and sensitizing
concepts, are explained in the next sections.
The Grounded Theory Approach
Qualitative methodology is more than a set of procedures. It provides a way of
thinking about and viewing the world in a unique and deeply personal way. Strauss and
Corbin (1998) describe the grounded theory approach as a "general methodology for
developing theory that is grounded in data systematically gathered and analyzed. Theory
evolves during actual research, and it does this through continuous interplay between
analysis and data collection" (A Strauss & Corbin, 1998, p. 158). This approach stands
in sharp contrast to quantitative methodologies that too often oversimplify the complex
nature of real-world experiences had by human beings (Patton, 1990).
The grounded theory approach is based on over-arching principles of pragmaticism
and symbolic interactionism. Pragmaticism, a philosophical doctrine espoused by
Charles S. Peirce (1839-1914), states that the meaning and the truth of any idea are
functions of its practical outcome. Peirce posited his idea of pragmaticism as a theory of
meaning, and believed there is an intrinsic connection between action (behaviors) and
meaning (Ketner, 1995). Symbolic Interactionism is an orientation of social psychology,
based primarily on social behaviorism and the writings of George Herbert Mead (1863-
1931). Symbolic Interactionism focuses on the symbolic nature of human interaction,
forms of communication (linguistic and gestural), and how language is used to form
mind, self, and society (Blumer, 1969). Procedurally, grounded theory is "designed to
develop a well integrated set of concepts that provide a thorough theoretical explanation
of social phenomena ... [that] should explain as well as describe" (Corbin & Strauss,
1990, p. 5). A thorough explanation of social phenomenon is generated when a researcher
can present and validate a theory that is pragmatic, and embodies the meaning(s)
associated with human interaction and communication.
Little is known about the role of leisure and its relationship within the psychosocial
adaptation of men and the prostate cancer experience. Therefore, use of the grounded
theory method as a qualitative approach is an appropriate and effective strategy to
identify and understand important, but heretofore unidentified, issues of these men
related to leisure. Two additional principles, change and determinism, are key to the
development of grounded theory. The principle of change pertains to the fact that
phenomena are never seen as uniform or static, and are thought to change continually in
response to evolving conditions. The process of documenting change is central to this
methodology. Determinism is the control people have over their destinies, and is
manifested in the way they respond to the conditions they face. Using a grounded theory
approach allows the researcher not only to uncover relevant conditions and processes
(i.e., salient issues related to the cancer experience, such as social support or the use of
leisure to mentally get away from one's problems), but to determine how individuals
respond to changing conditions and the apparent consequences of their choices or
behavior (Corbin & Strauss, 1990).
Qualitative methodology using the grounded theory approach relies heavily on the
abilities of the researcher. Skills a grounded theorist should seek to obtain and improve
include: (a) the ability to step back and critically analyze situations, (b) the ability to
recognize potential bias, (c) the ability to think abstractly, (d) the ability to be open to
productive criticism, (e) an awareness of and sensitivity to the words and actions of those
being studied, and (f) a sense of purpose and dedication to the process by which
meaningful results emerge (A Strauss & Corbin, 1998). These characteristics are
elaborated on more fully in later sections of this chapter.
Researcher as Instrument
Many, if not all, forms of qualitative inquiry rely heavily on the researcher (or
research team) acting as the primary instrument for data collection and interpretation. As
part of the research design, I served as the "instrument" by which data was collected.
This framework of researcher-as-instrument provided several advantages specific to this
research situation (Lincoln & Guba, 1985). Some of these advantages include: (a)
responsiveness, (b) adaptability, (c) holistic emphasis, and (d) opportunities for
clarification and summarization. Within the framework of researcher-as-instrument,
responsiveness implies that the researcher is able to sense and react to personal and
environmental cues that may exist. Adaptability means that the researcher can collect
information about multiple factors at multiple levels, simultaneously. Having a holistic
emphasis means that the researcher sees and appreciates the world that surrounds
participants, and existing phenomenon and context are examined holistically as separate,
yet inter-related activities. Finally, opportunitiesfor clarification and summarization
infer that the researcher has the "unique capability of summarizing data on the spot and
feed[s] them back to a respondent for clarification, correction, and amplification" (p.
Researchers need to be aware of their own frames of interpretation and that a
researcher should be aware of our perspectives and experiences within a unique cultural
background (Caroleo, 2002). Given this reminder, I felt it important to state that neither I,
nor anyone in my immediate family, has had to deal with the ramifications of a cancer
diagnosis and treatment. I did have, however, an extended family member (a cousin,
Angel) who passed away several years ago after an extended struggle with a rare form of
cancer. Extraordinary efforts were made to extend her life, and I was always impressed
by the courage she and her husband displayed. Angel was even able to have a child and
see her daughter grow up to the age of five before Angel's body ultimately succumbed to
her disease. At the end, there was nothing medicine could do except to ease the pain. I
remember sitting by her bedside one evening, just hours before she passed, shocked and
amazed at the devastation that cancer can cause.
That experience with Angel, along with experiences I have had within other
professional settings, has fostered in me a greater appreciation for life and health, and has
kindled a determination to help others overcome physical, psychological, spiritual, or
emotional challenges. This type of personal experience, coupled with experience and
interest in understanding more about the impact of disability or disabling conditions on
people and their leisure lifestyles, made doing this research about men with prostate
cancer more satisfying both personally and academically.
A sensitizing concept is a "construct that is derived from the research participants'
perspective, uses their language or expression, and that sensitizes the researcher to
possible lines of inquiry" (van den Hoonaard, 1997, p. 28). This concept not only applies
to what is derived directly from interviewees' articulation of events, but also suggests
meanings that people attach to the world and events around them, thereby guiding the
researcher's inquiry. Sensitizing concepts suggest directions for explanation and
description, and alert the researcher to potentially fruitful avenues of further exploration.
In other words, a sensitizing concept is a starting point from which to think about an issue
or experience that allows the researcher to become more knowledgeable or sensitized to a
particular aspect or category of data about which little is known or that was unexpected.
Use of such a framework recognizes that the world experienced by others is real, ever
changing, and full of passion and meaning (Reinharz, 1993).
Further, sensitizing concepts empower the researcher to consciously move toward a
neutral ground where the ideas of society and the individual meet with those of the
scientist, keeping the language of the participant in order to maintain empirical roots. The
use of sensitizing concepts also enables the researcher to "frame the studied activity as a
social process" (van den Hoonaard, 1997, p. 28). The researcher can thereby construct an
analytical framework, which then acts as a "gateway" to a new avenue of inquiry and
theory. For example, within the present research, I was struck by the often frequent and
powerful comments several men made about the role of religion and spirituality in their
lives. This theme or line of inquiry thus remained part of the interview process
throughout the study with some men supporting and others discounting the role of
spirituality in their experience with cancer.
When seeking sensitizing concepts in conjunction with the use of the constant
comparison method (fully described later), generalization or the transfer of findings to
other social settings or situations can occur (e.g., for persons with other types of illnesses
or threats to health) with greater confidence. As a researcher, having theoretical
sensitivity refers to "the attribute of having insight, the ability to give meaning to data,
the capacity to understand, and capability to separate the pertinent from that which isn't"
(Strauss & Corbin, 1990, p. 42). It is important to note that sensitizing concepts evolve
with the analysis of data, rather than from ideas that existed before the collection of
information (van den Hoonaard, 1997)
Developing Grounded Theory
As described earlier, the "strongest case for the use of grounded theory is in
investigations of relatively uncharted water, or to gain a fresh perspective in a familiar
situation" (Stern, 1995, p. 30). In order to obtain a satisfactory outcome, specific
procedures for grounded theory have been established. First, the data collection and data
analysis processes are interrelated. This means that analysis occurs from the very outset
of data collection, after the very first interview. This analysis is used to assimilate all
seemingly relevant issues into the next interview. Second, concepts are seen as the basic
unit of analysis. As themes develop, they are identified and labeled. Third, concepts that
relate to a similar theme, called phenomena, are identified. These are grouped to form
categories that are at a higher or more abstract level than the concepts they are made from
(Corbin & Strauss, 1990).
As an example, the decision-making process used by a person to determine what he
or she does with free time on a Friday night, and the reasons given for why he or she
finds a particular free time activity personally satisfying, are separate concepts. The first
concept is the basis of motivation and the other is a reflection or recollection of past
experiences, personal needs, and desired outcome. But together, these concepts both
relate to use of free time and are symbolic of leisure behavior, or may be set within the
category of leisure motivations. During further analysis, leisure may be conceptualized as
what a person does (based on the activities participated in) or how he feels afterward
(subjective state of wellness). Within the realm of older men's life experience, leisure
choices may be hypothesized to serve as an indicator of the emotional state manifest in a
man's thought processes and subsequent behavior. Likewise, grounded theory may serve
to prove or dispel the notion that men engage in leisure differently than before diagnosed
with prostate cancer.
The use of constant comparison is a very important analytical tool that sets
grounded theory apart from other forms of qualitative research. Constant comparison
means that as incidents are noted, they are compared against other incidents for
similarities and differences. For example, the psychological and behavioral reaction of
one man after being told he has prostate cancer is contrasted against the reactions of
others. Some may react with shock and denial and put off the task of gathering
information necessary to make an informed decision about treatment. Others may see
their diagnosis as simply yet another obstacle to be overcome, and immediately jump into
an information-gathering mode and decide quickly on a treatment strategy.
Making constant comparisons also helps the researcher avoid personal bias as one
challenges concepts with new data. This assists the researcher to achieve greater
precision and consistency in terms of grouping similar phenomena together. Patterns of
behavior are identified, and the constant comparison results in theory that describes
processes or stages of a certain phenomena. Hypotheses about the relationships among
categories are created, developed, and verified as often as possible during the research
process (Corbin & Strauss, 1990). Using constant comparison, representativeness of
concepts, not people, is a crucial aspect of grounded theory as people's actions or
attitudes allow the conceptualization of theory regarding behavior.
Another principle of interviewing and grounded theory includes the writing of self-
reflexive and theoretical memos. These are systematic running accounts of what is being
seen or heard and help the researcher keep track of categories, themes, and hypotheses
that evolve throughout the research process. These memos are not just a log of ideas, but
are crucial in the formulation and revision of theory, in addition to tracking and being
able to understand the researcher's personal reaction and feelings to what he or she
experiences (Caroleo, 2002).
Given the nature of this research project, a peer-debriefing model was used,
wherein committee members provided supervision to ensure that the qualitative
techniques being used were adequate, and that employed methodology addressed the
important issues and questions being studied. Collaboration such as this helped guard
against bias, and often led to new insight about the phenomenon being described, thereby
enhancing validity, or "theoretical sensitivity" (Corbin & Strauss, 1990, p. 11).
Since psychosocial adaptation to prostate cancer and the role of leisure has not been
fully explored, it was believed a qualitative grounded theory approach would result in the
identification of primary phenomena, related categories, and the creation of substantive
theory. Theory is labeled substantive when it is developed from a specific area of inquiry,
which over time may lead to further analysis and revision of existing, more formalized
theories (Glaser & Strauss, 1967).
Selection of Participants
Grounded theory incorporates sampling based on theoretical assumptions. This
means that selection of participants is not a matter of reaching a certain number of
participants for statistical significance, but of understanding the concepts, dimensions,
and variations that emerge during investigation of a certain condition. The terms
purposeful sampling and theoretical sampling are often used interchangeably (Lincoln &
Purposeful and Theoretical Sampling
Patton (1990) stated that the power of purposeful sampling results from the
selection and in-depth study of individuals who have been identified as having had the
experiences that are of central importance to the research. Strauss and Corbin (1998)
defined theoretical sampling as "sampling on the basis of emerging concepts, with the
aim being to explore the dimensional range or varied conditions along which the
properties of concepts vary" (p. 73). In an earlier text, Strauss and Corbin (1990) stated
the aim of theoretical sampling was to "sample events, incidents, and so forth, that are
indicative of categories, their properties, and dimensions, so that you can develop and
conceptually relate them" (p. 177).
Due to the rich nature of the stories of the fourteen older men with prostate cancer
who were participants in this present study, the actual sample size should not be
considered small. In theoretical sampling, the actual number of cases studied is relatively
unimportant. What is important is the ability of the researcher to extract the potential of
each participant's story case to assist in developing theoretical insights pertaining to the
area of social life being explored. Theoretical sampling was employed to ensure that men
with a wide variety of experiences (i.e., based primarily on the type of treatment received,
age, retirement status, and marital status) were interviewed. This sampling method is
based on the idea that known, suspected, or reported conditions (e.g., side effects
associated with prostate cancer, uncertainty over treatment options, or possible isolation
due to incontinence) are used to identify and select topics or areas for further review (A
Strauss & Corbin, 1998).
A snowball sampling technique was incorporated into the study design protocol.
Snowball sampling involves asking participants already interviewed for information
needed to locate other individuals within the same population (Babbie, 1997). Screening
of men referred using this method, consistent with theoretical sampling, was done to
interview men who were believed could add critical insight about identified categories
and themes. For example, theoretical sampling led to interviews of several Black men
toward the end of the study as an attempt to capture aspects of racial and cultural
differences that might exist. The final participant selected was interviewed primarily
because of his involvement with Man-to-Man groups (described below) and more
conceptual density was thought to be needed to understand the dynamics involved within
Approval to conduct this research study was obtained from the Institutional Review
Board (IRB-02: UF Campus/Non-Medical) at the University of Florida. Potential
participants were allowed to contribute after the study had been explained to them, and
they were made aware that involvement was strictly voluntary. It was also stated that
their participation would not affect any health care they were receiving at the time, nor
would it impact their relationship with the Man-to-Man group.
Before being interviewed, each potential participant was given a consent form that
described: (a) the purpose of the study, (b) what participants were being asked to do, (c)
the expected time required, (d) potential risks and benefits, (e) confidentiality and
compensation information (there was no monetary compensation provided), and (f)
statements re-affirming that participation was voluntary and that the participant could
withdraw at any time or refuse to answer any question without consequence. Each
potential participant was given time to thoroughly read the consent form, and the
opportunity to ask questions or address concerns was provided. Terminology within the
consent form was geared so that it would be understandable.
Potential Risks and Benefits
There were no anticipated risks associated with participation in this study. Potential
benefits were listed for the participant as the possibility of receiving some psychological
or emotional benefit from talking about difficult issues associated with prostate cancer
and treatment, in addition to gaining insight into how they have adapted and what the role
of leisure is in their lives. Participants were told they could request a copy of the final
results once the study was completed.
Each participant was given the assurance that confidentiality would be maintained
throughout the study, and that his name would not be associated with any information he
provided. Each participant was given a code number, and code names were assigned and
used within all transcripts and reports. Names used to represent study participants within
this manuscript are pseudonyms. Pseudonyms were assigned chronologically and
alphabetically. For example, 'Alan' was the first man interviewed, 'Brian' the second.
The audiotaped interviews and printed transcripts were kept in a locked file cabinet,
accessible only to the researcher and supervisory committee members. These tapes were
then magnetically erased at the completion of the study.
Potential participants for this study were recruited through Man-to-Man discussion
groups in two cities in the southeastern United States. These monthly groups, which are
sponsored by the American Cancer Society, are designed to help men cope with prostate
cancer through community-based education, and often have guest speakers and
opportunities for participants to discuss information about their condition, treatment
experiences, side effects, coping, and other relevant topics. The present study was
explained to the facilitator of each Man-to-Man group, and permission was obtained to
attend and distribute introductory flyers (see Appendix A) at a meeting. Typically, the
researcher was able to attend the meeting and give an overview of the study, and group
members were encouraged to ask questions if further clarification was needed.
Those who indicated their interest in participating (either to the researcher, if
present, or to the group facilitator) were contacted later by phone and provided with a full
explanation of the research study. The sole eligibility criteria for men in this study was
that the man had been diagnosed with or treated for prostate cancer within the past five
years. Men were excluded if they were feeling too ill or fatigued to physically cope with
the interview process. Once eligibility was ascertained and the man verbally consented to
participate, a face-to-face interview was arranged for a mutually agreeable time and
location. In most instances, this occurred at the participant's home.
To ascertain the appropriateness and effectiveness of this methodology to answer
research questions and explore issues related to older men and prostate cancer, inclusive
of psychosocial adaptation and leisure topics, a pilot study was conducted. This pilot
study consisted of interviewing, transcribing, and analyzing data from six men recruited
from local Man-to-Man discussion groups. These six men were carefully selected based
on the determination that, as a group, their ages, cultural backgrounds, and treatment
experiences constituted a diverse range of anticipated topics.
Information obtained from the pilot study assisted in the formation of the semi-
structured interview guide used for the remainder of dissertation research study. This
pilot data helped identify initial categories as part of initial coding. Several of the men
within this pilot study were interviewed a second time to provide both the participant and
researcher an opportunity to address topics brought up by later pilot-study participants in
an effort to compare experiences and further develop the semi-structured interview guide.
Data and interpretations from this pilot study were shared with supervisory committee
members as part of the peer debriefing process. Pilot study findings were also presented
at a regional cancer conference to solicit feedback as to whether or not lines of inquiry
were sufficient to capture the full experience of men with prostate cancer (Howard,
This pilot study was valuable in that it provided the researcher with the ability to
determine the effectiveness of the interview protocol, in addition to being able to judge
how clear and appropriate the interview questions were, along with practical aspects of
the interview process. The protocol established during this pilot study was replicated in
the dissertation study, and data from the pilot study was incorporated into the larger
Interview Process and Data Collection
Participants were interviewed at a location of their choosing, as long as it provided
a semi-private atmosphere and access to amenities. Having restrooms nearby was
important since a common side-effect of prostate cancer treatment is incontinence. A
consent form (see Appendix B) was provided and reviewed thoroughly with the
participant before obtaining their signature. A copy of the consent form was given to each
participant for their records. A semi-structured interview guide (see Appendix C) was
developed from the data obtained from the pilot study, existing literature on men's
quality of life following prostate cancer diagnosis and treatment, and experiences of the
researcher. Questions for the interview guide were designed to enhance the development
of evolving theory (A Strauss & Corbin, 1998). The following questions or lines of
inquiry were established for this research:
1. Tell me a little about your life before having prostate cancer. Where were you born
and raised? Education? Vocation? Significant relationships?
2. What does quality of life mean to you?
3. What does being a man, or the term masculinity, mean to you?
4. How do you define the term leisure? What does leisure mean to you?
5. Share with me your experience of having been diagnosed with and treated for
6. What impact did cancer have on your quality of life and/or leisure, and vice versa?
7. How has your perception of yourself been affected by having had prostate cancer?
The items in the interview guide, and the order in which they were presented, were
intended to encourage the participant to openly describe his experiences with prostate
cancer and the personal meaning attributed to those experiences. Active participation by
both the researcher and participant proved necessary to facilitate an open dialogue and
sharing of experience. The interview guide, however, was only intended to steer the
discussion, as the interview was presented as an opportunity for the participant to "tell his
story" and elaborate on his experience in his own words (Strauss & Corbin, 1998).
Probes underlying each primary question of the semi-structured interview were
created to supplement the information elicited from each participant by encouraging
greater introspection and a deeper level of meaning and interpretation. Possible probes
were used during interviews. For example, after asking, "What does the term leisure
mean to you?" follow-up questions such as, "What types of leisure or recreation activities
have you enjoyed throughout your life?" or "What made those activities enjoyable or
personally satisfying?" or "What changes in your leisure, if any, did you experience as a
result of being diagnosed or treated for prostate cancer?" were asked. The use of these
probes (see Appendix C), along with "pumps" (verbal "uh-huh" or "okay," visual
gestures), phrases such as, "So you mean that...?" or "Share with me more what that was
like..." and/or the intentional use of silence, were used as appropriate. Interviews lasted,
on average, about 70 minutes, and were audio-taped using a Panasonic micro-cassette
recorder. An additional recorder of the same brand was used as backup, in case of
equipment failure (which, on one occasion, did occur). Immediately following the
interview, personal notes and reflections on theoretical and methodological issues were
recorded, and these notes served as the basis for later journal entries that elaborated on
ideas that were discussed in the interview, identified concepts that emerged, and included
suggestions for further elaboration and comparison to interviews both past and future.
Because these interviews were semi-structured, yet open for men to tell their stories
in their own words, some variation of participant responses was both expected and
experienced. This allowed the researcher to identify and probe more deeply around points
of specific interest to develop conceptual density and thick description. Conceptual
density refers to the data's explanatory power (Patton, 2002) and is sought to produce
findings that are both understandable and meaningful. Thick description generates
empathetic and experimental understanding by including a lot of detail and many direct
quotations. This allows a better understanding of all the possible meanings within the
data (Denzin & Lincoln, 1994).
Interviews were transcribed verbatim by the researcher. The decision to end
recruitment of participants was based on saturation of existing categories, meaning
phenomena were thoroughly explored and conceptual density obtained (Corbin &
Strauss, 1990). Saturation of a category is described as occurring when "no new
information seems to emerge during coding, that is, when no new properties, dimensions,
conditions, actions/interactions, or consequences are seen in the data" (Strauss & Corbin,
1998, p. 136). According to Lincoln and Guba (1985), "redundancy of information"
(saturation) typically appears with a sample size of twelve. In this research, fourteen
information-rich cases were obtained. Redundancy of information was found early in the
sampling, and themes within men's stories were more easily recognized for their many
similarities, rather than for dissimilarities.
Other sources for data collection and/or verification existed. Strauss and Corbin
(1990) suggested that "letters, biographies, diaries, reports, videotapes, newspapers, and a
variety of other materials ... be used as primary data" (p. 55). These sources of
information can be used to cross-check and supplement interviews. For example,
similarities and differences between the data and emerging themes from this study were
compared against information or reports within "documentary evidence." Numerous
accounts of individuals being diagnosed and treated for prostate cancer are available in
electronic and print media. Many books are available providing medical advice and
autobiographical information. Video presentations, such as No Big Deal!, describe men's
experience with prostate cancer, and several celebrities have appeared on TV and in
videos discussing issues related to prostate cancer.
Furthermore, invitations to give presentations for the local meetings of the
American Cancer Society afforded me opportunities to network with other educators,
community advocates, and most importantly, additional men with prostate cancer.
Occasional attendance at Man-to-Man meetings gave me further opportunities to hear
men tell their stories in a setting where many feel welcome to open up, share concerns,
and are supported in their challenges.
Coinciding with my immersion into the data, employment as a research assistant on
a federally-funded project studying the efficacy of dyadic social support allowed nearly
daily contact with men who had prostate cancer. Though my contact with them was
structured and often restrained due to adherence to a different research protocol, issues
and topics germane to my own research efforts were plentiful. These additional sources
of information and experiences occurred parallel to my own research study, and may be
considered as triangulation, a term used to describe the verification and validation of
qualitative analysis through combined multiple data sources (Patton, 1990).
Table 2 summarizes the demographic data of the participants in this study. A total
of fourteen men (N=14) were interviewed for the study. The ages of these men ranged
from 54 to 87, with a mean age of 70.3 years. Most of the men in the study received
varied treatment combinations for their prostate cancer. Five men had undergone a
radical prostatectomy (surgical removal of the prostate) as the primary method of
treatment. Two of these men later had radiation, and one of these two also received
brachytherapy (implantation of tiny radio-active pellets within the prostate or area of the
prostate capsule). Eight participants received radiation therapy, with four of these men
also receiving brachytherapy. Of the fourteen participants, four men reported having
received hormones (typically in the form of injections such as Lupron) to reduce the size
of the prostate or to curtail testosterone, upon which prostate cancer feeds. One man had
adopted the expectant therapy or "watchful waiting" approach, but stated that he was
anticipating beginning hormone treatments to lower his PSA scores.
The mean number of years that had passed from the time of initial diagnosis of
prostate cancer to the time of his interview was 4.1. Nine men had been diagnosed and
treated within the past four years, with two of those nine having undergone treatment
procedures (one radiation, one surgery) within six months of being interviewed. Five of
the men had been diagnosed at least six years before being interviewed (longest survival
was eight years).
Nine of the men who participated in the study were White. Four were Black, and
one was Hispanic. Two of the Black men were born outside the United States, but
reported living the vast majority of the lives within this country. Eleven of the men were
married, while one was widowed, one was single and had never married, and one was
separated and in the midst of divorce proceedings. With the exception of the single man,
all reported being fathers. Excluding this single man with no children, and one participant
who reported having ten children, the average number of children for the remaining
twelve men was 2.5. As for education, four men reported receiving graduate degrees,
three were college graduates, five had attended some college or completed a technical
program, one was a high school graduate, and the remaining man had a partial high
Eleven participants indicated they were retired, one was working part-time, and two
were employed full-time at the time of the interview. Of those who were retired (for
whom data was available), the average age of retirement was 62.0. An average of 10.7
years had passed since retirement. Reported vocations for these participants included the
fields of education (3), ecclesiastical (3), sales/marketing (2), personnel management (2),
economics (1), telecommunications (1), electrical engineering (1), and building
maintenance (1). When asked how they viewed themselves in terms of socioeconomic
status, two reported being below-average, six as average, and six stated seeing
themselves as above-average.
Table 2 Frequency Distributions of Selected Demographic Variables
Age (mean = 70.3)
50-59 1 7.1%
60 69 7 50.0%
70 79 4 28.6%
80 89 2 14.3%
Married 11 78.6%
Single, never married 1 7.1%
Widowed 1 7.1%
Separated 1 7.1%
White 9 64.3%
Black 4 28.6%
Hispanic 1 7.1%
Retired 11 78.6%
Employed full-time 2 14.3%
Employed part-time 1 7.1%
Partial high school education 1 7.1%
High school graduate 1 7.1%
Some college/technical school 5 35.7%
College graduate 3 21.4%
Earned graduate degree 4 28.6%
Radical prostatectomy 5 35.7%
Radiation 8 57.1%
Watchful waiting 1 7.1%
Time Since Diagnosis (mean =4.1 years)
0 -1 year 2 14.3%
2 -3 years 3 21.4%
4 5 years 4 28.6%
6 7 years 4 28.6%
8 9 years 1 7.1%
Since 1994 (the earliest year that a man in this present study had been diagnosed
with prostate cancer), numerous historical events, whether they be political, social, or
technological, have occurred that potentially impacted the lives of men in this study.
World events such as the tragedy of September 11th, the war against Iraq, and heightened
concerns about terrorism, affect people in different ways. Living in Florida often means
dealing with natural disasters, or the threat of them (e.g., Hurricane Andrew in 1992,
Hurricane Floyd in 1999). These types of events may impact the lives of men, their
perspectives of themselves and the world around them, and their attitudes toward life in
general. Significant to daily life, advances in media technology (e.g., the Internet), and
medical technology (e.g., pharmaceutical and treatment technologies) have greatly
influenced people's awareness and access to information and services, thus potentially
impacting their lifestyles.
Within the realm of leisure, the rise in availability of fitness centers and sports
events, such as the national football championship of the Florida Gators in 1996 or the
death of race car driver Dale Earnhart in 2001, are examples of events that potentially
impacted the lives of residents living this area. Factors such as the climate of north
central Florida with its hot and humid summers, occasional shark attacks at Florida
beaches (with more or less media coverage), and the University of Florida and its large
student population from August through April, can impact what, when, and where people
do leisure in their daily lives. Depending on the time of year that a particular participant
was interviewed, his perception of leisure may have been affected by these factors.
Within this present study, these variables were not specifically asked about, and, given
the nature of the research design of the present study, they are not controlled for.
However, it is important for the reader to realize that just as I, within the role of
researcher-as-instrument, feel compelled to disclose significant aspects of myself and my
experiences as a reflection of my life perspective and potential biases, the participants
have also had events occur within their environment that have potentially affected their
perspective and attitudes.
Analysis of the Data
A qualitative computer software program (QSR NVivo) was used to manage, code,
and systematically analyze the data. Specific procedures used during analysis included
three basic types of coding: open, axial, and selective. Open coding resulted in the
formation of categories based on discrete units (e.g., paragraphs, sentences, words), with
each unit being given a label that represents the phenomenon being observed. For
example, words such as "therapeutic," "restful," and "enjoy" were used by Brian (see
note below) when describing having played the piano. Each word carries with it its own
conceptual relevance and meaning.
In open coding, events, actions, and interactions that are described by participants
are identified and compared with events, actions, and interactions of others to: (a)
develop a comprehensive list of initial themes or categories, and (b) determine
similarities and differences. The properties of these events, actions, or interactions were
examined in terms of both duration (long or short) and manner (type and intensity) of the
experience (Strauss & Corbin, 1998). Each transcript was reviewed at least two times in
order to identify key words and phrases indicative of meaningful experiences for men
with prostate cancer. Transcripts were examined for similarities and differences, themes
and patterns, and additional concepts emerged and were identified. This type of analysis
was done following each interview and became the basis for further theoretical sampling.
The analysis stimulated questions that guided the researcher's work as additional
participants were interviewed (Corbin & Strauss, 1990; Creswell, 1998).
Axial coding consisted of exploring the interrelationship between and within
categories. In this phase of analysis, a coding paradigm or "theoretical model," that
visually illustrated the interrelationship between categories of information was created.
Using the terms mentioned above regarding Brian and his past experience of playing the
piano, these smaller units can be set within a larger concept, such as leisure satisfaction.
A comparison of this category, or sub-categories, with other comments he made about
leisure activity, or what other men said about leisure, helps to increase our understanding
about even larger phenomenon. For example, questions can be asked in terms of other
leisure or social contexts, or in looking at other activities that he said he participated in
(e.g., using the computer), and whether or not he or other men used the same descriptive
words: "therapeutic," "restful," or "enjoy" as descriptors. Analysis can also be done to
see if these same words are used by other men when describing leisure activity, or if
these descriptor words convey a decidedly different meaning or intensity. In grounded
theory, this is sometimes referred to as a conditional matrix (Creswell, 1998). Axial
coding is also a process where the researcher continues to alternately collect and analyze
data to eliminate or fill in gaps in the developing theory (Corbin & Strauss, 1990).
The final phase of analysis, termed selective coding, culminated in the
identification of a principal theme that integrated all other categories from the earlier
steps in the process (Creswell, 1998). Corbin and Strauss (1990) defined this phase as
"the process by which all categories are unified around a 'core' category" (p. 14). Strauss
and Corbin (1990) stated that selective coding is the process of "selecting the core
category, systematically relating it to other categories, validating those relationships, and
filling in categories that need further refinement and development" (p. 116). The term
"supra-concept," often used in discussing sensitizing concepts, applies to concepts that
encompass a wider body of empirical data (van den Hoonaard, 1997), much like the
process engaged in when conducting selective coding around a central theme or
Strauss (1987) provided the following criteria for choosing a central category:
1. All other categories can be related to it.
2. Themes from the central category must appear frequently in the data.
3. Explanation used in describing the relationship between categories is logical and
consistent. There is no forcing of the data.
4. The name or phrase used to describe the central category should be sufficiently
abstract so as to allow further research, and lead to development of more general
5. The central category is analytically refined and integrated, thus supporting theory to
grow in depth and explanatory power.
6. Concepts within the central category are able to explain and account for variation,
as well as the main point made by the data (p. 36).
Selection of a central category was done when enough coding had taken place so
that the researcher realized a clear perception of a specific category or conceptual
phenomena that integrated the entire analytical process (Corbin & Strauss, 1990).
Thereby, the emerging theoretical framework captured the essential message of the
research in such a way that individual concepts, along with their meanings and
relationships with other concepts, are interwoven into an "explanatory theory that closely
approximates the reality that it represents" (Corbin & Strauss, 1990, p. 57).
As illustration, the men interviewed in this study could all be classified as
survivors, and several identified themselves as such. Each provided examples or thoughts
symbolic of having moved past the cancer episode, and having moved on with life. Many
shared, each with subtle or not-so-subtle indications of having been changed or having
developed or having personal characteristics strengthened, in part, due to adaptation
experienced as part of dealing with cancer.
Standards for the Quality of Conclusions
This study, like all other qualitative inquiries, took place in the real world. The
study itself, as well as results of this study, can have consequences in people's lives. For
both quantitative and qualitative researchers, the issue of "trustworthiness" and the
quality of data is crucial. To produce and report findings from this present study that are
worthwhile, "standards for the quality of conclusions" were identified before beginning
data collection (Miles & Huberman, 1994). These standards include: (a) objectivity and
confirmability; (b) reliability, dependability, and auditability; (c) internal validity,
credibility, and authenticity; (d) external validity, transferability, and fittingness; and (e)
utilization, application, and action orientation.
Objectivity/confirmability acknowledges inevitable researcher biases and promotes
self-awareness to enhance neutrality and freedom so that conclusions rely upon those
being interviewed and conditions of the inquiry, not the inquirer. Efforts were made to
establish and maintain a record of the study's methods and procedures, and competing
hypotheses or conclusions were thoroughly considered. Key to this process were repeated
meetings with committee members (most often individually or in dyads) who, acting in
the capacity of peer-debriefers, raised and discussed questions about the creation and
formation of conceptual categories and the meaning given to interpretation of
relationships between and within concepts. Likewise, negative evidence or rival
explanations were listed. As categories were generated, a process referred to as
"verification mode" was engaged in to challenge my hypotheses by actively seeking
(constant comparison) for negative instances of the phenomenon or other plausible
explanations (Miles & Huberman, 1994). Here again, the use of peer debriefers facilitated
Objectivity, though oft-times elusive, was sought as I attempted to check for
personal biases on a regular basis. Though I became invested both in the individuals and
in my study of them, I constantly reminded myself to stay open to the possibility of
different findings or possibilities. Part of this involved being self-reflexive, and I adhered
to recording personal reactions to the process in a journal, as well as my feelings about
interpretations of participants' experiences.
Reliability/dependability/auditability infers that the process of this study will be
consistent and stable across time. Data were collected across a wide range of situations,
conditions, and participants as suggested by the research questions, literature review, and
constant comparison and analysis. The use of qualitative software helped in checking the
accuracy of coding data and was made available for auditing by supervisory committee
members (Miles & Huberman, 1994).
Internal validity/credibility/authenticity were determined by asking questions such
as, "Do the findings make sense?" "Are the results credible to the people being studied?"
and "Do the findings represent an 'authentic portrait' of what is being explored?"
Descriptions of accounts were written in ways that were rich and meaningful to the
reader, in addition to being comprehensive, yet respectful, of the context in which they
occurred. Data presented were linked to categories of pre-existing or emerging theory,
and conflicting areas were identified.
External validity/transferability/fittingness refers to knowing whether the
conclusions drawn by the present study have any larger significance, and if they are
transferable to other contexts or are generalizable to other settings or populations.
Lincoln and Guba (1985) described the concept of transferability as one where the
researcher "can provide only the thick description necessary to enable someone interested
in making a transfer to reach a conclusion" (p. 316). To ensure external validity,
transferability, and fittingness, efforts were made to sample a theoretically diverse group
of participants. For example, greater understanding of how older men adapt and make
different choices with their leisure time may be applicable to older men facing similar
challenges following other illnesses or threats to health. The final chapter of this
document provides suggestions for additional settings where findings could be tested
further and how replication can occur effectively.
Principles underlying utilization/application/action orientation serve to promote
and stimulate working hypotheses, and do so at an appropriate level of usable knowledge
that is "intellectually and physically accessible to potential users" (Miles & Huberman,
1994, p. 280). Findings are presented to have a motivational effect that will lead to
specific action (e.g., further research or the development of interventions) by the
researcher or others which may help to address identified challenges faced by men with
prostate cancer (Lincoln, 1990). Adherence to these standards helped guide the
qualitative analysis and enhanced the probability of a meaningful outcome for this
present research (Miles & Huberman, 1994).
Two incidents occurred during data collection that are particularly note-worthy.
Each embodied, for a brief time in the interview process, moments of reflection on the
methodological procedures outlined in the research protocol. The first involved a man
who, during the early stages of the interview, expressed his belief that he was a
transgendered person. The term transgendered is defined as "exhibiting the appearance
and behavioral characteristics of the opposite sex" (Merriam-Webster, 2003). The second
instance occurred when two men, who had been scheduled for interviews at different
times, showed up on the same day, at the same time and location, asking to be
Issues of sexual identity were not an identified focus of the present study, although
sexuality was certainly expected to emerge since the semi-structured interview guide
included questions related to masculinity, and erectile dysfunction is a common side
effect of prostate cancer treatment. Harold's disclosure of himself as a transgendered
man, had this been quantitative study, would have caused him to be classified as an
outlier, defined as "an unusual, atypical, data point one that stands out from the rest of
the data" (Pedhazur & Schmelkin, 1991, p. 398).
When Harold shared this perception of himself, one proven to be significant as he
shared experiences of his past and present life situation, it caused me moments of
questioning whether his interview should be conducted, or thereafter analyzed, any
differently than the rest. It was decided, during the interview process and later during
analysis, that data collected from him should be included since issues of sexual identity
(along with issues of sexual orientation) are independent of the experience of being
diagnosed and treated for prostate cancer. Within our society, there are numerous
individuals outside the context of those who consider themselves heterosexual males.
This instance served to illustrate the fact that the unique challenges and life experiences
encountered by transgendered men, or bi-sexual or homosexual men, are real and deserve
the attention of research and the health care community.
The second instance of methodological variability involved Leroy and Martin. My
experience of interviewing these two men brought with it numerous questions, and was
an invaluable learning experience. As mentioned earlier, Leroy and Martin, who lived
within the same town and had been recruited from the same Man-to-Man meeting, had
been scheduled for interviews at different times. However, Martin, whose appointment
was scheduled for a later time, showed up at the home of Leroy on the day and time of
Leroy's scheduled interview. Perplexed, I tried to ask if meeting separately would be
possible, but from their response it was readily apparent that they both desired to be
present. Sixteen years separated the ages of these men, with Leroy being older, and it was
mentioned that Leroy's now deceased wife had been Martin's first-grade teacher. It may
also be important to note that these men were Black, had lived in the South their entire
lives, and Leroy had earlier shared an experience of having his college years cut short
when an uncle and a friend of his uncle's were lynched. Leroy stated that his father
mortgaged his home to bring the body of his brother home. Leroy said that several of his
father's other brothers also returned home due to this incident.
Interviewing two men at the same time undoubtedly influenced the dynamics of the
experience, and the openness with which each shared information. It is impossible to
speculate on how the experience would have been different had they been interviewed
separately, and how that impacted the nature of the data that were collected. Near the end
of the interview, however, they revealed why they chose to be together when interviewed.
At one point in our discussion, Martin was sharing his experience with the local
Man-to-Man group. Leroy interrupted Martin, saying, "Let me make a confession to
him." Martin said, "Alright," and we shared a laugh, I being curious about what Leroy
was going to say. He stated:
Okay. You called me, and told me who you are, and what you wanted to come for.
And I thought about it, and just yesterday it occurred to me, 'You receive a call, from a
man you don't even know. And, you don't have time to ask for doctors if they know him.
Don't you think you've been a little hasty in telling him to come to your house?' [brief,
mutual laughter, and I commented, "...and opening your door to me"]
So, I called [Martin], and [Martin] said...[I interjected, "Who got the same call..."]
Well, you mind if I come up to your house and we'll see him together? [Shared laughter,
spoke to Martin] I had to make that confession to him. You know, there is a lot of
carrying on out there. [I then stated, "Yeah, I am a stranger, or at least I was awhile ago."
Martin then made his own "confession" to me, stating "When you told me, and said, 'I'll
come over to your house,' I said to myself, I said now, I don't know ... [laughing] I said,
I'll meet you at the hospital. And then [Leroy] called, and I said, I'll come over to your
Clarke (2000) wrote about the complexities of what he termed "sociological
interview methodology," including racial considerations such as the one I encountered -
with myself being White, and the interviewees being Black. Clarke (2000) concluded that
through experiences foreign and unfamiliar to the interviewer, the interview material can
become even more enriching and valuable. For this to occur, however, it required me to
revisit my own biases and assumptions, thus allowing for a clearer interpretation of
potential meanings (Strauss & Corbin, 1998). In essence, to meet and talk with a man
who had actually lived through an experience of a family member being lynched, and that
both were apprehensive about me coming to their home was a new experience. I had to
ask myself, 'Do I know, or just assume that Leroy's paternal uncle was killed by White
men; and was their apprehension about me coming to their homes due, in some part, to
cultural or racial differences?' Regardless of the answer to these questions, this situation
brought with it some real feelings that I previously had not experienced through the
simple reading of literature.
The use of a qualitative research design, incorporating the procedures described
herein, was anticipated to provide additional information and knowledge about men's
psychosocial adaptation following prostate cancer and treatment. Prior to writing the
findings of this study, a final theoretical framework was established. This existed in the
form of journal entries, participant quotations and transcript excerpts, and visual
diagrams of categories and their linkages all having been cross-checked against the
data. Communication between myself and committee members as peer debriefers helped
discover potential discrepancies or biases I may have made in the analysis or in the way
themes were constructed. The final manuscript was then written by weaving together the
concepts and pertinent themes with actual participant quotes, along with my own
INTRODUCTION TO FINDINGS
Men diagnosed with prostate cancer and treated for the disease reported facing
situations replete with decisions that most acknowledged could impact their well-being
and quality of life. Treatments were decided upon and received, side effects were
experienced and men described efforts made to carry on with their lives. Many
acknowledged having been required to dramatically change their way of living that
their experience with prostate cancer impacted attitudes and behaviors. Some, however,
spoke about life going on pretty much as it had before. These men varied in terms of age,
race, education level, vocational preference, age at diagnosis, treatments) selected and
side effects encountered. How men adapted since diagnosis and treatment for prostate
cancer in order to satisfactorily live their lives also varied. Some men undoubtedly, as
findings suggest, argued they never lost this foothold on life.
Numerous personal, interpersonal, and environmental factors the number and
nature of which exceeds the scope of this analysis have influenced, and continue to
influence, these men's journeys through life. It is important to note that the interview
process and the questions that were asked imposed a certain amount of linearity upon the
description of their accounts. However, these men's lives represent a dynamic journey
and process without any sort of pre-fabrication. As will be seen, these men's lives and
their efforts to meet life's challenges and achieve personal goals continue.
Before beginning interviews as part of this study, research questions were
formulated to serve as the foundation of its design. A review of those questions will help
the reader revisit the origin of this study before an exploration and discussion of what
was discovered. The three research questions were identified as:
* What are the key psychosocial variables and conditions that impact the process of
coping and adjustment related to leisure following prostate cancer diagnosis or
* What function does leisure play in the lives of men with prostate cancer, and how
does the experience with prostate cancer interact with leisure attitudes, choices, and
* What role does leisure play in potential changes or personal development of men
who are survivors of prostate cancer?
These questions led to the design of the study, which, as described in Chapter 3,
was to conduct semi-structured interviews and analyze transcribed data, using techniques
of constant comparison. The aim was to then develop grounded theory (ideas about "what
is going on here?" stemming from comparison of participant comments) that will help in
better understanding the impact of prostate cancer and its treatment on the quality of life
and leisure experience of older men.
Men in this study shared attitudes, opinions, and behaviors consistent with the
experience of coping and adaptation in the wake of being treated for prostate cancer.
While attitudes, opinions, and behaviors varied among men, all were consistent with an
individual seeking to make the best of a situation in the best way he knew how at the
time. While these findings are specific to the men within this study and, based on the
nature of the research, cannot be automatically generalized to any larger population, the
knowledge and information stemming from this research may be carefully applied and
contrasted to other men facing similar experiences. Figure 1 below provides an overview
of the major conditions, phenomenon, properties, and dimensions identified as part of the
processes engaged in by men.
Ie aisuc P ation
Figure 1 Quality of Life, Leisure, and Coping and Adaptation following Prostate
Narrative description of this model follows, beginning at the top left of the graphic
and moving in a counter-clockwise fashion. Primary themes such as quality of life and
leisure attitudes and behaviors are shown as components of older men's lives. Work and
retirement, roles and relationships, and health conditions are shown as conditions
exemplary of older men's life transitions. Likewise, as men's experience with prostate
cancer is an obvious focal point of this study, reaction to diagnosis and selecting and
receiving treatment are salient sub-themes that interact with data supportive of the
spouse's role for those men with a partner. Stemming from men's experience with
prostate cancer are categories of physical side effects and psychosocial side effects.
Coping and adaptation are shown to occur in response to those side effects, with leisure
participation viewed as a condition indicative of effective or ineffective coping or
adaptation. The results of coping and adaptation are then shown in relation to ever-
evolving perceptions of quality of life and one's leisure attitudes and behaviors as life
According to Strauss and Corbin (1998), the term condition means "sets of events
or happenings that create the situations, issues, and problems pertaining to a phenomenon
and, to a certain extent, explain why and how persons or groups respond in certain ways"
(p. 130). Phenomenon is a term used to answer the question, "What is going on here?"
(Strauss & Corbin, 1998) Several other terms are useful in understanding the process of
analysis, thereby helping to interpret the findings. Categories (themes) are developed
according to its specific properties and dimensions. Properties are "the general or
specific characteristics or attributes of a category," (p. 117), whereas dimensions
"represent the location of a property along a continuum or range" (p. 117). For example,
within the category of men's experience with prostate cancer are two properties, physical
side effects and psychosocial side effects. Within each of these properties lay dimensions
indicative of the severity of a problem or concern. Subsequent chapters offer description
of each main component of the model, along with an argument for its relationship with
other parts of the model, based on their properties and dimensions. Pertinent literature
reviewed before conducting interviews, in addition to scientific findings published up to
the time of writing this manuscript, is included as part of this discussion.
Identification of the Central Category
Later stages of axial coding (exploration of the interrelationship between and
within categories) and selective coding (identification of a principal theme), led to the
identification of the central category which integrates all other categories (A Strauss &
Corbin, 1998). The central category is an indicator or phenomenon representing a
synergy between coping and adaptation. Merriam-Webster (2003) defines the word cope
as meaning "to deal with and attempt to overcome problems and difficulties." Adaptation
is defined as "modification of an organism or its parts that make it more fit for existence
under the conditions of its environment" (Merriam-Webster, 2003). Coping and
adaptation to life's circumstances were seen in the choices and behaviors of men
interviewed. Coping and adaptation become properties of life and are instilled within
notions of quality of life, each with its own dimensions.
Coping and adaptation is considered the central category within this study, and was
so selected due to it congruence with the six criteria suggested by Strauss (1987). First,
each and every category shares a relationship with coping and adaptation. Second, themes
from the central category appeared frequently in the data. Other themes and sub-themes
are shown appearing sequentially before or after coping and adaptation chronologically
(time-wise), in addition to having shared interactions, direct and indirect. For example,
relationships with friends (social support) may potentially impact and enhance successful
coping and adaptation. The role or influence of a spouse is likely to have an even greater
influence. Additionally, the nature and degree (dimensions) of side effects serves as the
parameter determining the need or effort put into coping and adaptation.
For the third criterion, explanation found in the following pages offers description
that the relationship between categories has been done in a way that, for the reader, is
intended to be logical and consistent. The fourth criterion, naming the central category
coping and adaptation was done to allow abstract visualization of constructs, thus
supporting further research questions. The fifth criterion requires that the central category
be "analytically refined and integrated" (p. 36) to support the growth of additional theory
that is strengthened via greater depth and explanatory power. Finally, the sixth criterion
states that concepts within the central category illustrate the main point of the data, in
addition to being able to "explain and account for variation" (p. 36). As leisure attitudes
and behavior following prostate cancer and treatment is a central focal point of this study,
discussion of leisure participation serves well as a property of coping and adaptation.
Outline of the Report of Findings
This chapter offers an introduction to the findings and comprehensive examples of
data comprised in the next two chapters. Coding and categorization of data from
interview transcripts resulted in identification of key themes pertaining to quality of life.
Different perspectives regarding leisure were the focus of Chapter 5. Men's experience
with prostate cancer, from reaction to diagnosis to the process of selecting and receiving
treatment and coping with subsequent side-effects, has been documented in Chapter 6.
In Chapter 5, quality of life is explored as being a multi-faceted concept that was
regarded and described differently by participants. One representation of quality of life
was the filling of important roles (e.g., father, provider, or leader). Another parameter of
quality of life was the recognition of and respect for certain values and personal
characteristics (e.g., loyalty, fiscal security, or religious faith). One's relationship with a
spouse, friends, and family, along with enjoying good health, was yet another quality-of-
life perspective. Maintaining a certain level of activity and being productive was also
mentioned as important to older men. Other aspects of men's lives deemed of value were
notions of masculinity, how the sense of one's masculinity interfaced with sexuality, and
how men acted in a generative manner wherein they interacted with their posterity to
pass along valuable wisdom and traits. Leisure was also portrayed within Chapter 5 as a
concept with different meanings and can be interpreted as unique to person, place, and
situation. Leisure was illustrated as including components of: (a) time, (b) activity, (c)
participation and involvement in life experience, (d) leisure within a relationship context,
and (e) leisure as an antithesis to work. Other factors influencing leisure, such as the
motivation and meaning of leisure and potential constraining variables, were also
In Chapter 6, men in this study are shown to have experienced differences and
similarities as they engaged the health care system for treatment of prostate cancer. The
side effects of the treatment modalities were placed in two categories physical side
effects and psychosocial side effects. Physical side effects were differentiated as hot
flashes, breast growth and tenderness, pain and fatigue, incontinence, and erectile
dysfunction. Psychosocial and emotional side effects were documented as shock, denial,
anxiety, worry, anger, depression, isolation, and/or embarrassment. Men's comments
relative to the threat of reoccurrence were noted, as were thoughts about the role of
religion and spiritual involvement during their experience.
In summary, this chapter has provided an overview of the conceptual model,
selective coding as a process for the identification of the central category, and an outline
of information that follows in the next two chapters. The conceptualization provided
described the process whereby the lives of older men consist of, among other things,
views about quality of life and leisure's role in one's life. As older men experience life
transitions such as retirement and changes within family and interpersonal relationships,
health conditions (due to age or illness) serve to challenge and impact life. Being
diagnosed with prostate cancer, receiving treatment, and coping with side effects of a
physical or psychosocial nature were part of these men's experience. Men dealing with
prostate cancer cope with and attempt to make the best of their life situation. Though
modified or changed, leisure continues to be an important part of their lives. Experiences
had while coping with physical or psychosocial side effects, either successes or failures,
interacts with perceptions of quality of life and leisure's role within it.
OLDER MEN'S LIVES AND THE MANY FACES OF LEISURE
Defining Quality of Life
In the first chapter, quality of life was defined as individual response to physical,
mental, and social effects of illness that significantly influence the extent to which
personal satisfaction with life circumstances can be achieved (Bowling, 1997). When
asked the question, "What does quality of life mean to you?" study participants shared
perspectives that, in most instances, mirror what is found in present literature that exists
on the topic. Quality of life, for some men in the study, was based on family and
interpersonal relationships. Others incorporated the necessity and appreciation of having
good health or fiscal stability. For other men, quality of life meant still being active and
productive. Interpretation of the data resulted in the formation of five primary thematic
categories: (a) fulfillment of masculine roles, (b) personal values and characteristics, (c)
relationships with spouse and family, (d) appreciation of health, (e) productivity and
involvement in activity, and (f) other parameters of quality of life, including retirement
transition, notions of masculinity, masculinity and attitudes regarding sexuality, and
Fulfillment of Masculine Roles
Several men cited their belief that adhering to and acting in accordance with
particular roles was important to their sense of self and well-being -- to their quality of
life. At one point, Frank stated simply, "To be a man, being a man is a role." After a brief
interruption, he continued:
In some respects, manhood is a role that we play, you know, part of which certainly
is being a provider -- it's being a father, it's being a director, being a leader .... I
think that's the kind of noble traditional way of looking at it.
When asked if his spirituality influenced his perception of being a man, he replied:
Oh, definitely yes. Um, I mean, in the way, that I perceive, it is, God has placed us
in a role, you know. I am the spiritual head of my family. I also try to be a spiritual
head in the church -- I am a deacon. And as I said, to me, leadership and servitude
are really, the best leaders are the ones who serve.
Frank also cited the influence of his father, along with his experience with prostate
cancer, as important to his conceptualization of manhood. At one point in the interview, I
said to him, "When you were growing up, you mentioned doing sports...." He replied:
Yeah, I did. I did baseball, basketball, rugby, softball, soccer, those kind of sports --
the ones that went on at school. I had a chance to play in the Yankee organization
in baseball when I was about 17, and my father wouldn't let me. I cursed him, and
then [he laughs], I thanked him... I mean, I would have gone down to California or
something in the rookie league or some crazy place.
Leroy described similar feelings. When asked about what was important as a man,
he stated, "Being a role model. And, a man should be a leader." Jack made reference to
his role as husband, one that has evolved with time. He commented, "At this age, I, of
course, it is different now than 40 years ago, but at this age, being a man is treating your
wife with respect." He extended that sentiment to others by adding, "And your children.
And treating neighbors, friends, associates, with compassion."
Another man, Eric, spoke to being a father, where being a man and a father
embodied certain traits. He stated, "I've never had any doubts about my masculinity. I
like to think of myself as a gentle person, a sympathetic person, an understanding person.
I have tried to set a good example for my boys." Alan too, spoke of his posterity. He
described part of being a father was "letting my children know I'm proud of them."
Martin also spoke of being a father and the satisfaction found in "loyalty, and seeing your
children grow up." Charles, a father of two, mentioned that a primary objective for
himself as a man throughout the years was in "providing for my family."
Personal Values and Characteristics
Akin to simply being involved in activities was the notion that the quality of that
involvement was an important component of quality of life, almost as a manifestation of
one's personal values or inner characteristics. For many, their current appraisal of quality
of life may have been impacted by earlier experiences in their life. Norm stated, "I was a
child of the Depression, and that affected quality of life, too." Leroy shared that it was
important for a man to have certain traits. He stated, "A man should be responsible. A
man should be law-abiding."
Ken suggested that along with physical health, "fiscal security" was important to
his quality of life. Eric described himself as "just living like the average person: middle-
class, average middle-class." His comment, "I count my pennies," adds to the argument
that fiscal responsibility and material possessions likely factor into quality of life. Jack
I was raised very poor. I recall being hungry on occasion -- and had outdoor
plumbing until the age of 17. That did not sit well with me. Most of my friends
have a little higher standard of living, and it was tough for me, but I survived.
I reflected, "You appear to live a very comfortable life now...," to which Jack replied, "I
have been fortunate." He added even more clarity to his perspective by continuing:
Quality of life, I think, is doing the best you can with what you have. However, I
would prefer a higher quality of life than a lesser, but I am saying, well, the old
saying, if you have a lemon then make lemonade.
For some men, quality of life was not so much a state or an end, but the means or
method one uses as a guide for personal development and interaction with others. Norm
commented, "I think a lot of it. I think if a person is happy with his life, as it pertains to
Christ, Jesus Christ, that in itself is a major factor in quality of life -- in fact, I know it is."
This comment reflects the view of several men that, for many, personal religious views
were central to quality of life in general, and particularly in times of crisis or challenge.
More attention is given to spirituality and religiosity later in this manuscript.
Harold's life situation, and his experience with prostate cancer and treatment,
provided an opportunity to understand a unique, but not necessarily uncommon,
perspective that clearly impacted his perception of quality of life. Harold identified
himself as being a transgendered man. He explained that:
The atmosphere around me growing up was that men are not as good as women,
and the best person that you can be would be a woman. And so I couldn't be the
best person that I could be as a male .... As far back as I can remember, I've been
interested in being a woman, but I've never had attraction to a man. That's not the
way that transgender works. There are people with gay feelings, lesbian orientation,
or bisexual, but I'm in that other one, which is transgender.
Harold stated having "a value that is still part of me, if I ever am going to be the best that
I could be, before I die, somehow I will have to become a female." He also explained:
With the ambivalence that I have had, I have tried to forget about this desire to be a
woman, or the feeling of the need to be a woman. I tried to forget about it, I've
tried to extinguish it, I've tried to figure out what to do about it, and now I'm trying
to explore it, and celebrate it.
He was then asked if his exploration was something he did by himself, or if he had
involved other people or counselors. He answered:
I have been going to counselors and therapists, and talking about it for many
decades -- trying to deal with it -- and also marriage counseling about it. The
marriage counseling was almost always about the mental health problems that my
wife has, but it also involved this other aspect -- gender dysphoria, if you want to
call it that.
During an earlier part of the interview when Harold was first disclosing his feelings
of being transgendered, I made the comment that there are many people who choose to
undergo surgery and therapies to change their sex and Harold indicated he was aware of
that. When asked if he might consider such a course of action, he answered, "I have
fantasized about sex reassignment surgery -- there is a pull in that direction." Being a
transgendered man, Harold experiences life quite differently than the other men in the
study. When asked, "What does quality of life mean to you?" Harold replied:
Quality of life -- I think meaningfulness is an aspect of it, and morality is an aspect
of it. So fulfillment and meaningfulness I think are big aspects of it. The ethical and
moral aspect of it I think are part of quality of life.
I then made a comment about a person benefiting from there being meaning within
choices and activities, along with a value system, and Harold spoke, "Yeah, value system
is important. What you make of your life, a precious gift not to waste, but to be as fully
developed as you can and also to be moral and ethical in your treatment of other people."
I reflected, "So much of it involves relationships...," and Harold replied, "Oh yeah, your
relationships with your fellow man, woman, whatever."
To conclude this brief, yet in-depth look at Harold and his views about quality of
life, it needs to be mentioned that Harold elected radiation treatment for treatment of his
prostate cancer and, at the time of the interview, continued to receive hormone therapy.
In a later section of this chapter, the side effects of hormone treatment will be discussed,
one of which is something that most men dislike increased breast size or tenderness of
the nipples. Given what has been shared about Harold's perception of himself as
transgendered, and his desire to explore and celebrate his "interest in being a woman," his
answer to the question, "Has your definition or experience of quality of life changed due
to your experience with prostate cancer and treatment?" was simply, "Well, I'm happier
getting some breast enlargement." Though Harold's situation was unique within the
study, focus will not be given to his feelings of being transgendered within the rest of this
Relationships with Spouse and Family
Eight men cited aspects of family and relationships with others as key determinants
of quality of life. As Charles stated, "Family is quality of life." When probed, he
elaborated that quality of life to him meant having:
A happy family .. seeing your children do well, seeing your wife happy and in
good health, interacting with your neighbors. I tend to open up to neighbors, and
certainly the family. Family to me is all-important ... [and] I find children to me
are the most wonderful thing in the world.
The importance of relationships with family was stressed by Darren in his
statement that, "The thing that I enjoy most right now is my relationship with my family.
Money can't buy what I have." Norm concurred when sharing what he thought was most
important, "Your wife, your family ... good family, good kids, good grandkids, I have
all of that." For Jack, he saw quality of life as more than his own satisfaction with his
own relationship -- he felt it was important that others experience the same. He stated,
"Quality of life for me would be more fortunate people who have good family and good
Though not specifically probed for clarification, the use of the word good is
noteworthy because it seemed to reflect a stronger connection, a greater emotion, and
sense of pride. Being fortunate to have good family and good friends was not a unique
attribute of Jack's. Eric, when asked, "What other parts of your life do you really treasure
or value?" answered after nearly a minute had elapsed and tears had formed in his eyes.
The extended silence added to the heavy emotion with which he spoke, "I have had, I
think, one of the best relationships with my boys, as their father." Jack, who was
interviewed while sitting on the back porch of his home overlooking a large lake on a
beautiful, sunny day, noted, "Quality of life when you are young may be having a nice
car and going to a movie and having a girlfriend." For Norm, aging meant changes as
children grew and left the home. He stated that when his youngest child left home it
"opened up different avenues, different doors" where he and his spouse were able to
travel extensively and "thoroughly enjoyed the opportunity to do that without having
The roles played by spouses, other family members and friends were often talked
about by men sharing different aspects of their experience with prostate cancer.
Appreciation of Health
Health was mentioned by nine men as being a contributor to quality of life. This
seemed to be especially emphasized when there was an appreciation for good health, or
conversely when lamenting poorer health, either prostate cancer or some other health
conditions, including those attributed to the normal consequences of aging. Norm stated:
Well, you know, I lived until I was 75 years of age, and I can truthfully say that I
never had any debilitating illnesses. I have never been in the hospital, I have never
been admitted. So when you say, how was your quality of life? From a point of
view of a healthy life, well, superb! You know, to the point where I never even
thought about it.
For Norm, having good heath contributed to his quality of life inasmuch as it had
not prevented him from doing things both at work and in leisure that were important to
him. In a sense, poor health had not been a deterrence to him or his aspirations in life.
Frank also expressed feelings that good health, both physical and mental, was something
to cherish. When asked, "What are the major attributes of quality of life for you?" he
Strong body and strong mind -- that doesn't take much thought for me. I mean I
have always tried to combine these two things ... I don't mind living long, but as
long as I am living I want to have my faculties, physically and mentally ... I would
not like to not have my mind and be around .... I know that I will not be able to
continue the physical activities as I do now. I am blessed.
Another man made similar comments about the importance not only of physical
health, but mental health as well. Having just spoken about his attitudes at the time of his
retirement and his desire to play golf, Gus stated:
I thought at that time, and I'm not sure where I stand now, that I thought I could
endure anything except my mind going. Any kind of physical injury, even to the
point of being blind, but I always thought that was the thing I wanted to have more
than anything a strong mind.
At another level, facing the eventuality of declining health is a process that may
occur suddenly or may happen gradually with time. Ken spoke of physical health as
being a primary aspect of quality of life, but, with a smile on his face, acknowledged that
"It's going to hell with old age." Another man, Darren, when queried if he associated
health with quality of life, answered:
Yeah, yet I've always, up until the time that I was 65 years old, I didn't have
anything wrong .. the first twenty-something years that we lived here, I never
spent overnight in the hospital. I mean, I just didn't. And then, all of a sudden, it
came crowding in on me.
Darren went on to list several conditions and surgeries that had been completed for
his heart and his hands, but stated, "The Lord says He won't give you anything more than
you can handle." This statement, along with several others made by this man when
discussing other events in his life, made it clear that religiousness and spirituality played
a significant role in his outlook on life. This theme of religiousness and spirituality, as
shall be shown later, was prominent for many men as they discussed their experience of
dealing with prostate cancer.
Aging influences health. The aging process is experienced as a combination of
physical, emotional, and social growth and maturation. As a subjective construct, quality
of life means many things to different people. Based in qualitative methodology and
grounded theory, this research study aimed to determine how participants viewed quality
of life in general, aspects of aging and gender in relation to quality of life in order to
assist in the process of exploring the impact of prostate cancer on these men's lives.
Some men described aging as a process where activities and priorities change. Frank
stated that the aging process is one where certain things (i.e., physical capabilities) are
going to diminish within a "natural course of events," and that you "gotta make hay while
the sun shines." Therein, he suggests that people "don't take [anything] for granted and
enjoy it while you can."
Productivity and Involvement in Activity
Staying active was a principal theme in men's descriptions of quality of life. An
activity, per se, may be defined as executing a task or doing something specific, having
been motivated for a specific reason with a particular end or desired outcome in mind.
This concept of activity will be further defined and explored in Chapter Six as properties
and dimensions of particular themes are discussed. As Martin stated in a simple manner,
"I try to keep active." When asked why it was important for him to stay active, he
responded, "Well, you know, the more active I am, it is keeping me going ... the more
that I move around, the better I'll feel." His friend, Leroy, who was interviewed at the
same time, interjected a similar feeling stating, "I want to wear out, rather than rust out."
Staying active and being involved in things that were meaningful and satisfying was
clearly a factor in most men's perception of quality of life.
As expected, the precise nature of activity varied from man to man. Many, if not
all, of these activities fall within conceptualizations of leisure. Jack stated, "Gardening is
a big part of my life," and Gus and Darren both expressed a passion for "playing golf."
Gus also mentioned that upon retirement, and aside from golf, he'd looked forward to
opportunities to cook. Another man, Norm, commented, "Well, there are many other
definitions, I'm sure, of quality of life. I mean, I enjoy good food, good music, good art."
Charles shared a similar outlook, after disclosing an interest in gardening:
[Quality of life] is in good books, good food, good wine, but not in excess -- we are
not an excessive people .... I do enjoy good music -- I love music -- and
sometimes movies, and reading -- I love to read.
Another man, Eric, spoke specifically about his taste in music, "I enjoy classical
music. I enjoy good hard rock music. I enjoy any kind of good music, as long as it is done
by someone who really knows what they're doing, with few exceptions." Several men
spoke of service and activities done for the sake of learning. Frank commented, "I believe
in lifelong learning. I believe in using my mind." For Irving, opportunities to serve others
were central to his quality of life, and he gave examples of serving as a consultant for a
local university, serving in ecclesiastical positions for his church, and serving meals to
the poor. Leroy stated simply, "I would like to make a contribution to the community in
which I grew up," and he shared examples of his involvement with his church and service
on a Board of Trustees for a nearby community college.
Eric stated, "I enjoy the out-of-doors." Later in the interview, I commented, "You
mentioned enjoying the out-of-doors. Is that something you usually do with other people,
or do you enjoy being out-of-doors by yourself?" He replied:
With my boys, I've enjoyed that very much. I enjoyed that, it's something that, to
really enjoy, well, you can do it yourself or you can do [outdoor activities] with just
a few people -- I don't care to do it in a crowd. I like to have it quiet, I like to hear
and see and so forth. If you have someone who is dragging through the woods and
making a lot of noise you're not [going] to see anything and you're not [able] to
hear much. But [to] truly appreciate it, to truly observe it, one has to be quiet. But, I
love to share it with someone too.
This comment provided more information that brought up aspects of activity that,
for him, made being out-of-doors more meaningful. For Eric, being out-of-doors was
most satisfying when sharing time with his sons in a setting that was undisturbed and
peaceful. Jack echoed similar feelings about nature when asked, "Has your definition of
quality of life changed, then, as you have grown older?"
Oh, I think when we are young we have a very narrow approach to life... But you
find as you get older that you appreciate the lake, and the wildlife the lake is
Other Parameters of Quality of Life
These previous comments and quotations highlight the fact that these men viewed
being active and being in activities as important within their appraisal of what constituted
quality of life. Undoubtedly, the nature and rate of activity changed throughout their
lifetime due to a number of potential factors or variables. The transition(s) surrounding
retirement, notions of masculinity and its relationship to sexuality or sexual expression,
and interaction with posterity for the sake of generativity are hereafter explored.
The retirement transition
Unmistakably, the transition from work to retirement whether that impact is
emotional, psychological, or social and how it affects one's self-image or self-esteem is
present within the experience of many older men's lives. The experience of retirement is
one that many look forward to with some combination of dread and excitement. For
some, depending on the resources available, retirement offers the opportunity to realize
plans to travel, spend more time with a spouse or loved ones, or play golf now that free
time is in greater abundance. For others, though, retirement may co-exist with challenges
associated with declining health, death of a spouse or partner, and a loss of one's earlier
identity. During the interviews, many men included information and feelings about
retirement within the description of their life. When asked, "So are you retired now?"
Charles shared, "Yeah... I have to accept bumbling through life." While speaking with
Alan who was rapidly approaching retirement, the conversation began when I said, "Let
me just ask you what it means, then, to be a man? What is a man like today?" Alan
replied by offering the words of his surgeon, to whom he had asked the same question.
He said the surgeon stated, "Well, look, you're able to do your work, you're carrying on
your daily activities, you're able to do the Lord's work, you know, be thankful." Alan
followed that up by saying:
I think there is a lot of truth to that, and of course, when I'm retired I won't be
having a livelihood occupation, but I'll still be able to do a lot of things, you know.
You've got husband, got grandfather. I've got a grandchild coming to visit us this
week, and I hope to spend cultivating time with our family, you know, letting my
children know I'm proud of them. And I thought, I'd like to visit those kids, this is
an important time in their lives, before they go off for college, and it's way the
heck across the country -- you can't do that when you got a job.
He was then asked if that was one of those things he would like to do after
retirement and he stated, "Yeah, I think so. Like, if one of them has a graduation or
something, we could go out and help them celebrate, you know. And maybe be some
influence with them. Those kids could really, you know, they are at the age when they
can do a lot." I replied, "I'm sure they are," to which, expressing a wish for his
grandchildren, he added, "Especially if they have good self-confidence," seeing himself
as one who could help that self-confidence grow.
Darren was asked, "So, are you retired now, officially?" He responded, "I retired
officially in '96. It was just a good thing for me to do, for me and my family." At this
point of the interview, he described mental health challenges of some 5-10 years earlier
which were of such severity that he stated, "I never want to do that again," because "it
was just a toll on my family, which I'm very close to. I said, 'I will not go through that
again and I don't know what I'm going to have to do in order to not do it,' but I said, 'I'll
do whatever.'" He then explained how he followed the suggestions of relatives and
retired, which he was able to do, in part, because his wife owned her own business. His
transition from retirement, he said, lasted about a year, and "at first I felt guilty ... the
only thing I did was play a lot of golf for three months."
When interviewing Frank, I said, "What do see yourself doing then when you retire and
you have the whole day to yourself?" He replied:
Well, I have thought about this, and I said this to many people, yes, I don't see
myself retiring, I can't retire and sit down. I mean, I can't. To me, retirement is
being able to do what I want to do, when I want to do it, for however long I want to
do it. And if I wake up and I decided on this day that I don't want to do it, then I
don't have to. Retirement adds a whole lot of flexibility. It's getting out of that
When asked if that entailed becoming a creature of "un-habit," he replied, "Yes, but
by no means becoming an inactive creature. Activities for me, how shall I put it, personal
satisfaction, psyche, etc., I am going to have to be active, mentally and physically, the
rest of my life. That is how I will be happy."
Jack stated he had retired at the age of 59, seven years previous to the time of the
interview, and he experienced a quick transition. He was asked, "Was there a big switch
for you, in terms of transition from work, work, work, to a life of retirement?" His
Yes, and it lasted about a day [he laughs]. I wasn't able to get my desk cleaned out
until about 6:30 p.m. that last day. And on my way home, I called my buddies, and
I talked to them on the phone, and I cried. Because for 40 years, all of a sudden
you're leaving, and like I said, it lasted about a day, and I loved my job, but I
haven't missed it a second.
While talking to Norm about retirement, the question was asked, "Was there much
of a transition period there?" He commented first about his partner, stating, "[My wife]
was getting along fine." In turning his focus to himself, however, he stated:
I didn't adjust to it as well. I wasn't lamenting and moaning about, 'Oh, I wish...' I
suddenly missed all of my contacts and friends, and I guess I had enough ego to
realize that, yeah, a lot of people depended on me, and I wondered how they are
getting along.... Of course this was back in [stated name of city], and you hear from
people time to time, people asking for a letter of reference, etc.
Norm said he still was interested in providing those reference letters, and that, "In
most cases they got the job. But, I think, it was difficult to turn loose ... So, my life
touched a lot of these lives, and, you know, in different ways, and I missed it, I guess I
really did. Looking back on it, yeah, I missed it. [My wife] would say, 'He missed it.'..."
Speaking more to the topic of retirement and activities he was interested in, he said,
"We've been very active here, I am very active in my church. I am the commander of the
American Legion post, for six years now." Later, he commented:
Now, there are some people that we know that have [the free-time of retirement],
but don't really enjoy it. Oh, I won't say they are miserable, but there are people
who I know who are retired, and they say, 'Oh, I wish I was still working,' or 'That
old job of mine, I wish I could get it back.' And, you know, what are you talking
about man, you [laughing] have worked all your life, you want to go back. I
thoroughly enjoyed my job, but I don't want to go back.
The experience of retirement, though not a primary focus of this study, was found
to be a relevant theme as it described a stage or phase of life that most of these men had
encountered and made his reality. This reality provided much of the context within which
they then experienced prostate cancer.
Notions of masculinity
What it means to be a man, or one's sense of manhood as it relates to parameters
regarding quality of life, is a topic that has been explored, particularly related to the
impact of prostate cancer (Galbraith, Ramirez, & Pedro, 2001). Men who were
interviewed were willing to share their opinions about masculinity and, like many other
themes, a diversity of perspectives were shared.
Darren, in answering the question, "What kind of describing words or adjectives
would you associate with manhood, if someone says 'Be a man'?" stated, "I have always
enjoyed my masculinity. I enjoy sports, of course." Many men, in fact ten of the fourteen
interviewed, cited their father as being influential on their outlook about masculinity. To
Alan the question was asked, "Is this an outlook you gained from your father, or earlier?"
Probably grew up with it. Yeah, it was a world of work, work, work, you know?
Everybody works or you don't make it, you know, and that kind of thing. And I
used to have a lot of slogans, proverbs back in those days, you know, "What you
don't have in your head, you've gotta have on your back."
Charles, when asked a similar question, commented:
I have a difficult time even saying what it is today, because some of the havoc. It
was a rather uncertain childhood, being raised by grandparents and two old maid
aunts in a big house. And then going to my parents' home, and he [his father] was
very happy-go-lucky, he was a great guy. Unfortunately, we found out that he was
not too good a father. [laughing] He loved women, and it was all right in
[mentioned a South American country], it was sort of accepted. As long as you did
not cause the family to lose face. But dad took that beyond that.
Charles was then asked about the time he spent in South America with its particular
notion toward masculinity. He replied:
My problem is that I was being raised by two cultures. By [a particular South
American] culture, the man is supposed to go out and be nothing but a sperm
dispenser. He will have two or three mistresses, because you don't have slaves, you
have servants, and you have lots of extracurricular activities. Men from these nice
families would be down at the whorehouse, very openly. And it was seen as being
unseemly and unmanly if you didn't participate. But my, I was raised by
grandparents, by my grandfather, that were very strict, very honest, known
throughout the town as an honest man; and two old maid sisters, so I was protected
from the carousing end. So all that was expected ... Families knew that the father
would have other separate families, and if his visit didn't interfere with them, it was
tolerated. In fact, it was considered to be the manly thing to do. On the U.S. side
though, Dad was the abnormality.
Brian, who was the only man interviewed who had not been married, was asked, "What
do you think about masculinity and its place in your life, now or in the past or in the
future?" He replied, "Ah, masculinity, [it's] an issue I don't think I've given much
thought." When asked for his definition of masculinity, he hesitated, then said:
Um, I don't know if I have one, um, I am just lost on being a "man" .... I have
never given much thought in my life about being a man. I am not a macho type at
all, never was. So I maybe subconsciously, maybe I went through things when I
was younger, I don't worry much about it now. You know, I suppose every
teenager has to resolve, or at least try to resolve, or make an effort at it.
Curious if Brian's experience with resolving masculinity issues were somehow tied to
what is sometimes viewed as a spouse's role in the co-construction of gendered roles or
attitudes, I followed up his statement by inquiring, "Haven't had much reason to?" He
replied, "Well, one goes through life and you ask a pretty girl for a date, and then you
start thinking, 'Well, what's the matter with my "masculinity"? Am I presenting the right,
the proper image?' Asked if he was referring to gender roles, he stated, "Yeah, when I
was younger I suppose I thought about that. As an old man, I can't be bothered too much
about that." He was then asked, "Do you remember a time in your life when it was a
bigger deal?" He answered, "Well, sure, when I was a teenager I'm sure it was a bigger
deal. It depends on how you define it."
Gus was asked, "Throughout your life, what has it been like being a man your sense of
manhood, or masculinity?" He, after a pause, stated:
I don't think I have much concept of that. I look upon myself as a human being that
relates, hopefully, very intimately with one or two other human beings. And then, I
have a goodly number of acquaintances. [My wife] is probably the most important
thing in my life, I really was the luckiest guy in the world to find her I really was.
She is a great person. So, but I've really never thought of anything in terms of
masculinity. Not really, maybe when I was playing baseball or soccer or something
of that nature.
Darren shared a different experience. When asked if he had thought about what it's been
like to be a man, the concept of masculinity, and his father's influence, he replied:
No, I was the baby of the family. I have a brother who was six years older than me,
and a sister ten years older than me, and a brother twelve years older than me. And
he was pretty rough on them. Except my brother who was just older than me, was
one of those perfect kids. And he was.
He was asked, "In his father's eyes? In everyone's eyes?" and he continued:
In everyone's eyes. He and I are the only ones still living, but he just, he just was a
real good kid. He did what he was told to do. He went to work when he was twelve
or 13 years old -- milking cows -- he would get up at four or five o'clock in the
morning and, of course, they didn't have automatic milkers back then, and so he did
it by hand ... and then he would get home from school, do his homework, do his
chores, and then he'd go back over there and milk them again. I think there was
something like 15 cows that he had to milk every morning and every afternoon. But
anyway, he just didn't give either one of them, my mother or Daddy, any problems.
And my dad ruled our house with an iron hand, I mean, that was the way he was
raised. All my mother's and daddy's people are from [mentioned Southern state]
and they... [pause] it was just the way it was done.
When asked if that trickled down to him or not, he replied,
No, no, in fact, I was just the opposite. I have never had much trouble ... It wasn't
him, you know? He just didn't, he wasn't subjected to it as a kid himself. His
father, my grandfather, was mean. That was what he knew. He probably didn't
know how but, the only thing, when I came along he had mellowed out. He had
quit drinking for the most part. And I got away with things that my other two
brothers would have gotten half-killed for. Now he beat the living hell out of me
two times, and I remember both of them distinctly. But, uh, he, when I was in first
or second grade, and I don't remember which one... I can pretty well read the
newspaper. And he would get me up on his lap and have me read for him. And, uh,
as far as any kind, I can't remember any time when just he and I did something.
When asked about the origins of his sense of masculinity and manhood, Eric
responded, "Yeah, I suppose from my dad, I have no doubts about him being a man."
Harold's response to a similar question was:
Well, my model was my father. I saw him as a person who used his strengths in a
caring way, a helpful way, usually in a gentle way. With the exception of personal
problems that he had, because he was raised by a mentally ill mother who had a
vitamin deficiency that led to insanity. His mother would love him one minute, and
beat him the next, so he had an emotional roller coaster growing up which took its
toll on him. So he would have moods of anger and blusteriness and shouting,
especially at my mother ... But, fortunately, there was the other side, too, when he
would use his manly strengths, both mentally and spiritually and physically, in a
beneficial way, like being protective of us children and mother, and helping other
people. His main focus of his ministry was visiting the sick. So he had a very
tender, caring side. He had a lot of physical strength in his younger years, and I
admired that. And his ability to do heavy physical jobs....