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SOCIAL SUPPORT, SOCIAL NETWORKS AND COPING OF PARENTS OF CHILDREN WITH CANCER: COMPARING WHITE AND AFRICAN AMERICAN PARENTS By HOLLY ANN WILLIAMS 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 1995 Copyright 1995 by Holly Ann Williams This dissertation is dedicated to the memory of Jodi Michelle Lukacs, who was born on November 11, 1974, and died on May 22, 1978, from aplastic anemia. Jodi was one of my first patients that I cared for as a young staff nurse at Yale University Hospital, New Haven, Conn. As only a young child can, Jodi taught me that life is precious, and filled with wonder and joy, even when one is faced with a life-threatening illness. Jodi's influence on my personal and professional life was profound, and she significantly altered my career choices. My relationship with Jodi convinced me to work with chronically and terminally ill children and their families. I have never regretted that decision, and this dissertation is a way of offering thanks to the memory of Jodi. This dissertation is also dedicated with love to Jodi's family: her mother Bonnie, her father Roy, and her baby sister Karie, who all taught me that life can have meaning, in spite of tremendous human tragedy. ACKNOWLEDGMENTS There are many people to whom I owe gratitude for assisting me with this dissertation. First and foremost, I would like to thank the parents and children for allowing me to enter some very private moments in their lives. They tolerated seeing me in the examination and hospital rooms, they talked to me during periods of extreme stress, and they stayed late on clinic days so that I could finish an interview. This is their story and I deeply appreciate their kindness, their humor, and their patience. I also could not have done the interviewing without the assistance of all the health care professionals. They are too numerous to mention, but they include nurses, physicians, social workers, aides, child life therapists, pharmacists, etc. In spite of very busy days and, often grueling schedules, they helped me in whatever ways I needed. For the out-of-town sites, I was always made to feel welcome and part of the staff. The staff humored me and often helped me to decompress after difficult interviews. This is also a story about the work that they do on an everyday basis. This research would not have been possible without the financial support that I received from various sources, most notably a five-year pre-doctoral fellowship from the National iv Cancer Institute. I am deeply grateful to the following sources of support: National Cancer Institute, Nurses' Educational Funds, Inc., Transcultural Nursing Society, Association of Pediatric Oncology Nurses, and the Alpha Theta Tau chapter of Sigma Theta Tau, International Nursing Honorary Society. My research assistant, Ms. Karla Slocum, and my transcriptionist, Ms. Monique Costantino, put in much time and effort to assist me. Both were very interested in the research and gave me much needed support during the times I wondered if I would ever finish. My committee members have been with me since the beginning and have offered support, encouragement, and wisdom. My outside committee members went far beyond the usual commitments for committee members and gave willingly of their time and efforts. Dr. Marjorie White was my nursing colleague before she was a committee member. She gave me support and empathetic understanding for the challenge of blending two professional fields. Dr. Joe Feagin has been essential to my beginning understanding of race relations. He not only stimulated my thinking, but he made me challenge my own preconceived notions about our society. He was always generous with his time and was only a phone call away during tough weekends of analysis and writing. Dr. Gary Lee has nurtured my interest in family studies since the beginning of my graduate career. He helped me to think like a sociologist, as well as an anthropologist. He also spent much time just being there for me. The anthropologists on my committee helped to shape who I am as an anthropologist. Dr. Otto von Mering taught me the wonders and the perils of being a medical anthropologist. He offered suggestions for making my daily life sane, particularly during the last few months Dr. Tony Oliver- Smith sharpened my thoughts concerning the place of human tragedy in our lives. He stimulated me to understand personal meanings that we use to contextualize events in our lives. My chairperson, Dr. H. Russell Bernard, has been involved in my career since the beginning of my doctoral program. He taught me the importance of grantsmanship. He also worked hard over the years to improve my writing skills. Whatever improvements I have made, I owe to him. I deeply thank my committee members. I owe a large debt of gratitude to Dr. John Dixon, Coordinator for Computer Applications, at the Center for Instructional and Research Computing Activities (CIRCA) at the University of Florida. Although not a committee member, he patiently and consistently worked with me on my statistical analyses. His mentoring skills are excellent, and he believed in my abilities. From him, I learned statistics, data analysis, and that I was capable of doing complex analyses. Family and friends all across the country offered listening ears, words of comfort, and laughter when it was most needed. They understood how the process affected our friendships, and were patient. My pediatric oncology nursing colleagues reminded me how important this research was to our practice. Perhaps the hardest people to thank are my family members. I am sorry that my father, Plummer H. Williams, did not live long enough to see me finish the research. He and my mother, Jane Williams, were always by my side. Many times they did not understand the process, but they were there for me. My sister, Dr. Susan Williams, knew from first-hand experience how grueling doctoral studies were. She was a critical support for me. She will never know how grateful I am for the long-distant calls, the encouragement, the cheers, and the constant belief in me as a person, as well as a future scholar. I offer much love and gratitude to my husband, Dr. Art Hansen. He had to straddle two difficult positions, being a faculty member in anthropology and being my husband. His never ceasing love and words of support carried me through the bleakest times. I could not have done this without his love. My life was enriched during my doctoral studies by having two children enter my life: my stepson, Akim Ben Hansen, and my daughter, Kaitlin Williams Hansen. Akim challenged my thinking on everything, but always made me laugh and look at life from a less serious perspective. Kaitlin gave me the gift of her precious little self and, with that gift, I vii understood my priorities. While education and research are important, family ties are what really matter in the end. viii TABLE OF CONTENTS ACKNOWLEDGMENTS . . ABSTRACT . . . CHAPTERS 1 INTRODUCTION . . Like a Blanket of Love . Aims of the Study . . Research Questions . . Theoretical Framework . Outline and Descriptions of Chapters 2 SOCIAL SUPPORT AND SOCIAL NETWORKS Social Support . . *. .. .. 1 Attempting to Define Social Support . Social Support and Psychological Adaptation Social Exchange Theory .. ..... Negative Aspects of Social Support . Reciprocity and Social Support . . 15 S18 Relationship Between Social Support and Social Networks . . Social Networks . . Network Research Findings . Personal Networks . . Geographical Distances From Networks . Density of Networks . . Social Support, Social Networks and Cancer The Role of Social Support in Parenting an I11 Child . . 3 AFRICAN AMERICAN FAMILIES . . r Historical Review of the Social Forces Shaping the African American Family . r The Period of Slavery . . African Influence . . Emancipation Through the Early Twentieth Century . . The Viability of the African American Family Cultural Deviant or Pathological Model . Cultural Relativity or Cultural Variant School . . . Adaptive Responses to Society . Contemporary Family Organization . Societal Trends Affecting Families . Causative Factor for Family Structural Changes . . . Social Networks and the Provision of Support Social Networks of African American Families Extended Families . . The Consequences of Support and the Need for Reciprocity . . Informal Ties . Comparisons Between African American and White Social Networks . . Relationship Between Patterns of Support and Family Structure . . Helping Traditions in African American Communities . . Conclusions . . . 4 COPING . . . Review of the Literature . . Coping: Definitions in the Literature . Anthropological Use of Coping . Historical Approaches to the Study of Coping Models of Coping . . Empirical Testing of the Coping Process . Family Stress and Coping . . Coping with Childhood Cancer . Limitations to the Literature . . Cross-Sectional Design . . The Use of Retrospective Data . Lack of Multi-Variate Models . Situation-Specific Studies . . . 35 . 37 . 39 . 46 . 48 S 50 S 50 S 52 S 55 . 57 64 65 66 68 68 68 74 75 78 88 96 106 113 113 113 114 116 . . . . . . . . Cultural Influences to Coping .. 116 Demographic Characteristics That Have Been Ignored . . 117 Unsolicited and/or Negative Sources of Support . ........... 118 Measurement of the Coping Process and Desired Outcomes . .. 118 Outcomes . . 119 Efficacy of Coping . .. 120 5 STUDY DESIGN AND METHODS . .. 122 Human Subjects Protection . 122 Sample and Settings .............. 124 Data Collection Schedule and Procedures .... .127 Instruments . . 129 The Interview . .. 129 Instruments Used to Measure the Outcome Variables . . 130 Social Network Inventory . .. 131 Historical Influence on Sampling ... .132 Analysis . . 135 Social Networks . ..... 136 The Ways of Coping Questionnaire (WCQ) 137 Brief Symptom Inventory ... .. 155 Center for Epidemiological Studies Depression Scale (CES-D) ... 157 Coping Health Inventory for Parents (CHIP) 157 Testing the Conceptual Model .. 158 6 PARENTS OF CHILDREN WITH CANCER: DEMOGRAPHICS .162 Pediatric Oncology Services in Three Research Sites . . ... 163 Atlanta, Georgia . .. 165 Gainesville, Florida . .. 166 Jacksonville, Florida . .. 167 Parent Demographics. . .168 Socioeconomic Demographics . .. 170 Employment Status . .. 173 Marital Status . .. 176 Characteristics of the Ill Children . Age of the Ill Child .. . Gender of the Ill Child ... Variables Pertaining to the Children's Illnesses . . Financial Costs and Burdens Caused by the Child's Illness . ... Gross Estimates of Out-of-Pocket Costs of Child's Illness . . Additional Jobs and Loans as a Way to Supplement Income . . 7 THE PROVISION OF SOCIAL SUPPORT: WHAT IT IS AND WHO PROVIDES IT . . A Heart Feeling . . Emic Definition of Support . . Coding of Responses for the Definition of Support . . Definition of Support as Compared by Race Provision of Social Support . . Situational Types of Support . Offers of Spontaneous Assistance . Support During Periods of Hospitalizations Financial Assistance with Costs of Illness Social Networks: Membership and Structural Aspects . . . . . 189 189 190 . 191 . 195 . 198 198 205 206 219 . 222 Network Membership Features . Perception of Support from Alters . Structural Characteristics of Social Networks Relationships of Social Network Measures to the Psychological Outcomes . Concluding Discussion of Social Support . 8 THE PROCESS OF COPING AND ITS INFLUENCE ON PSYCHOLOGICAL OUTCOMES . . Types of Stressful Events Experienced by by the Parents . . Influence of Type of Stressful Event on Coping Behaviors . . Secondary Cognitive Appraisal of Stress . Types of Coping Behaviors Used in Response to Identified Stressful Events . 223 228 230 233 235 242 242 245 253 . 255 xii 178 178 178 179 182 183 186 * . . . . . Significant Differences in Types of Coping Behaviors Used by Race and Gender 255 Significant Differences in Functions of Coping by Race and Gender . .. 258 Perceived Satisfaction with Outcome of Stressful Situation . .. 259 Does the Process of Coping Affect Psychological Outcomes? . . 263 Comparison of Mean Scores of Outcome Variables by Coping Type, Gender, and Race 270 Do Coping Patterns Predict Psychological Outcomes? ... . ... 273 Influence of Type of Coping and Perception of Control on Psychological Outcomes 276 Correlations of Independent Variables and Dependent Variables . .. 280 Multiple Regression Results with the Full Conceptual Model.. . 282 Comparison of Parents' Psychological Outcomes to Other Populations .. . 285 Limitations and Discussion of Findings in Regard to the Theoretical Framework .. 293 9 PARENTS' PERCEPTIONS OF RACISM AS A FACTOR IN OBTAINING MEDICAL CARE FOR THEIR CHILDREN 298 Racism, Discrimination and Health Care .. 299 Interview Questions Pertaining to Racism and Discrimination . .. 303 Parents' Perceptions of Racism in the Pediatric Oncology Setting . .. 304 Differences in Care Based on Race ... 307 African Americans' Perceptions Regarding Differences in Care Based on Race 308 White's Perceptions of Differences in Care Based on Race . ... 308 Illness and Medical Treatments as Buffers from Everyday Racism . .. 310 "I Didn't Notice It or Didn't Care to Notice It . . 313 Personal Observations of Racism. .315 10 CONCLUSIONS .................. .319 Personal Reflections about the Research .. 319 Random Acts of Kindness. . .324 Summary of Research Questions and Hypotheses 325 xiii Major Research Questions and Aim of the Study . . 325 Summary of Findings Pertaining to Social Networks . . .. 327 Summary of Findings Pertaining to Support 331 Summary of Findings Related to Coping 334 Summary of Research Hypotheses .. 335 Review of the Theoretical Base of the Research ... ........ .. 339 Modification of the Conceptual Model .. 341 Implications for Applied Practice . 344 Suggestions for Family, Friends, and Others in How to Assist Parents of Ill Children 347 Areas for Future Research . .. 352 APPENDIX A INTERVIEW SCHEDULE . .. 355 APPENDIX B SOCIAL NETWORK INVENTORY . .. 361 REFERENCES . .. 362 BIOGRAPHICAL SKETCH. .. . .391 xiv 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 SOCIAL SUPPORT, SOCIAL NETWORKS AND COPING OF PARENTS OF CHILDREN WITH CANCER: COMPARING WHITE AND AFRICAN AMERICAN PARENTS By Holly Ann Williams May 1995 Chairperson: Dr. H. Russell Bernard Major Department: Anthropology Having a child diagnosed with cancer is an overwhelming experience for parents. The goal of this research was to understand why some parents do better with this situation than do others. Research questions included the following: Who provides support to the parents? What is provided? What do parents do to cope? In addition, this research compared white parents to African American parents in an effort to explicate racial and cultural differences in experiencing childhood cancer. Two hundred two parents (150 white and 52 African American) of children with cancer were interviewed in a hospital or clinic setting in three southeastern US cities. In addition, several standardized psychological instruments were used to measure anxiety, depression, somatization, and general level of psychological symptomatology. Qualitative and quantitative analyses were performed on the data. This was a story of courage and of incredible human caring for others in distress. Overall, there were few significant differences by race, gender, or site. These parents had multiple sources of support. White parents had larger social networks, but African Americans perceived receiving more support from their network alters. Networks were small, dense, kin-centered social networks of long duration, with members living near to one another. Emic definitions of support differed by race, with whites defining support in emotional terms and African Americans defining it more broadly, both in terms of emotional and instrumental actions. Social network properties and characteristics did not significantly correlate with or predict the psychological outcomes. Most parents used a combination of problem-focused and emotion-focused coping behaviors to deal with stressful situations. Only a small percentage of parents showed poor psychological functioning. However, use of emotion-focused coping behaviors, particularly escape-avoidance behaviors, best predicted poorer psychological outcomes. Few of the variables commonly thought to influence positive outcomes (such as social support, income) predicted the psychological variables. The experience of having a child with cancer was so encompassing that nothing else mattered, not the amount of support, or who provided it, or how much. xvi CHAPTER 1 INTRODUCTION Like a Blanket of Love This is a story about everyday people who are experiencing one of the biggest, most demanding, and frightening challenges of their lives. They all are parents of children with cancer. The children are of different ages, have different diseases, and have different prognoses. However different these families may seem initially, the experience of being told that your child has a potentially fatal illness unites them in a myriad of ways. From hearing the chilling words at diagnosis, "your child has cancer," to traveling over and over again to the cancer clinics and hospitals, to the days of waiting for lab test results, the lives of these families are irreversibly changed. For some families, this challenge heightens their spirit of life and is turned into a positive challenge to be met together. For others, the days become a vast wasteland from which nothing good could ever spring, filled with pain and isolation. Family becomes a metaphor for broken spirits and failed promises. 2 While the specific details may vary as to the physical environment or the people involved in the actions, the daily drama of childhood cancer is repeated hundreds of times in clinics and hospitals across the country. In some settings, there is an attempt to make the surroundings as pleasant and conducive to normal childhood activities as possible. One sees volunteers assisting children with fun things to do; furniture is bright and child-sized; examination rooms are painted with murals and motifs and come with hanging mobiles so that the children may concentrate on fantasies, and not on medical procedures. Other clinics look like any standard hospital area. The walls are a drab green or gray, there is never enough room for everyone to sit down, equipment is scattered around the hallway, and there is a sense of chaos that permeates throughout. Children and families appear to get lost in the vast machinery that is called the "medical system." Yet appearances can be misleading. It only takes a few moments of sitting with the children and families to realize that something intangible occurs in these spaces. An overwhelming sense of caring for these children and a profound respect for the resilience within each child are seen over and over again in many different ways. Although cluttered, the hallways and the examination rooms are filled with photos of the children and the children's hand-drawn pictures. People stop whatever they are doing to give or get a hug from the 3 children, and to take time to listen about the latest school adventure or a new pet in the family. Families learn about each other and become "friends" in a very special way that is circumscribed by events and the clinic or hospital surroundings. They share in the joy of good news, in the fear when their children come off treatment, and in the grief of a relapse or death. Their silent language of shared understanding is so well communicated that words are often inconsequential. The research presented here focused primarily on the parents of the children. The story would not be complete, however, without recognizing the efforts of others. For many of the families, help comes from the health care staff, family members, co-workers, and neighbors. Perhaps most striking was the kind assistance I saw being given by strangers who reached out to touch the lives of children and parents with whom they had never met. As one mother described the support, it was "like a blanket of love that surrounds you and protects you from what you are going through at the time." I have been a pediatric nurse specializing in pediatric thanatology for 18 years. These months of research have, once again, filled me with awe and wonder of the human spirit. I watched these families cope with incredible circumstances that made me shudder at times. Yet, they maintained a sense of humor and an awareness of others, and they survived in the truest sense of the word. Aims of the Study My research was motivated by these questions: Who provides support to the parents? What is provided? What do parents do to cope? The goal was to understand why some parents do better with this situation than do others. Historically, studies on coping and social support of parents of children with cancer used white parents for subjects. Yet the pediatric oncology population is racially and culturally diverse. This research compared white parents to African American parents in a effort to explicate racial and cultural differences in families experiencing childhood cancer. The specific aims of the study were a) to describe and understand the differences for African American and white parents in the experience of parenting a child with cancer, 2) to understand why some families experiencing childhood cancer seem to have more social support than others, and 3) to ask whether African American parents experience problems, based on race, in receiving care for their children. Research Questions The research questions were as follows: 1) Are there racial or gender differences in the characteristics of the social networks of parents of children with cancer? 5 2) During the period of the child's illness, how do social network members function to exacerbate or alleviate the stress of having a child with cancer? 3) Are certain network properties associated with the perception of being supported? 4) Are certain network properties associated with better or worse levels of psychological symptoms? 5) How much support is given to parents of children with cancer? Does this vary by race or gender? 6) What types of support are given to parents of children with cancer? 7) Do different ways of coping predict better psychological outcomes for these parents? Theoretical Framework Lazarus and Folkman's (1984) transactional model of stress, appraisal, and coping is the theoretical base of the research. Coping is examined in detail and is tested in a theoretical model to see if it predicts psychological outcomes in the parents. Coping is defined as "constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person (Lazarus & Folkman 1984: 141). Coping is further differentiated into problem-focused coping and emotion-focused coping. Problem-focused coping is defined as "coping that is directed at managing or altering 6 the problem causing the distress," while emotion-focused coping is "coping that is directed at regulating emotional response to the problem" (Lazarus & Folkman 1984: 150). A conceptual framework built on the stress, appraisal, coping model of Lazarus and Folkman (1984) guided my research questions (see Figure 1.1). Personal factors, such as race, gender, education, marital status, and social network characteristics combined with situational/environmental factors (income, total amount of government assistance received, length of child's illness, and social support) to influence the primary appraisal of a stressful situation. Secondary appraisal was thought to be influenced by social support, degree of perceived control over the stressful situation, as well as the personal and situational factors that influenced primary appraisal. Coping behaviors included emotion-focused coping and problem-focused coping. An immediate outcome from the coping process was the perception of satisfaction with the outcome of the stressful event. Longer-term psychological outcomes included anxiety, depression, somatization, and global level of psychological symptomatology. At any point in this process, feedback mechanisms could influence prior variables in the model. This study also tests the applicability of previous social support findings for African American families in crisis. It compares coping across racial and gender o0 - 0 (D -o -0 1 0 ' 0I 0 c E m 5 E E t E a. C, c 0 0 o L,- o -o 0-- _0_ m a ra v) 00 o 0 , N a " 1 U E 0 / 0 ) L " 0 0 > o -0 o0- .o E 0 0 a f o E0 v " E u E > > c o5 ." 0 *L5 !E o c .2 o ._ E " 0 o ,c o - O - 00 Ch 0 04 a) S" 0 *0 m 44 N1 "0 0 a, -4 0) 4 iO0 Ha) MA > ,-) to r-4 m wo Uom o..4 0 *4 (0 4)0 4 0 41 0 O.O 4.- 0 2O4 $4 -4 0 ,- 0 0 manI 0 04 1O O a r:: 04 0) 4J r S- 0 *0 OOC 0 0C H) U M , u E0) .,-I 4 a X <<^l u >< (0 *PO Z tn IT 8 categories. In addition, it examines whether racism is an additional burden to African American families. Based on a literature review and two pilot studies conducted prior to the dissertation (Williams 1992, 1993) the following hypotheses guided my work: 1) In situations characterized by a perceived minimum of control, parents who use emotion-focused coping strategies will demonstrate positive adaptational outcomes (e.g. lower levels of psychological symptoms, less depression and anxiety); 2) in situations characterized by a perceived sense of control or changeability, parents who use problem-focused coping will demonstrate positive adaptational outcomes; 3) social network characteristics (e.g. size, density, length of time members have known one another) will not predict perception of support; 4) white parents will define support primarily as emotional interactions; 5) African American parents will define support primarily as instrumental actions; 6) married parents will perceive and receive greater levels of support than single parents, irrespective of race; 7) parents with higher incomes and education will demonstrate a higher level of perceived support and will receive greater levels of enacted support; 9 8) higher incomes will be associated with larger social networks; 9) parents with lower incomes will demonstrate greater psychological symptomatology, with single poor parents having the worst adaptational outcomes; and 10) the shared experience of parenting a child with cancer will diminish racial and cultural differences between the African American and the white parents. Outline and Descriptions of Chapters The dissertation will present selected aspects of the entire research process. Research findings that are not presented in the dissertation will be completed at a later date in the form of manuscripts submitted for publication. As usual, I have far too much data to ever include in one dissertation. Although much of the dissertation focuses on the quantitative analyses that I completed, qualitative analyses were also performed. Whenever appropriate, the qualitative material will be combined with the quantitative findings for better illustration of a point or concept. Verbatim quotes will be used throughout the text to portray the sentiments of the informants in their own words. Names, institutions and locations will be disguised as needed to preserve the confidentiality of the informants. Chapters 2 through 4 review pertinent bodies of litera- ture. Chapter 2 reviews social support, Chapter 3 discusses 10 the African American family, and Chapter 4 details coping. Chapter 5 outlines the study design and the methods that I used. Chapter 6 provides demographic information on the informants, the ill children, and the research sites. In addition, information pertaining to the financial status of the parents is presented, as finances were a major worry for these parents. Chapter 7 presents the findings related to social support and social networks. Support is defined emically by the parents. The types of support offered to the parents are discussed, as well as identifying the support providers. Structural aspects of the social networks are detailed. The chapter concludes with a discussion of whether social network attributes contributed to the psychological outcomes of the parents. Chapter 8 focuses on coping. It looks at which coping behaviors are used to manage a particular stressful event using data from the Ways of Coping Questionnaire (Folkman & Lazarus 1988a). For the sake of brevity, the second coping instrument used, the Coping Health Inventory for Parents (McCubbin & Thompson 1983), will not be discussed in the dissertation. Data regarding whether coping predicts psychological outcomes will be presented as well as the results of multiple regression analyses based on the conceptual model. Selected social network variables, demo- graphic variables, social support variables, and coping variables were all entered into the conceptual model. Chap- ter 9 presents the results of whether African American parents 11 perceived racism and discrimination as problems in obtaining care for their children. Chapter 10 summarizes the major results of the research. Personal insights gleaned from the research are shared. Each research question and study hypothesis is reviewed. The theoretical base of the research is highlighted, and modifications to the conceptual model, based on the findings, are discussed. Lastly, clinical interventions and lay suggestions for offering assistance in this type of situation are outlined. Areas for future research are presented. CHAPTER 2 SOCIAL SUPPORT AND SOCIAL NETWORKS The experience of parenting a sick child can be likened to riding a roller-coaster. Throughout the time of the illness, there are many emotional ups and downs and sharp corners to be turned without knowing what lies ahead. How- ever, what is missing in this simile is the thrill and fun- seeking aspects that one normally associates with riding a roller-coaster. The events and experiences that cause the ups and downs differ as the illness progresses, and parents' abilities to withstand the tensions alter as time goes by. But unlike riding a carnival ride, parents can not simply get up and leave when the ride is finished. The course of the illness varies and may last for years, requiring combined modalities of treatments. Diagnosis is an especially frightening time. For some families, it represents the first time their child has been seriously ill. Some parents and children may have to travel to obtain care at a distant, specialized pediatric oncology center. In an amazingly short period of time, parents are asked to make decisions regarding the care of their child, and to consent to treatment protocols that appear to be written in 13 foreign languages. Hospital routines and a new vocabulary of medical terms and abbreviations must be learned. Hospital and clinic bureaucracies present mazes that, at times, entangle parents in their webs. Parents are confronted with answering never-ending lists of questions, giving medical histories over and over to new members of the health care team, and filling out piles of insurance forms and/or applications for much needed social services. Particularly during the first year of treatment, the out-of-pocket financial costs may exceed the family's expected budget. Few health care professionals remember that parents are expected to perform all these tasks at the same time that they are exhausted from caring for their child and worried about the short and long-term consequences of their child's illness. For many children, their cancer goes into remission and the stresses alter for the parents and children. Although the child appears to be much healthier, the family is still confronted with unexpected emergencies and must plan their daily lives around a series of in-patient hospitalizations and clinic visits. Whatever was deemed as "normal daily life" is now altered due to the child's illness and treatment requirements. New ways of interacting with friends and family are incorporated so that the immune suppressed child is protected. Sibling needs become more apparent and demand parental attention. Parents must deal also with work responsibilities that often were ignored during the initial 14 phases of the illness. Throughout the time of remission, the fear remains that the child has relapsed, and the disease has returned. As the illness trajectory continues, some children are cured, some remain chronically ill for years, and some children die. Each scenario has its own stresses and demands, even for the "cured" child. Years go by and parents worry whether the cancer will eventually return. Social support from a network of family, friends, neighbors, acquaintances, and sometimes even strangers is thought to lessen some of the intensity of the stress in this situation. This chapter reviews the literature on social support and social networks. The term "social support" encompasses both perceived support and received or enacted support. Perception of support refers to the belief that support is available if needed, as compared to support that is actually received. Social networks, the set of relationships from which the support is provided, are also discussed. In addition, the literature pertinent to support for parents of ill children, especially children with cancer, is highlighted. The literature on social support is vast and, at times, unwieldy. This literature review concentrates only on the aspects of support that are most relevant to my research. Recent literature regarding social support and social networks will also be incorporated into the discussion sections of the results. Social Support Attempting to Define Social Support Social support is a complex and multi-dimensional con- struct. It has been studied in a myriad of ways to determine types of support provided, categories of support providers, mechanisms by which support protects people against the negative effects of stress, and even what the best definition is for support. Bruhn and Philips (1984: 152-53) suggest that environmental, physical, social, interpersonal and cultural facets of social support should be considered in any definition of the concept. Classical definitions, such as Caplan (1974) and Cobb (1976), stress the affective component of support. An often used definition of social support notes that it consists of interpersonal transactions that have at least one of three characteristics: affect, affirmation, and aid (Kahn & Antonucci 1980). Gottleib and Wagner (1991: 166) stress the processual nature of support defining it as "a social process that is shaped by the commerce occurring between people in particular relationships who are attempting to maintain their equilibrium in the face of conditions that are personally and socially destabilizing." Social support can also be conceptualized into the dimensions of perception of support, enacted support, and social embeddedness (Barrera 1986). Barrera notes that these concepts were only mildly related and should be treated as 16 separate components of the construct social support. He defines social embeddedness as ". the connections that individuals have to significant others in their social environments" (p. 415); perceived support as the ". the cognitive appraisal of being reliably connected to others" (p. 416); and enacted support as ". actions that others perform when they render assistance to a focal person" (p. 417) (Barrera 1986). I am modifying Barrera's concept of social embeddedness for this research. Consistent with the extant literature, I refer to social embeddedness as simply the parents' social support networks. Social networks are viewed as the source from which social support arises. A consistent and major criticism of social support research is the absence or inadequate conceptualization and operationalization of the construct (Antonucci & Depner 1982; Brownell & Shumaker 1984; Heller & Swindle 1983; LaRocco, House & French 1980; Ryan & Austin 1989; Thoits 1982; Wortman & Dunkel-Schetter 1987). Different aspects of support (i.e., enacted support and perceived support) have been discussed as if they were equivalent (Heller & Swindle 1983). However, research results from the past fifteen years demonstrate that social support can not be conceptualized adequately as a soli- tary dimension. Critics of the early work on support urged for disaggregating the construct into separate components, each of which could then be defined clearly and operation- alized (Rook 1984; Lieberman 1986). 17 Reviewing the literature on social support, Wortman and Dunkle-Schetter (1987: 70-71) suggest that support can be distinguished into the following types: a) expressing agree- ment of a person's beliefs, b) encouraging open expression of feelings and beliefs, c) expressing of positive affect, d) offering material aid, e) offering information or advice, f) instrumental assistance with tasks, and g) acknowledging that the person is part of a system of mutual obligation or reciprocal help. Dunkel-Schetter and Bennett (1990) urge the differentiation of support into cognitive and behavioral aspects. They conceptualize support as either available or activated. Once activated, there are differences in the extent to which people seek support, the need or desire for support in certain circumstances, and the actual receipt of specific types of support from particular persons (Dunkel- Schetter & Bennett 1990: 268). Support has been measured generally in two ways: perceptual appraisal and structural network measures (Ryan & Austin 1989). Both measurement approaches need to be included in research. It should be noted that support changes circum- stantially and temporally and these changes can cause discre- pancies in individual answers versus objective counts of support (Singer & Lord 1984). The relationship between the support provider and the support recipient and how this affects the outcome of the stressful situation is a component 18 of social support research that is sorely lacking (Coyne & DeLongis 1986). Social Support and Psychological Adaptation Since Cassel's (1974) classic paper on the relationship between stress and social support, researchers have been studying if and how social support protects people from the effects of stress. Numerous papers have summarized the beneficial effects of support in a variety of situations (Bloom 1982; Broadhead & Kaplan 1991; Brownell & Shumaker 1984; Dean and Lin 1977; Lin, Woelfel & Light 1985; Wortman & Dunkel-Schetter 1987). Assuming this to be so, the center- piece of prevention and intervention programs has been to strengthen systems of social support to enhance human adaptation in a variety of circumstances. Whether or not social support is consequential for mental health in any causal sense is now being questioned (Coyne & DeLongis 1986: 454). While well-being may be tied to supportive relation- ships, the linkages are thought to be complex, reciprocal, and contingent. The contextual situations that govern the relationship between perception of support and its supposed adaptational consequences need attention (Coyne & DeLongis 1986). Social Exchange Theory Aspects of social support can be conceptualized using social exchange theory. This theory stresses the mutual interdependency of people and proposes that one strives to maintain equity of exchanges in relationships (Blau 1964; Chadwick-Jones 1976; Gouldner 1960). Although equity is desired, there is a tendency toward imbalance (Chadwick-Jones 1976). Inequitable relationships over time will cause distress, and individuals will seek to restore equity in unbalanced relationships. Both the overbenefitted and the underbenefitted will feel stress (Stewart 1989; Tilden & Galyen 1987). While this theory may have some applicability in studying social support exchanges, there are additional considerations that need to be examined. The costs of receiving assistance need to be studied in closer detail. As well, the desire for equitable exchange may be differentiated on the basis of the type of social relationship, the timing of the assistance, and/or the specific type of assistance given (Rook 1987). Much of this work has been done in experimental laboratory settings and needs to be tested in field settings (Antonucci & Jackson 1990). How reciprocity operates within the context of specific situation needs to be further studied. Negative Aspects of Social Support Confounding the problem of inadequate conceptualization has been the implicit understanding that social support is, by its very nature, "good" or positive (Coyne & DeLongis 1986; Coyne, Wortman & Lehman 1988; Rook 1984; Wellman 1981; Wortman & Dunkel-Schetter 1987). Quantity of contact with others has been equated with high levels of social support, yet few studies look at the problems found in such contacts (Rook 1984). By focusing solely on the positive aspects of relationships, the negative elements of support and the uncertain and/or unsuccessful attempts to obtain support have been overlooked. In order for social support to be effective, it must meet the needs of the support recipient by decreasing the demands placed on the recipient, increasing resources or altering the consequences of failing to manage such demands (Woods, Yates, & Primomo 1989). Recent findings indicate that "supportive" interactions can result in significant stress and problems concurrently with providing much needed assistance (Cramer, Riley & Kiger 1991; Fisher et al. 1988; Tilden & Galyen 1987; Wellman 1981; Wortman & Dunkel-Schetter 1987). Problematic areas include a) differing perceptions of efficacy between the provider and the recipient, b) availability of social network members during a crisis, c) level of satisfaction (adequacy) with received support, and d) activation of support, the extent to which support is desired, needed, sought, or 21 received (Bloom 1982; Wortman & Dunkel-Schetter 1987). Social support can be seen as unhelpful when it serves to undermine self-esteem (Stewart 1989). In addition, the process of support is affected by contingencies that arise during the stressful event that precipitated the need for support. These contingencies include a) the amount of distress communicated; b) the nature of the topic and the help expected; c) both parties' responses to the stressor; d) and the restraints that each person's coping strategies place on the other's receipt of support (Gottleib & Wagner 1991:171). Reciprocity and Social Support Reciprocity involves the processes of giving, receiving, and repaying. Giving and receiving are essential elements of social support. In everyday social relationships reciprocity plays an important role by balancing obligations among members of social groups. Relationships characterized by either excessive giving or receiving (i.e., the situation of the parents of ill children) can be detrimental to the support process (Ingersoll-Dayton & Antonucci 1988). Wentowski (1981) studied exchanges among older people and found that the nature of the relationship was more important than age. Both equivalency of exchange and time of exchange were important factors. She also delineated types of recipro- city: immediate, deferred, and generalized. Superficial relationships used stricter rules of exchange and expected the 22 return of equivalent gifts in a shorter period of time. Intimate and longer term relationships allowed for non- equivalent exchanges over a longer span of time. Wentowski's work did not ask what happened if the recipient was unable to return the assistance. Similarly, Clark (1984) distinguished social relation- ships as either communal or exchange relationships. Communal relationships are closer relationships that have an implicit assumption that the parties in the relationship will be responsive to each other's needs in a general way. Exchange relationships are based on a pragmatic relationship in which assistance is offered in response to specific benefits received. Bruhn and Philips (1984: 155) hypothesize that the relationship between a person's level of functioning and the social support received is related to the degree to which the individual reciprocates social support. If support recipients feel that they are unable to return the benefit then social relationships can become strained. Perhaps more importantly, those in need of help may then be unwilling to seek help or accept offered support (Antonucci & Israel 1986; Stewart 1989; Woods, Yates, & Primomo 1989). There are some gaps in the conceptualization of reciprocal relationships when one considers a crisis situation, such as parenting a child with cancer. First, it is not solely a dyadic exchange. As noted before, it may 23 involve both kin and non-kin, as well as others outside the social network. Patterns of exchange occur that reflect both communal and exchange relationships. Therefore, long held expectations about the balance of support over a life-time in intimate relationships are pertinent to only some of the support providers. Support is an interactional process and recipients simply do not passively accept such assistance. But as Silver, Wortman, and Crofton (1990: 398) note, little attention has been paid to the recipient variable that may influence the provision of support. Rarely has the recipient been asked if they feel a need to reciprocate, and, if so, how would they do that? Reciprocity is difficult, if not impossible, to practice in the situation of parenting a seriously ill child. The time demands created by the illness and treatments are immense. Most parents have conflicting pressures between managing the illness and managing work responsibilities. Emotionally, many parents talk about being depleted of any extra energy with which they could do other things. In addition, siblings frequently require special assistance during this time. Relationship Between Social Support and Social Networks The source from which support is provided, i.e., the social network, is important in understanding how social support operates. Analysis of social network ties may be used 24 to describe characteristics and variables that constitute the opportunity for social support (Bloom 1982; Israel 1982; Maxwell 1982). Social Networks Social support does not occur as an isolated entity but rather it is derived from relations with members of one's social network. Social networks are a series of ties or social connections between individuals that vary in terms of structure and function (Heller & Swindle 1983; Mitchell 1986). Theoretically, social networks are representative of social structure and the web of ties of different sorts can link people throughout society, however remotely (Mitchell 1986). It is important to remember that social network boundaries are not fixed and static but, rather, fluid in response to situ- ational contexts, perceptions of one's social relationships, and even geographical distances and time (Jacobsen 1986). How the alteration of such boundaries affect the provision and receipt of support needs to be examined. For the purpose of this research I concentrated on a subset of the parent's total social network. The network has been defined narrowly as a personal (ego-centered) social support network. The network represents the ties between the parents of children with cancer and the individuals whom the parents identified as being helpful or important to them during the course of their child's illness. 25 Social network analysis has emerged from the study of sociometric analysis, British "Structural-Functionalism," and crisis theory (Moos & Mitchell 1982). Network analysts study social structure by analyzing patterns of ties linking its members and describing how these patterns influence or constrain social behavior (Mitchell 1969a; Wellman 1985). The emphasis of study is on examining the concept of ties linking nodes (i.e., persons, groups, organizations), the properties of such ties (density, dispersion, content, duration, etc.), and how resources flow across ties. Individual charac- teristics of persons (such as the ability to ask for help, degree of empathy, feelings of fear) may affect the flow of resources. Culturally specific beliefs and values also shape how resources are given and received within a network. How a network is defined (i.e., who is included in the network) may also be shaped by cultural beliefs (Jacobsen 1986). Differences in the features of social networks have been described as having structural, functional and interactional characteristics (Rounds & Israel 1985). Functional charac- teristics may include access to social contacts, maintenance of social identity, and the provision of affective, affirma- tional, and material aid (Rounds & Israel 1985). Structural components are size or range, network density, and degree of connection. Intensity, durability, multi-dimensionality, directedness and reciprocity, relationship diversity, 26 dispersion, frequency and homogenicity describe the interac tional elements (Mitchell & Trickett 1980). Network Research Findings The studies of social support and social networks are closely interwoven in the research literature. For a person experiencing stress, the existence and use of a social network hedges against the collapse of a single relationship. In addition, network members can offer consensual information and validation (Gottleib 1988). Networks that are diverse in nature and capable of providing multi-faceted support appear to enhance perception of support and social adaptation in various situations. Personal Networks Wellman (1985) studied a large community sample of working-class adults to discern the kinds of supportive resources flowing through a naturally occurring sample of ties and networks. His data showed a complex, multi-dimensional array of specific resource transfers with the most common categories of support being companionship, emotional aid and small services. The complex ties and resource transfers suggested variation in the type, extent, and breadth of social support available. Fisher et al. (1988) reviewed the literature and found that studies indicate that family members are chosen for 27 longer-term serious problems, while friends are chosen for short-term everyday problems. Friends may be seen as supplemental to the family, but not as a substitute. Other data suggest that one source of support does not compensate for another that is lacking (Coyne & DeLongis 1986). In an intensive ethnographic analysis of unmarried teen mothers, the better adapted teens displayed a more differentiated view of their social networks' taxonomic structure and perceived network members as more diverse in their capacity to offer various types of support. The results also suggested that support was best received from network members who are perceived to be permanent and enduring components of their social world (Boyce, Kay, & Uitti 88). Geographical Distances From Networks Sociological studies focused on the question of urban isolation have demonstrated that due to communication and transportation advances, urbanites are embedded in networks of supportive others that fall disproportionately outside boundaries of the immediate neighborhoods (Fischer 1982; Wellman 1979). Significant others may be a component of personal networks and yet live away from the contact person. While this paper is not a study of urbanites, an understanding of environmental determinants of networks can assist in interpreting whether geographical isolation from a network 28 (such as being away from home in the hospital) affects network response. Density of Networks Findings regarding density appear to be situation- specific, and somewhat contradictory. Some argue that dense networks are able to offer emotional support to a person in distress (Simmons 1994). For example, in family crises involving death of a parent, children cope better in high- density, close networks (Hammer 1981). Contrasting this, Granovetter (1973) notes that weak ties may be more useful in situations where linkages are needed outside the primary group, such as moving or job-seeking. Hirsch (1980) studied the adjustment of women in college and has found that dense networks were significantly related to greater symptomatology, poorer mood, and lower self-esteem. A series of studies was recently completed that compared parents of handicapped or chronically ill children to parents of healthy children (Kazak 1987a; Kazak & Marvin 1984; Kazak, Reber, & Carter 1988). Personal stress, marital satisfaction, and network size and density were compared across sets of parents. Stress was consistently found to be higher in the parents of handicapped children, especially for the mothers. Mothers of handicapped children were found to have higher density measures of their social networks, but when compared statistically, there were few significant differences between 29 groups with regard to the size and density of the parent networks. However, for both sets of parents, larger, less dense networks were associated with decreased experiences of psychological distress, particularly for the mothers. How- ever, the causal direction of this relationship is not known. While these studies did not focus on the experience of child- hood cancer, hypothetically these findings are applicable to the issue of dealing with chronic illness, such as cancer. The last section of this chapter focuses on the role of social support and social networks for parents of children with cancer. Although there is a vast array of literature pertaining to social support and adult cancer patients it will not be reviewed here. The support issues pertinent to adults experiencing cancer are vastly different from the issues confronting parents of children with cancer. Social Support, Social Networks and Cancer There is ample documentation of the turmoil and suffering experienced by a family when a child has been diagnosed with cancer (Bakke & Pomietto 1986; Binger et al. 1969; Chesler & Barbarin 1984, 1987; Fife, Norton, & Groom 1987; Futterman & Hoffman 1973; Moore, Kramer, & Perin 1986). Social support is just one component of people's lives (Jacobsen 1986) but there is broad agreement that social support is important in coping with this turmoil and suffering. 30 There has been limited attention to the role of support for pediatric oncology patients and their families, as compared with studies of adult patients with cancer. Perception of adequacy of support and satisfaction with support has not been discussed (Hamlett, Pellegrini, & Katz 1992: 36). Findings indicate that support plays a role in mitigating the stress of childhood cancer, although the studies suffer from a lack of attention to the social networks or other factors that might influence how support works (Fife, Norton, & Groom 1987; Lynam 1987; Magni et al. 1986; McCubbin et al. 1983). The Role of Social Support in Parenting an Ill Child As described previously, serious childhood illnesses, such as cancer, pose multiple cognitive, emotional, and physical demands on the entire family. Families cope not only with the stress of caring for their ill child, but also with life events such as illnesses/hospitalizations of other family members, occupational changes, financial concerns, moving, planning vacations, and deaths of other ill children or family members (Kalnins, Churchill, & Terry 1980). In response to this situation, members of the parent's social networks offer assistance. Networks expand to include strangers and communities who become involved in making the life of the family easier in a myriad of ways. In fact, family growth and survival during the period of treatment may 31 be determined by the family's abilities to mobilize and maintain their resources (Thoma, Hockenberry-Eaton, & Kemp 1993). Social support, both perceived and actual, is thus seen as an important coping resource for the parents (Huang 1991- 1992; Tunali & Power 1993). Parents seek support from a variety of sources and employ a broad range of coping stra- tegies to deal with childhood cancer (Chesler, Barbarin, & Lebo-Stein, 1984). Psychosocial adjustment in parents has been positively correlated with the amount of support received (Morrow, Hoagland, & Morse 1982). Kazak and Marvin (1984) suggest that informal sources of support are more critical to family well-being than are formal sources of support. Find- ings from other studies indicate that spouses, the medical community, and other parents from self-help groups are valuable sources of support (Barbarin, Hughes, & Chesler 1985; Lynam 1987; Morrow, Hoagland, & Morse 1982). Chesler and Barbarin (1984) note that parents' abilities to identify their need for help correlates positively with success in receiving help. Families with higher socioeconomic status (SES) used friends for support, while families with lower SES used health professionals. Other factors influencing family adjustment to childhood illness include economic resources, family communication patterns, marital adjustment, access to medical care, and parental perceptions of the child's illness (Clements, Copeland, & Loftus 1990). 32 Perceived social support continues to have a positive effect for parents of childhood cancer survivors. Parents experiencing low levels of perceived social support were significantly more depressed and anxious than parents of healthy children in one study. For mothers, the generalized perception of support is most important to psychological well- being. For fathers, a combination of the specific support offered by marriage and the generalized perception of social support is most conducive to well-being (Speechley & Noh 1992: 19). This chapter examines the role that social support plays in helping families deal with the experience of childhood cancer. It questions whether social support and assistance are always helpful processes. It delineates the differences between social support and social networks, and concludes with a review of social support specific to parents of ill children. The next chapter reviews the African American family, paying particular attention to the role of support in these families. CHAPTER 3 AFRICAN AMERICAN FAMILIES The subject of the African American family has received tremendous attention during the past six decades. Various theoretical paradigms have argued the origins and variability of the African American family. Some writers said that the African American family evolved into a unique cultural form as a response to racism, while others argued whether the African American family was a pathological institution. Still others argued whether the African American family was a variant on the white family. The literature remains weak in some areas regarding the study of African American families. In-depth ethnographies of African American families have not been written since the 1970s (e.g., Aschenbrenner 1975; Stack 1974). Recently, a few large, randomized studies have been completed which examine diverse phenomena affecting African American family life (Taylor, Chatters, & May 1988; Taylor 1990). It is not known whether contemporary societal conditions have overwhelmed the African American family to the point that years of tradition of extended assistance npw fall short. Are problems so severe now that available help has been depleted? If so, what happens when a catastrophic event, such as childhood cancer, 33 34 faces a family? To whom do they turn? Is there a difference between African American and white families facing this issue? I argue in this chapter that the African American family survives as a viable institution with its own norms and expec- tations. Family structure and the family's ability to provide assistance have altered in the face of years of racism, denied social and economic opportunities, and a deteriorating social environment affecting both the dominant white culture and the African American culture. This chapter examines the African American family from a variety of perspectives. The literature on the African Amer- ican family is voluminous. The chapter concentrates on those topics most relevant to the dissertation research. First, it is necessary to determine historically the social forces that shaped the family organization before one can question the viability of the family. Therefore, the history of the African American family as an institution from slavery to modern times is briefly described. Major theoretical para- digms are discussed regarding the structure and viability of African American family life. The final section of the paper focuses on African American family social network research. Extended family support is seen as a strength of the African American family. Extant literature is reviewed regarding how and if social support is received from members of the extended African American family and others. Intra-cultural variation regarding social support and characteristics of social 35 networks for both African American and for white families is a crucial component of the dissertation. Historical Review of the Social Forces Shaping the African American Family The Period Of Slavery Slavery challenged the resilience of both individuals and families. Individuals suffered multiple losses loss of a homeland, customs, and emotional attachments to the land and to people left behind; loss of freedom and dignity; and, for some, loss of life. Scholastic arguments developed regarding how African American men, women, and families responded to the conditions of slavery. A prominent argument stated that the demise and disorganization of the African American family began in the wretched conditions of slavery. Families disbanded; sexual mores did not exist; and women ruled the slave family with little need for or regard to the slave man. Proponents of this argument held that slavery was the first step in a long process of family disintegration (Frazier 1939; Harris 1979). Not only did slavery destroy the family, according to this argument, slavery also served to strip African American families of all their cultural heritage and customs. Frazier (1939) argued that enslavement erased any perpetuation of African kinship and family relations. Conditions of life in America destroyed the significance of an African heritage, and 36 new habits and attitudes formed to meet the new situations (Frazier 1957). Family life during slavery was portrayed as non-existent due to the selling of children, the separation of kin as slaves arrived in America, and the emasculation of the African American male. The African American woman was seen as the most dependable and most important member of the family. Frazier's description of slave life was harsh and focused attention and blame on the slaves. He described a loss of morals and wanton sexual behavior of the slaves, particularly men. Contrasting the belief that slavery eroded the family, others argued that the family as an institution survived. Family life was important; attachment between slaves was real; and thousands of slaves fled in search of missing family members (Franklin 1988a). Gutman (1976) destroyed the myth of the dissolution of the African American family during slavery. He studied records from enslaved African Americans, their children and grandchildren, and showed how they adapted to enslavement by developing distinctive domestic arrangements and kin networks. Those networks fostered a new Afro-American culture. Using census data from various cities (1880-1925), Gutman demonstrated most African Americans lived in nuclear families, regardless of social class, and that the two-parent family was the dominant form. He further argued that current family and kinship patterns originated during slavery, and that these 37 practices reflected an African heritage. Slave conceptions regarding marital, familial, and kin obligations were passed from generation to generation by slaves in marriages of long duration. Extended kin networks revealed one aspect of the adaptive capacities of the slaves and their offspring. This study was critically important in addressing the question of whether the institution of the African American family had survived. African Influence According to many authors, African heritage played a prominent role in the survival and adaptation of the African American family during slavery and afterward as well (Foster 1983; Herskovits 1958; Martin & Martin 1985; Sudarkasa 1988). However, this view is not universally accepted. In the 1957 revision of Frazier's book (1939), he continued to espouse that it was difficult to establish any factual linkage between the African family system and the African American family. More recently, Martin & Martin (1985) said that the brutality of slavery was, in itself, a force against the perpetuation of former cultural traits. African slaves came from diverse tribal backgrounds and did not share a common language. Slave masters fought against the retention of cultural traits, and mere survival, at times, forced slaves to forego their efforts to maintain their culture. 38 Yet, in spite of the forces that militated against retaining African traditions, aspects of slavery worked to foster humanistic values and patterns of assistance (Martin & Martin 1985). Helping traditions were deeply rooted in African culture, and non-institutionalized aspects of culture were maintained more easily than other cultural ways. The slave system demanded cooperation to ensure survival. Slaves established their own community structures in the slave quarters during the few hours when they were not working for the masters. Leaders arose and attempted to maintain the spirit of life as previously known in Africa. In short, oppression led to patterns of assistance necessary for day-to- day existence (McCray 1980). DuBois (1908) was the first scholar to urge the study of the African American American family against the background of its African origins (Sudarkasa 1988). African cultural traditions that were carried to America and transformed by subsequent years of slavery and oppression included fictive kin, extended family networks, marriage rules and rituals, consanguineal kin groupings, husband-wife relations with complementary and egalitarian roles, patterns of respect and deference, socialization practices, and corporate identity (Foster 1983; Martin & Martin 1985; Rodgers-Rose 1980; Sudarkasa 1988). Although enslaved Africans came from different West African tribal groups, some features of kinship organization 39 and social institutions were commonly held (Sudarkasa 1988). Patriarchy and polygyny figured prominently in African life, and an individual could not place his or her personal interests above those of the group. In many groups, lineage membership was passed through women and women held important instrumental and economic roles, particularly in regards to bearing and raising children.' The universality of African practices, values, and institutional arrangements aided American slaves in establishing family organization during slavery (Foster 1983; Sudarkasa 1988). The African principles of respect, restraint, responsibility, reciprocity, and a commitment to the collectivity provided a basis from which African Americans would establish extended family networks during slavery. The specific forms the networks took reflected the political and economic circumstances of the enslaved populations, as well as the influence of European- derived institutions (Sudarkasa 1988). Emancipation Through the Early Twentieth Century The Civil War and Reconstruction presented new problems and challenges for the African American family.2 Free African Americans assisted in the freedom fight for others by their 'For more in-depth discussions of African practices and their integration into African American life, see Foster (1983) and Sudarkasa (1986). 2For a historical review of African American life in American society, see Franklin and Moss (1988). 40 efforts in the Underground Railroad. Kin consciousness extended to racial consciousness with the awareness of the plight of all African Americans. Free African Americans normalized the natural helping traditions of the slaves (extended family and fictive kin) establishing churches, benevolent societies, fraternal orders, and schools (Franklin & Moss 1988; Martin & Martin 1985). The resiliency of African American families was shown through their efforts during Reconstruction to unite with lost family members, to establish legitimate marriages with legal marriage contracts, and to foster and adopt orphaned African American children (Franklin & Moss 1988; Gutman 1976). Sharecropping perpetuated poverty. Though mired in debt, subsequent generations were tied to family land, and forced to depend on relatives for survival (Martin & Martin 1985; Rodgers-Rose 1980). Sweeping social changes occurred at the turn of the century with the transition from agriculture to urban indus- trialism. European peasant immigrants competed for jobs; the Great Depression hit; and, hoping to find better oppor- tunities, southern African Americans migrated by the thousands to the northern urban centers. The agrarian system of the rural South was exploitative and limited the opportunities for advancement of African American families. Large extended families were an economic necessity. As the migration took hold, families continued to 41 extend as they adjusted to social and economic conditions in the cities. Although social welfare programs were introduced in the New Deal, African Americans continued to face overwhelming social injustice and lack of opportunity (Harris 1979; Foster 1983; Franklin & Moss 1988; Martin & Martin 1985). The brief historical review is important for several reasons. First, the family as a social institution cannot be understood in isolation. From slavery to contemporary times the political, economic, and social climate of the country has alienated African Americans and hindered opportunities. Racist ideologies and discriminatory practices, such as segregation, are simple examples of the many forces affecting the African American family. Second, the historical sequence provides insight on the establishment and importance of African American family organization, in spite of tremendous outside pressures against its formation. From the beginning of African American family life in America it is clear that mutual support from established extended networks has been a core tradition and value. Environmental conditions mitigated against individualism and fostered cooperative patterns to insure group survival. The collective, extended nature of family life would later haunt the African American family as critics argued that such a form was counter to the norm and, thus, pathological. Third, understanding the impoverishment of the African American community, the effects of rural-urban 42 migration, and the limited economic opportunities for African American families sets the stage for reviewing the conflicting models of the contemporary African American family. Families everywhere--African American or white, national or international--must adapt continuously to changes in the larger society and its institutions by modifying their structures and functions (Berardo 1990). A key issue that has been fought, and continues to be fought, is whether African American families are adaptable and resilient, or whether external forces have weakened the family to the point of collapse. I believe that history shows the adaptability of the African American family. The next section presents the contemporary arguments between the paradigms of the cultural- deviance model versus the resilient-adaptive model. The resilient-adaptive model is the stronger. The last section of the chapter on African American networks and social support exemplifies the adaptability of the African American family. The Viability of the African American Family Many writers have questioned the very existence of the African American family as an institution over the past 50-60 years. The issue raised was ". is family and household structure in the African American community indicative of 'social disorganization,' or are distinctive features of Afro- American domestic groups adaptations to economic marginality and oppression?" (Dressler, Hoeppner, & Pitts 1985: 853). 43 As the debate raged, more subtle questions emerged regarding the extent to which the African American family and community life reflected traditional African values and practices; whether the issue of African American family structure pertained more to class differences than racial differences; and what the causes were for apparent racial differences regarding family functioning. The two major paradigms that emerged were the following: a) African American family life is disorganized and patho- logical (the mainstream view); and b) African American family life is an organized, logical approach to oppression (the dissenting view). The models will be discussed separately. Cultural Deviant or Pathological Model The pathological model (also referred to as the "cultural ethnocentric school," Dodson 1988) saw the family as unable to provide the social and psychological support necessary for full assimilation into the dominant society. White middle- class family values were considered the societal norm. African American marriages were seen as the most fragile of conjugal units, and the African American woman/mother was depicted as the core of a matrifocal society. E. Franklin Frazier (1939) studied race relations and the process of how African American families were culturally assimilated into white society. He attributed variations in sexual and marital practices to a) matriarchal characteristics 44 of the family, whereby males were marginal; b) the lack of legal marriages in slavery and casual sex as a norm causing later marital instability patterns; and c) urbanization as a force in the dissolution of family life (Staples 1986; Stewart 1990). He believed that contemporary family organization traced back to slavery and to the influence of American culture, not to African cultural transfers (Dodson 1988). Contemporary with Frazier, African American intellectuals, such as W.E. DuBois, urged assimilation and stressed the need for the African American family to adopt norms held by white, middle-class families. The model applied to writers of this persuasion was called the "Cultural Equivalent" model. This model depicted African Americans as legitimate when they adopted the lifestyle and norms of middle-class whites (Johnson 1988). (This was also the time that the Structural/Functionalism ideology was popular. Conservatism was accepted social patterns were identified and reasons were created to justify those patterns. Process, change and individual responses that were outside of the mainstream were not valued in this paradigm.) However, writers during the 1940s-50s challenged the idea that the African American middle-class was economically secure and better assimilated (Harris 1979). This period led to the more scathing studies of the 1960s .the period of the African American family seen in negative, pathological terms. 45 Best known of this genre is Moynihan's report (March 1965), The Negro Family--The Case for National Action. The same themes as discussed earlier were repeated; the African American community was characterized by matriarchy, broken families, economic dependency, and delinquency and crime. Moynihan described the African American community as a "tangle of pathology" and identified the fundamental problem as the crumbling family structure. The matriarchal structure was inconsistent with American society, and African Americans were disadvantaged as their values were not in line with the dominant societal values. Moynihan's report was linked to the "Culture of Poverty" thesis (Lewis 1966). The "culture of poverty" described the lower-class poor as having limited ability to defer gratification, having high incidence of material deprivation, weak ego structure, and lack of impulse control. African Americans were both the victims of and were blamed for their misfortunes. Moynihan's central recommen- dation urged the national government to set a goal of establishing a stable Negro family structure. This implied structural changes in the family, replacing African American familial features with characteristics emulating the white middle-class the so-called "functional normative model family" (Dodson 1988). (The prevailing social climate during this period was one of unrest, challenging the status quo, and resisting the established societal structures. The Civil 46 Rights movement had gained momentum and was seen as challenging and frightening in much of the dominant society.) Cultural Relativity or Cultural Variant School Responding sharply to the negative, victim-blaming stance of the previous work, critics of the pathological model lauded the African American family as a functioning entity in its own right. The cultural relativity model proposed that the African American family was a culturally different family form, nondeviant, with values and family patterns instrumental for combating oppressive racial, political, and economic conditions of American society (Billingsley 1968; Dodson 1988; Herskovits 1958; Hill 1972; Johnson 1988; Shimkin, Shimkin, & Frate 1978; Stack 1974). Aschenbrenner (1975) described the African American family as a cultural institution with a long tradition whose social organization was created in the face of adversity, and not merely adjustment to contemporary urban conditions. Focusing on family strengths, this framework proposed that the African American extended family and domestic units adapted to economic marginality. Historical forces were inimical to family formation and maintenance. Judged against alien norms, social roles in America demanded variability from the African American family in order to survive (McCray 1980; Staples 1985). Structural transformation of the economy from industrialization to a service oriented market, with an 47 emphasis on high technology, and a dismantling of a welfare state were seen as responsible for African American family problems--rather than blaming the victims (Ladner 1986). Collins (1989) sharply criticized Moynihan's report implicating the African American family as the source for creating deviant societal values that ". in turn, collec- tively shape African American cultural deficiency" (p. 877). She and others contended that Moynihan neglected the manner in which racism and political and economic factors shape indi- vidual and/or group accomplishment (Collins 1989; Ladner 1986).3 Countering the earlier importance placed on attitudes and values as primary predictors of economic achievement, contem- porary family scholars place environmental restraints on mobility and achievement as a primary problem. Analyzing census data, Farley & Allen (1987) claim that the majority of African Americans in the United States remain separate and unequal because a legacy of African American subjugation remains. The subjugation is seen in persistent racial inequalities in educational achievement, family structure, occupational attainment, patterns of unemployment, income levels, residential segregation, and distribution of wealth. While declamations of the dominant society are assimila- tionist, political/economic/social structures remain committed 3Rainwater and Yancy (1967) provide a more complete analysis of the events leading to and after the publication of the Moynihan report. 48 to exclusionary practices and continued subordination of African Americans (Jaynes & Williams 1989; Young 1989). Adaptive Responses to Society The question becomes "what are the strengths and coping strategies used by the African American family to counter such obstacles?" The most discussed strength is the strong sense of obligation to kin and the extended family structure (Aschenbrenner 1975; McAdoo 1978; Stack 1974). Consanguinity assumes primacy over affinal ties. As compared to white middle-class families, the marital tie does not hold the same status for African Americans. This is not to imply that marriage is unimportant. The importance of marriage ties has been shown from historical data. The statement is meant to imply a cultural difference surrounding the meaning of marriage. Commitment to motherhood is strong, whether or not the mother is married, and there is a recognition that children may not be raised necessarily in an intact family (Aschenbrenner 1975; Peters & Massey 1983). Role flexibility may allow for stability in the one-parent family by having extended relatives play the role of the absent parent (Foster 1983). Extended kin ties are reinforced and maintained through space and time by participation in rituals such as funerals, family reunions, and regular visiting patterns (Aschenbrenner 1975; Barnes 1981; Foster 1983; Stack 1974). 49 Contrary to the popular, stereotypic image of African American men as absent from the family, African American men are an important aspect of family life playing different roles in the family organization. Women have participated in the labor force since slavery, and gender roles have evolved in a more egalitarian fashion (Foster 1983; McCray 1980; Taylor, Chatters, Tucker, & Lewis 1990). Men may not support children as a matter of course but are generous if asked (Aschenbrenner 1975). A review of recent literature indicates that African American men are highly involved in parental and childrearing roles (Taylor, Chatters, Tucker, & Lewis 1990). Hill (1972) summarized the following characteristics as strengths common to African American families: strong kinship bonds, strong work orientation, adaptability of family roles, strong achievement orientation, and strong religious orien- tation. While also seen in white families, Hill argued that these traits are manifested differently in African American families due to their history of racial oppression. Other values cited as strengths include a belief in the institution of the family, motherhood, and childrearing; an emphasis on strict discipline and respect for elders; and the necessity for caring roles and mutual aid systems (Aschenbrenner 1975; McCray 1980; Staples 1985). In a recent study focused on middle-class African Americans, core characteristics and values included an implicit or explicit embracing of the dominant culture; delay of gratification; a strong sense of 50 self and empowerment; a sense of importance in the fact of their Blackness; and quality of life pursuits (Coner-Edwards & Edwards 1988). Contemporary Family Organization Societal Trends Affecting Families In spite of the strength of African American families, family organization and structure have changed over the past 20-30 years. It is important to remember that larger societal trends, such as an increased rate of divorces and a shifting of emphasis away from familism toward individualism affected both African American and white families. In a decade review of family research in the 1980s, Berardo (1990) noted a renewed concern that family and marriage institutions were being severely weakened and threatened from accelerated and pervasive social change. The African American family was at double risk exposure to those societal threats shared by whites and African Americans coupled with continued oppression and racism. Major demographic trends identified in the literature include higher divorce rates, declining rates of marriage, later ages at first marriage, larger percentages of children living in female-headed families, higher percentages of children living in poverty, an increase in female-headed families, and a higher proportion of births to unmarried mothers (Jaynes & Williams 1989; Wilson 1987). African 51 American families, particularly the growing African American underclass, have disproportionately suffered from these trends (Jaynes & Williams 1989; Taylor, Chatters, Tucker, & Lewis 1990; Wilson 1987). For example, African American female heads of family are less likely to marry if single, or to remarry if divorced or widowed. Female-headed white families are of shorter duration than African American female-headed families (Wilson 1987). Between 1969 and 1987, the jobless rate of African American husbands more than doubled (from 2.9% to 7.0%). During the same period of time, the number of unemployed African American husbands almost tripled (from 84,000 to 209,000) (Hill 1990: 87). There are vast economic differences by race with African Americans disproportionately over-represented among the poor. Female-headed families are at the most profound economic disadvantage, with African American female-headed families being twice as likely to have poverty-level incomes than white female-headed families (Jaynes & Williams 1989). In 1992, 13% of all families had incomes below the poverty level. For white families the poverty rate was 9.8%, compared to 32.7% for African American families (US Department of Commerce 1993a: 2-3, Table 2). Female-headed families with related children under 18 years of age below the poverty level differed sharply by race: 42% were white and, 68% were African American families (US Department of Commerce 1993: 93-94, Tables 93-94). The 1993 figures showed an even greater 52 disparity, with 30.9% of African American families below the poverty level, compared to 8.9% of white families (US Bureau of the Census 1994: 48, Table 49) (Based on constant 1992 dollars). Poverty rate for all children under 18 in 1992 was 21.9%, with African American children representing 34.6% of all poor related children under 6 years of age. For children living in female-householder families, 73.1% were African American, compared to 60.5% white and 71.8% Hispanic-origin (US Department of Commerce 1993b: x). Causative Factor for Family Structural Changes Throughout this chapter, I argue that social forces directly impinge on the functioning of the family. The contemporary African American family is also subject to these forces. One must ask: What accounts for racial differences between African American and white family patterns? Two major explanations have been offered: a) systematic and persistent differences exist because of differing cultural norms; and b) differences are due to economic factors (Farley & Allen 1987). Arguments pertaining to the cultural norm explanation were presented earlier in the section describing different values held by African Americans, particularly in regards to marriage and gender roles. Additional support for the cultural explanation arose from an analysis of the 1980 census data. Independent of 53 household income, race was related to household extendedness. This patterns was seen for African Americans, Hispanics and Asians. A proposed explanation was that benefits from extendedness may go beyond economic benefits to include childcare, household help, and companionship (Farley & Allen 1987). However, due to the type of data used in the study, it was impossible to verify values and attitudes regarding extendedness that might play a role in this finding. Economic and structural factors have been strongly implicated in several studies. In an extensive study on the position of African Americans in American society since the eve of WWII, the most salient factors explaining racial differences in family structure were differences in income and employment, greater (relative) economic independence of African American women, and a more limited pool of African American men who are good marriage prospects (Jaynes & Williams 1989). Staples (1985) agreed with the premise that for African American women, the quality of potential mates was poor due to fewer African American men obtaining gainful employment. Higher rates of male unemployment were due to a) changes in the work setting (i.e., service orientation, less industry), b) greater competition with white women for jobs, c) increased functional illiteracy in men secondary to the reality of blocked opportunities, and d) less access to the personal networks used by white men to secure employment. Using a "male marriageable pool index" (MMPI), Wilson (1987) 54 argued that the sharp rise of African American female-headed families directly related to increasing African American male joblessness. Additional factors cited in the literature as contri- buting to alterations in family structure have included: a) increased societal acceptance of non-marital sex, b) increased use of abortion and birth control, c) a welfare system that requires men to be absent, d) decreased self- esteem of African American men related to economic/psycho- logical alienation, e) longer duration in poverty for African American families, f) increased incarceration of African American men in prison and mental institutions, g) a long- standing African American male shortage resulting from differential mortality rates, and h) fewer opportunities to create stable African American family homes due to decreased economic opportunities (Jaynes & Williams 1989; Ladner 1986; Taylor, Chatters, Tucker, & Lewis 1990). The question regarding African American/white differences in family structure is not answered solely by the cultural or the economic explanations. Rather, both explanations appear to contribute to the observed differences (Tienda & Angel 1982; Farley & Allen 1987). Analysis of the 1980 census data indicates that race differences in family organization diminished as economic differences by race lessened. "African American-white differences in economic well-being, political power, and social standing--more so than differences in values 55 and predispositions--explain the observed race differences in family organization and process" (Farley & Allen 1987: 187). Clearly, African American family organization reflects differing historical circumstances, cultural values and practices that are suggestive of African heritage, and current socio/economic/political forces that have created multiple barriers to opportunities. The resources and strengths of the African American family is seen in its survival and resilience. The last section of the chapter specifically addresses the topics of social networks and patterns of support for African American families. Social Networks and the Provision of Support Social network analysis developed with Elizabeth Bott's work in England (1957) and J. Clyde Mitchell's work in Africa (1969b). How network members provide support to others has continued to be a topic of interest for anthropologists and sociologists. Much of the work on network composition and the provision of support has focused on kin ties. However, two distinct research agendas emerged one concentrating on the white family and one concentrating on the African American family. The African American literature concentrated on patterns of assistance from kin, and support was viewed for the most part as instrumental (Aschenbrenner 1973; Ball 1983; Stack 1974). Existence of mutual help was considered from the perspective of extended kin buffering the family from economic 56 disparities, and from the perspective that there was a greater cultural emphasis on kinship among African Americans (Malson 1982). Therefore, stronger kin ties should be found at all socioeconomic levels. The literature that focused on whites took a broader perspective, looking at support provision in a variety of situations (Antonucci & Depner 1982; Bott 1969; Fiore, Becker, & Coppel 1983; Hammer 1981; LaRocco, House, & French 1980). For both races, few studies have examined the different aspects of support (such as emotional support, instrumental support, and perception of support from network members) concurrently. Until recently, even fewer studies compared differences between African American and white networks. Social Networks of African American Families Attention has turned again recently to the "demise" of the African American family with much emphasis being placed on the trends of single-parent families, poverty (particularly in regards to the effects on children), absent fathers, and environmental deprivation that may be weakening the extended family's ability to assist others (Billingsley 1990; Jaynes & Williams 1989). Yet there is minimal research that investigates whether support is adequate or available to families facing unexpected, long-term crisis situations, such as in the case of chronic childhood illness. 57 Social network research with African American families has focused predominantly on urban, lower class, extended families (Aschenbrenner 1973; Hays & Mindel 1973; Lindblad- Goldberg, & Dukes 1985; Martineau 1977; Stack 1974). An occasional study used rural populations (Dressler 1985; Gaudin & Davis 1985; Hofferth 1984) or middle-class African American families (Barnes 1981; McAdoo 1978). Research questions asked whether African American family life existed in urban, ghetto areas and whether the ties between members of extended families served to buffer individuals against the severe effects of racism and poverty. Extended Families There has been a strong emphasis on the value of extended families for African Americans. It has been believed gener- ally that African American families have supportive extended families and kin ties that are lacking in white families. Ethnographic research has documented the strength of these extended families, and detailed the extensive exchange patterns between kin and friends in which members of extended households shared economic aid and other forms of instrumental assistance, such as housing, resources, and household tasks (Aschenbrenner 1973; Stack 1974). Fictive kin were as important as blood kin in the provision of support (Johnson & Barer 1990; Scott & Black 1989; Stack 1974; Ulbrich & Warheit 1989). 58 Stack (1974) interpreted these exchange networks as a resilient response to the socioeconomic conditions of poverty and unemployment. Economic deprivation mitigated against the maintenance of nuclear families. Extended families were described as having expanded units of reciprocity, thereby being more flexible economic units (Aschenbrenner 1973). Extendedness is recognized as an effective mechanism for pooling limited resources, hence increasing economic benefits (such as stability, access to a wider pool of resources). "Doubling up" in extended households is generally a less expensive method of providing for needy relatives, as compared to direct cash transfers (Taylor, Chatters, Tucker, & Lewis 1990). McAdoo (1978) found similar behavior in a study of African American middle-income, urban and suburban families. Her research indicated that extended help patterns are culturally rather than solely economically based. She extended the study in 1980 to ascertain whether the mother's differential involvement within her wider family was based on whether she was head of the household or if she was married. Her findings indicated that both single and married mothers were deeply involved in the kin-help exchange networks, including the use of fictive kin. Additional research confirmed that marital status did not alter sources of support or satisfaction with support (Brown & Gary 1985; Taylor 1986). 59 Family members and extended kin remained major sources of support after divorce (Brown & Gary 1985). Later and larger, representative studies also indicated the importance of kin ties to receiving support (Hatchett & Jackson 1993). Frequent interactions with family members, close familial relationships, and having an available pool of relatives predicted the probability of receiving support, regardless of gender (Taylor 1986). A more recent study compared the level of familial involvement between adults labeled as support-deficients (those who had never received assistance) and self-reliants (those reporting they had never needed help). Findings from multivariate analysis indicated the self-reliants reported significantly higher familial involvement (Taylor 1990). Findings from the representative National Survey of Black Americans (NSBA) indicated that there was an overwhelming perception of family solidarity among African Americans. Geographical distances to both immediate and other kin members were fairly close, and frequented aid from kin was reported, Women reported more receiving more aid than did men, as well as having more frequent interactions with kin. Summary of the findings indicated that subjective closeness with kin was the most influential predictor of frequency of interaction with kin, and aid received from kin (Hatchett & Jackson 1993). The Consequences of Support and the Need for Reciprocity Although aspects of support were beneficial, there were negative consequences to receiving assistance. Failure to reciprocate harmed kin and non-kin relationships and sometimes resulted in shunning or ostracism (Scott & Black 1989).' Help obligated the individual to a pattern of reciprocal assistance which, at times, had the negative effect of limiting potential opportunities for upward mobility (Stack 1974). Belle (1982) found that although mutual aid networks were critical survival strategies against poverty, the networks were not voluntarily chosen by those who could find other means for escaping the effects of poverty. Increased emotional distress and stress have been reported in women participating in networks with extensive social ties (Belle 1982; Lindblad-Goldberg & Dukes 1985). Informal Ties Findings from network studies of African American families documented active networks of informal ties to non- residential kin, friends, and neighbors (Ball 1983; Belle 1982; Martineau 1977). Ball (1983) found that requests for assistance with a real problem were as frequent to friends as to kin outside the family. Higher levels of SES were 4Reciprocity and its relationship to the receipt of support is detailed in "There Are No Free Gifts! Social Support and the Need for Reciprocity" (Williams, In press). 61 associated with larger networks and the probability of receiving support (Campbell & Lee 1990; Taylor 1986, 1990). Network studies began to use representative, national survey data to re-evaluate the importance of extended kin and friend ties. During times of crisis, immediate family members were heavily relied upon (Taylor, Chatters, & May 1988). Other studies noted the importance of both formal and informal helpers (non-professional helpers, notably non-kin, immediate and extended kin), with the mother being the most utilized category of informal helper (Neighbors and Jackson 1984; Chatters, Taylor, & Neighbors 1989). These findings contrasted with the earlier ethnographic work of Aschenbrenner (1975) and Stack (1974). The unrepre- sentativeness of the ethnographic accounts might account for the discrepancy. The ethnographic studies also focused more on everyday life rather than on serious personal problems. Definitions of what constitutes a "serious problem" may also account for variation. Comparisons Between African American and White Social Networks Findings in the literature are inconsistent regarding the differences between provision of support for African American and white families. Some studies documented larger kin networks for African Americans as compared to whites, (Ball, Warheit, Vandiver, & Holzer 1979; Cross 1990; Gaudia & Davies 1985; Hays & Mindel 1973; Hogan, Hao, & Parrish 1990). The 62 larger kin networks appeared to provide greater amounts of assistance (Hays & Mindel 1973; Hogan, Hao, & Parrish 1990; Johnson & Barer 1990). Compared to elderly whites, elderly inner-city African Americans expanded their networks by mobilizing relatives on the periphery of the kinship network (nieces, nephews and cousins), and created fictional kin (Johnson & Barer 1990). For some situations, the greater amount of help was associated with a more pronounced tendency for African Americans to be living with adult kin (Hogan, Hao, & Parrish 1990). Constrained social opportunities and unequal access to resources were cited as factors related to stronger helping African American neighbor networks (Lee & Campbell 1990; Lee, Campbell, & Miller, 1989). However, the assumptions that African Americans receive more support than whites and have larger kin networks have not been universally reported. Silverstein and Waite (1993) failed to confirm previous studies that suggested a support advantage for African Americans with economic and social variables controlled. Using representative data from the 1985 General Social Survey, Marsden (1987) looked at the aspects of interpersonal networks in which Americans discuss "important matters." Overall findings indicated that the networks are small, kin-centered, relatively dense, and homogeneous. Whites had the largest networks (mean size 3.1), African Americans the smallest (mean size 2.25), and Hispanics and others fell in between. Cross (1990) compared the social 63 networks of a national sample of African American, white, and ethnic-white mothers. Ethnic-white mothers had the highest number of kin in their networks overall, followed by white mothers, and then African American mothers. This held for both one-parent and two-parent families in all three groups. In a study of parents of chronically ill children, Williams (1993) compiled social network inventories of those individuals important or helpful to the parents during the time of their children' illnesses. The networks of white parents were twice as large as those of the African American parents, although the African American parents perceived the individuals in their networks to be slightly more supportive. In a national sample of rural, low SES mothers, African American mothers had greater numbers of kin in their networks, and the networks were more durable, but those networks provided less help and fewer persons to call on than did white networks. These African American mothers perceived and received less support from informal social networks (Gaudin & Davies 1985). Similar results were found in another nationally representative sample of African American and white American mothers (Hogan, Hao, & Parish 1990). Matching African American and white samples on marital status and kin proximity, African Americans received less substantial income support than whites. Although African American mothers received free child care from co-residential kin, only 1/3 of African American mothers, compared to 2/3 of white mothers, 64 reported adequate access to child care. In another study, requests for assistance with major problem resolution were seen more in whites than African Americans, although African Americans were more likely to have a geographically proximate close relative than were whites (Ball, Warheit, Vandiver, & Holzer 1979). A possible explanation was that whites may have perceived greater resource availability for them than did African Americans. Relationship Between Patterns of Support and Family Structure The variable of family structure appeared to play a determining role in the provision of support for African Americans and whites. Cross (1990) found that African Ameri- can two-parent mothers were similar to ethnic white two-parent mothers in the areas of financial, emotional, and work-related support. In the areas of practical, financial, and emotional support, white two-parent mothers received the most support. In contrast, African American single mothers were the most disadvantaged of the three groups in all functional areas of support. For African American single mothers, the level of need outstripped the level of support. Hofferth (1984) argued that the apparent relationship between race and extendedness was due to family structure differences between African American and white female family heads. Using a national sample, she defined kin participation narrowly on the basis of exchange of finances and/or extended 65 living arrangements. White single parents participated in kin networks more than African American single parents, but the relationship was weak. African American two-parent families were more likely to participate in kin networks than white two-parent families. White families were more likely than African American families to receive money from kin, regard- less of marital status. African American female-headed families were less likely to receive financial assistance than white female-headed families. Thus, they appeared to benefit less from a kin network than white female-headed families. Helping Traditions in African American Communities As has been seen throughout this chapter, the practice of mutual aid has been an integral component of African American lives from slavery to modern times. The helping tradition has extended historically from the family through a religious consciousness, fictive kin, and a racial consciousness to permeate all areas of life in the African American community. This is now under scrutiny. Martin and Martin (1985) cite the following factors as contributing to the demise of mutual aid: a) decreased male/female cooperation, b) a lack of reinforce- ment of helping values by the schools or wider community, c) bourgeoisie (individualistic, social-status seeking) and street ideologies fighting against the values of helping, d) a decline in racial consciousness making it difficult to trans- fer helping values, and e) a historical decline of self-help 66 traditions after the initiation of social welfare programs started in the New Deal era. Their argument runs counter to much of the previously cited work that shows the existence of the helping tradition. Further studies are needed to identify if, given the contem- porary social problems, mutual aid patterns are effective in protecting individuals from institutional assaults beyond their control. Assistance continues to exist, but to what degree? Additional data are also needed to determine whether patterns of support occur within each social class and for each household type. Income appears to assume a primary role in determining patterns of support, but this area of consi- deration is new and needs further study. Conclusions Research on African American families is difficult to summarize. Studies have used different methods and different data bases. Only recently have studies begun to use large representative samples. The problem is that, for many of those studies, the data were collected for purposes other than the intent of the subsequent analysis. For example, census data do not answer questions regarding attitudes or need. Few studies have combined quantitative and qualitative methods for a broader perspective on issues such as network functions and importance of network ties. 67 The African American family as an institution cannot be studied in isolation. Macro and micro level influences must be examined together. In spite of the problems and historical challenges addressed in this chapter, the African American family is alive and viable. There is great diversity in the family unit and such diversity as social class status and household type must be considered while examining any phenomena pertinent to family life. Research must concentrate on individuals in all social strata and not be lured into focusing on the problems most visible, such as the extreme poverty of the underclass. To do so would imply that there is a "standard" African American family. This chapter focuses on describing the contemporary African American family. It reviewed historical social forces that impacted family life, described theoretical paradigms regarding the structure and viability of African American family life, and summarized research concerning the provision of support from social networks. Whenever pertinent, it compared the African American family to white families. The next chapter concludes the literature review section. It reviews the literature on coping and offers a detailed description of the theoretical framework used for the dissertation research. CHAPTER 4 COPING Although the term "coping" is used a lot, few people agree on what it is, how it works, and particularly, how to measure it. In this chapter I review part of the litera- ture--the part most germane to my research. I follow the transactional model of stress and coping proposed by Lazarus and Folkman (1984). In their model, coping is a process separate from its outcomes. I argue against the traditional stance in anthropology that defines coping implicitly as a successful outcome. First, I present Lazarus and Folkman's model and findings pertinent to the model. Next, I summarize research on how families experiencing childhood chronic illness appear to cope. In the final section I offer a critique of the literature. Review of the Literature Coping: Definitions in the Literature It is an understatement to say that coping is poorly defined in the literature. Social support, another frequently-used construct, suffers from a plethora of 69 definitions and typologies, while studies of coping often lack any definition at all (see Table 4.1). It is assumed that the reader knows what coping is and which dimensions of the construct are being measured. There are notable exceptions. Table 4.2, "Comparisons of Coping Definitions," shows examples of how coping has been defined. The most frequently cited definition is that offered by Lazarus and his colleagues (Folkman 1984; Folkman et al. 1986; Folkman & Lazarus 1980; Lazarus 1982; Lazarus & Folkman 1984). They define coping as "constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (Lazarus & Folkman 1984, p. 141). As seen in Table 4.2, many of the definitions are similar to or evolve from the model proposed by Lazarus and Folkman (1984). There are several key concepts in the definition. First, coping is a process. The process involves conscious psycholo- gical cognitions and behaviors, presumed to have protective qualities. The process begins with appraisal. Coping arises from a situation of psychological stress stress arising from an observed stimulus--response relationship (as opposed to either a stimulus or a response uniquely defining stress). Coping is different from its outcomes. Coping implies efforts to manage demands, whether or not those efforts are deemed "successful" (Folkman 1984). Previous research efforts confounded coping with effective outcomes (Folkman 1984; Klein Table 4.1 Examples of Coping Literature That Fail to Define Coping Authors Baskin, Forehand, & Saylor 1985 Brickman et al. 1982 Commerford et al. 1990 Fife, Norton, & Groom 1987 McCubbin & Figley, Vol. 1, 1983; Figley & McCubbin, Vol. II, 1983 Comments Two series volume with multiple contributors. Hansen 1986 Heller & Swindle 1983 Hirsch 1980 Kazak 1989 Interchanges coping adaptation/adjustment Kupst et al. 1982 Kupst & Schulman 1988 Lavee, McCubbin, & Olson 1987 with Longitudinal studies of parental coping Refers to Lazarus & Folkman model (1984), labels "sense of coherence" as a coping resource and measures coping by a family coping instrument. Never clearly defines coping. Levental, Nerenz, & Steele 1984 Presents a interact threats. coping. separated executing model of how people and cope with health No clear definition of Coping conceptually into planning and responses. Mattlin, Wethington, & Kessler 1990 McCubbin et al. 1983 Peterson 1989 Series editor Uses the model of Lazarus/Folkman but does not offer a definition. Discusses coping patterns but does not offer a definition of coping. Special series to integrate the progress made in coping process research with the challenges of behavioral research. Most articles did not define coping, e.g.: Miller, Leinbach & Brody Vitaliano, Katon, Jaiuro & Russo Johnson, Lauver & Nail Leventhal, Leventhal, Shacham & Easterling Revenson & Fulton Table 4.1 continued Authors Reiss & Oliveri 1983 Spinetta et al. 1988 Tolsdorf 1976 Van Dongen-Melman, Pruyn, Van Zanen, & Sanders-Woudstra 1986 Wentowski 1981 Wheaton 1983 Wheaton 1985 Wills 1987a Wills 1987b Wortman & Silver 1989 Wyckoff & Erickson 1987 Comments Differentiates between environ- mental and personal coping resources but does not define coping. Used a self-report measure of coping: "how one coped" Table 4.2 Comparisons of Coping Definitions Author/Date Chesler & Barbarin 1987 Davis & Nakeo 1990 Kupst et al. 1984 Lazarus & Folkman 1984 McCubbin et al. 1980 Menaghan 1983b Murphy & Moriarty 1976 Pearlin & Schooler 1978 (also used in Pearlin Aneshensel 1986; Pearlin 1989) Rowland 1989 Definitions ". people's efforts to meet the challenge present by stressful life situations" (p. 91). ". the degree to which a person is able to deal with the hardships of his/her life circumstances" (P. 7) "Coping meant both what people did in their attempts to master the situation and the adequacy of their coping" (p. 151). "Constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (p. 141). ". process of achieving a balance in the family system which facilitates organization and unity and promotes individual growth and development" (p. 865). "To cope is to manage stress successfully, and coping responses are presumed to reduce distress and/or improve one's situation" (p. 114). [Distinguishes between coping resources, styles, and efforts.] ". a general term to include defense mechanisms, active ways of solving problems, and methods for handling stress that do not come under the heading of defense mechanisms and problem-solving methods" (p. 5). ". behavior that protects & people from being psychologically harmed by problematic social experience" (p. 2). "Adaptation under very difficult situations" (p. 44). [Per White 1974.] Table 4.2 continued Author/Date Rutter 1981 Singer 1984 Stone & Neale 1984 Venters 1981 White 1974 Definitions ". what the person does about the stress situation. Coping mechanisms include an individual's attempts to directly alter the threatening conditions themselves and the attempts to change only his appraisals of them so that he need not feel threatened" (p. 345). Summarizes two classical approaches to the coping literature: a) "In the context of such a physiologic/endocrinologic view of stress, coping is a process that modulates the neuro-endocrinologic functioning" (p. 2303). [Per the model of Hans Selye.] b) "In the interactionist view S. coping is any action or belief that modifies some aspect of the appraisal and evaluation process" (p. 2303). [Per the model of Richard Lazarus.] "Those behaviors and thoughts which are consciously used by an individual to handle or control the effects of anticipating or experiencing a stressful situation" (p. 893). ". sum total of all strategies and patterns employed to deal with a significant threat to the family's stability" (p. 290). Focuses specifically on the family. "Adaptation under relatively difficult conditions" (p. 49). 74 1983). For example, if a person drank alcohol to excess in response to a loss, then that person would have been evaluated as "not coping well." Anthropological Use of Coping The concepts of coping and adaptation are used widely in anthropology. In general, adaptation is associated with day to day adjustments, while coping implies responses to a cri- sis--something beyond the ordinary, like disasters, migration, and famine. Still, coping is not defined clearly by anthropologists and is generally discussed as a strategy rather than as a process (Colson 1979; Colson 1991; Downing, Gitu, & Kamau 1989; Huss-Ashmore 1989). Hansen (1986) referred to coping strategies as conscious plans. Coping strategies, tactics (behavior), and buffering mechanisms (relationships or factors that function to promote adaptation and human survival) he said are ways that people react to and adapt to crisis. Implicit in the use of coping and adaptation is the idea of a successful outcome some positive adjustment to the environment. Colson (1991), for example, says that people who survive displacement prove that they have coping abilities. There is a value-ladened linkage between survival and coping in this statement. The person who migrates to another location is thus successful with coping; the refugee who turns 75 back then is not seen as a survivor. The efforts are not as important as the outcome. Consistent with the conflating of coping and outcomes, anthropologists also lump the coping process with components of that process, such as cognitive appraisal. Colson (1979) is an exception. In discussing how self-reliant societies deal with changing environmental conditions, she notes that the first coping device is an assessment of those conditions. Although she linked coping behaviors and appraisal as the same process, she recognized the importance of some type of appraisal. Efficacy of coping behaviors has not been evaluated in terms of outcomes. Nor has efficacy been linked to specific functions of coping by anthropologists, who tend to deal with society or community-level aggregate measures and not with individual differences in response to the environment over time. The model proposed by Lazarus and Folkman offers the best alternative approach. Historical Approaches to the Study of Coping The first studies of coping were done by physiologists, concentrating on stress responses.' Selye (1956) pioneered 'In Chapter 1 of their book, Lazarus & Folkman (1984) review the concept of stress and how it has been systematically conceptualized over the years. Pearlin (1989) reviews stress from a sociological perspective. He urges for a critical analysis of stress and coping that includes the "structural contexts of stress" (e.g. social institutions and statues, gender, race, and ethnicity). 76 the study of bodily defenses against noxious stimuli. His theoretical model, "The General Adaptation Syndrome," was widely used for years. Interest in stress shifted to interest in coping with stress. Animal models focused on the concepts of arousal, activation, or "drive" and the relationship to coping. Coping was defined as acts that control aversive environmental conditions, resulting in lowered psychophysio- logical disturbance (usually acts of avoidance and escape behavior). Minimal attention was paid to the complexities in human cognitive-emotional functioning (Lazarus & Folkman 1984). Studies of human coping were grounded in the psycho- analytic ego psychology model where cognition played a major role. In this model, coping was defined as processes (acts/thoughts) that individuals used to solve problems (Lazarus & Folkman 1984). The processes were differentiated into a hierarchy of strategies that went from the lowest ego processes (psychotic levels of functioning), to ego defenses (neurotic modes of adaptation), to the highest level of mature ego processes (Lazarus & Folkman 1984). For example, in a much cited study, Vaillant (1977) used a hierarchy of ego defenses to classify coping styles of male college students who were followed longitudinally. Unfortunately, defining coping to cognition ignores the importance of behaviors and situational factors. 77 Another intrapsychic approach to coping has been to conceptualize it as a personality trait (Billings & Moos 1981). Emphasis is placed primarily on the properties of the person, with little notice given to the context of the situation (Folkman et al. 1986). The assumption of this approach is that personality traits or styles dispose individuals to cope in predictable ways over the life course. Wheaton (1983) investigated psychiatric outcomes using personality traits. Kobasa, Maddi, and Courington (1981) studied personality characteristics as mediators of the stress-illness relationship. The use of personality traits or styles has been widely criticized. Attributional styles and traits influence how a person responds to life events and may be related to coping, yet they do not describe the coping process (Stone & Neale 1984). Additionally, data are lacking on how traits mediate an outcome with respect to stressors (Rutter 1981). Traits have had very modest predictive value with respect to actual coping behavior. Surgical patients were interviewed pre-operatively about specific behaviors toward the threat of surgery and were also administered a standard trait assessment test. No correlations were found between the traits and the behaviors. The behavior process measure alone predicted the outcome variables of speed and ease of surgical recovery better than either the trait measure alone or in combination with the behavior measure (Cohen & Lazarus 1973). 78 The unidimensional qualities of traits ignores the complexity and variability in coping (Lazarus & Folkman 1984). Limiting coping to an analysis of traits reduces the idea of coping to the maintenance of psychological equilibrium and does not include active problem-solving behavior directed at avoiding or changing the situation (Billings & Moos 1981). Models of Coping research efforts expanded to view coping as a multi- dimensional construct. Cognitions, behaviors, and contextual factors became important variables. Conceptually there was a shift towards thinking that change per se may not be suffi- cient or necessary for the experience of stress (Menaghan 1983a). Research moved from naturalistic observation (Mechanic 1962) to process oriented research based on larger, representative samples (Folkman et al. 1986; Mattlin, Wethington, & Kessler 1990). However, most studies continued to be cross-sectional and to ignore outcome variables. The Lazarus/Folkman model of stress, appraisal and coping In this model, coping and cognitive appraisal are two processes that mediate stressful person-environmental relations and adaptational outcomes (Folkman, Lazarus, Dunkle- Schetter, De Longis, & Gruen 1986). Psychological stress is defined as "a particular relationship between the person and the environment that is appraised by the person as taxing or 79 exceeding his or her resources and endangering his or her well-being" (Lazarus & Folkman 1984: 19)(see Figure 4.1). There are three main features in this process approach to coping. Actual behavior is observed and assessed, not what the individual says he or she would usually do or should do. Coping occurs within a specific context--that is, under particular conditions to which coping thoughts and actions are directed. Lastly, the process model indicates change. Coping thoughts and actions alter over time as the contextual circum- stances shift. Coping does not occur randomly. It occurs in direct response to continuous appraisals and reappraisals of the changing person-environmental relationships. Cognitive appraisal is a process that determines why and to what extent interactions between a person and the environment are relevant to his or her well-being or are stressful (Folkman et al. 1986). Understanding cognitive appraisal is a step toward explaining the processes between the encounter and the reaction. Primary appraisal is an evaluative process to determine whether the person has anything at stake in the encounter. An irrelevant appraisal implies that the encounter carries no implication for a person's well-being. If the outcome of an encounter is construed as positive then it is seen as a be- nign/positive appraisal. Stress appraisals include harm/loss, Person-Environment Interaction SSituation Foctors Primary Appraisal I I Irrelevant (no action needed) I Stressful Harm/Loss Threat Challenge Action I Benign/Positive (no action needed) Thoughts Secondary Appraisal I Coping Resources Physical (health, energy, stamina) Social (social support from social network) Psychological (beliefs, morale, problem-solving skills) 1 Coping Efforts Emotion-Focused Information Seeking Problem-Focused Direct Action Inhibition of Action Infrapsychic Processes 1 Outcomes Social Social Psychological Figure 4.1 Schematic Representation of Lazarus and Folkman Model (1984) Person Factors Behavioral 81 threat, and challenge. Harm/loss situations are those in which some damage (physical and/or psychological) has occurred. Threat implies harms or losses that are anticipated in the future, thus allowing for anticipatory coping. Contrasting threat, with its associated negative emotions such as loss and fear, are challenge appraisals. Challenge appraisals focus on positive emotions and on the potential for gain/growth in an encounter. Challenge also initiates anticipatory coping (Lazarus & Folkman 1984). Lazarus and Folkman emphasize that challenge and threat appraisals are not opposite ends of a continuum. They can occur simultaneously (ex. job promotion) even though their cognitive components (potential harm vs. potential mastery) and their affective components (positive vs. negative emotions) differ. Appraisals can shift from challenge to threat and vice versa. Marris (1974) argues that meaning is a crucial organizing principle of human behavior and as such, makes sense of action by providing reasons for it. Meaning is "a structure which relates purposes to expectations so as to organize actions--whether the actions are taken or only thought about" (Marris 1974: vii). Clearly, meaning is essential to appraisal and to coping efforts. The benign/positive appraisal is the least well-developed aspect of primary appraisal. The distinction between benign/positive and challenge appraisal is whether or not the situation (person-environmental transaction) will tax the 82 resources of the individual (Folkman 1984). I believe that challenge appraisals implicitly reflect a sense of motivation and immediacy in action. Challenge and threat indicate that some degree of vulnerability or jeopardy is present, and something needs to be done to manage the situation. Secondary appraisal includes the evaluative process that looks at available coping strategies, the likelihood that any given coping option will accomplish what it is supposed to, and the possibility that one could apply a particular strategy effectively. Primary appraisals of what is at stake and secondary appraisal of coping options jointly determine the significance of the stress, as well as the strength and quality or content of the emotional reaction. Reappraisal follows an earlier appraisal and refers to a changed appraisal based on new information from the environmental and/or the person (Lazarus & Folkman 1984). Both personal and situational factors influence appraisal. Two important person factors are beliefs and commitments. Beliefs can be generalized (such as with religion) or specific (such as belief in one person). Beliefs color the individual's perception of an event. Beliefs regarding control (i.e., can the individual control outcomes of importance) influence primary appraisal (Folkman 1986). Rotter's theory of locus of control (1966) is applicable to Lazarus and Folkman's model. Under conditions of ambiguity or novelty, these generalized control expectancies are thought to 83 have their greatest influences (Folkman 1986). In situations of environmental ambiguity, situational cues are minimal; inference is needed to understand the situation; and, hence, person factors have more influence in determining the meaning of the situation (Folkman 1986). Conversely, in situations with minimal ambiguity, situational factors play a more important role than beliefs/person factors. "One's belief in one's ability to control an event influences how that event is appraised and, through appraisal, subsequent coping activity" (Lazarus & Folkman 1984: 77). Sims and Baumann (1972) used the locus of control theory to compare coping with tornado threats in two different sections of the country (Illinois and Alabama). People living in the area of highest frequencies of tornado-caused deaths (Alabama) internalized their sense of control over events, exhibited fatalism and passivity, and were inattentive to organized warning systems. Illinoisans were more action- oriented, objective, rational, and displayed features of an external locus of control. While psychological attitudes are only one factor in the outcome of the number of deaths due to tornados, this study was an interesting application of the model discussed above. Commitments refer to values, choices, and/or goals and serve to determine what is at stake in a stressful encounter, thus underlying choices people make. Together commitments and beliefs influence appraisal by a) determining how an encounter 84 will influence well-being, b) shaping a person's understanding of the event, subsequently affecting the person's emotions and coping efforts, and c) providing the basis for evaluating outcomes (Lazarus & Folkman 1984). Situational factors work in concert with person factors to determine the extent to which any event is stressful. Situational factors include novelty, predictability, event uncertainty, and the temporal factors of imminence, duration, and temporal uncertainty. Coping is determined both by resources and by constraints that mitigate the use of resources (Lazarus & Folkman 1984). The coping model used by Lazarus and Folkman distin- guishes two functions of coping: problem-focused coping and emotion-focused coping. Problem-focused coping is defined as "coping that is directed at managing or altering the problem causing the distress," while emotion-focused coping is "coping that is directed at regulating emotional response to the problem" (Lazarus & Folkman 1984: 150). In most stressful situations, both forms of coping are used, and the appraisal of the encounter (e.g., whether one has the potential for control) determines the relative proportion of each form used. Situations that are appraised as unchangeable favor emotion- focused coping, while problem-focused forms of coping are more apparent when encounters are appraised as amenable to change (Folkman & Lazarus 1980; Lazarus & Folkman 1984; Folkman 1986; Folkman et al. 1986). |
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