The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors

Clinical research has led to tremendous improvements in treatment efficacy for most childhood cancers; overall 5‐year survival is now greater than 75%. Long‐term consequences of cure (i.e. adverse medical and psychosocial effects) have only recently begun to emerge as a primary focus of clinical research, including studies of health‐related quality of life among survivors. Usually lacking in such efforts, however, is consideration of the impact of the cancer experience on the family, and the influence that the family's response to cancer has on quality of life in the child. From this qualitative analysis of seven focus groups with 45 parents of children a year or more out of cancer treatment, we report those aspects of a child's cancer diagnosis, treatment, and recovery that parents perceived as particularly difficult for their family, and the resources and coping behaviors parents perceived as helpful to their family in dealing with and managing the cancer experience. Using the Family Adjustment and Adaptation Response theoretical model to organize the data, the domains of strains and resources were delineated into themes and sub‐themes related to the cancer, child, family, health‐care system, and community. Within a third domain, coping, sub‐themes were identified within the themes of appraisal‐focused, problem‐focused, and emotion‐focused coping behaviors. Integration of this information should serve to improve future studies of health‐related quality of life among children who survive cancer. Copyright © 2003 John Wiley & Sons, Ltd.

[1]  I B Pless,et al.  Issues involved in the definition and classification of chronic health conditions. , 1993, Pediatrics.

[2]  T. Elkin,et al.  Psychological functioning of adolescent and young adult survivors of pediatric malignancy. , 1997, Medical and pediatric oncology.

[3]  R. Stein,et al.  Uncertainty and its relation to the psychological and social correlates of chronic illness in children. , 1985, Social science & medicine.

[4]  J. Patterson,et al.  Social Support in Families of Children with Chronic Conditions: Supportive and Nonsupportive Behaviors , 1997, Journal of Developmental and Behavioral Pediatrics.

[5]  N. Shainess,et al.  Positive Illusions: Creative Self-Deception and the Healthy Mind , 1990 .

[6]  J. Pruyn,et al.  Late psychosocial consequences for parents of children who survived cancer. , 1995, Journal of pediatric psychology.

[7]  M. Chesler,et al.  Self-Reported Worries Among Long-Term Survivors of Childhood Cancer and Their Peers , 1999 .

[8]  J. Coyne,et al.  "Miscarried helping" in the families of children and adolescents with chronic diseases. , 1991 .

[9]  S. Thompson,et al.  Life Schemes: A Framework for Understanding the Search for Meaning , 1988 .

[10]  C. Eiser,et al.  Examining the psychological consequences of surviving childhood cancer: systematic review as a research method in pediatric psychology. , 2000, Journal of pediatric psychology.

[11]  J. Moskowitz,et al.  Positive affect and the other side of coping. , 2000, The American psychologist.

[12]  T. Elkin,et al.  Survivors of childhood brain tumors: behavioral, emotional, and social adjustment. , 2002, Clinical psychology review.

[13]  J. Raczynski,et al.  Family influences on hopelessness among children early in the cancer experience. , 1985, Journal of pediatric psychology.

[14]  L. F. Lopes,et al.  [Late effects of childhood cancer treatment]. , 2000, Revista da Associacao Medica Brasileira.

[15]  Susan Folkman,et al.  Meaning in the Context of Stress and Coping , 1997 .

[16]  R. Mulhern,et al.  Health status and health‐related quality of life in long‐term adult survivors of pediatric solid tumors , 1999, International journal of cancer. Supplement = Journal international du cancer. Supplement.

[17]  D. Christakis,et al.  Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. , 1997, Journal of consulting and clinical psychology.

[18]  E. Lazcano-Ponce,et al.  The emotional response of families to children with leukemia at the lower socio‐economic level in central Mexico: A preliminary report , 2003, Psycho-oncology.

[19]  H. Bernard,et al.  Data Management and Analysis Methods , 2000 .

[20]  L. Ries,et al.  Cancer incidence and survival among children and adolescents: United States SEER Program 1975-1995. , 1999 .

[21]  F. Davis,et al.  The contribution of nonmalignant tumors to CNS tumor incidence rates among children in the United States , 1999, Cancer Causes & Control.

[22]  K. Unni,et al.  Bone tumors: General aspects and data on 8,547 cases. 4th Ed , 1986 .

[23]  S. Sexson,et al.  Parental psychopathology and children's adjustment to leukemia. , 1993, Journal of the American Academy of Child and Adolescent Psychiatry.

[24]  Ann W. Garwick,et al.  The Impact of Chronic Illness on Families: a Family Systems Perspective , 1994 .

[25]  A. Antonovsky Unraveling the mystery of health: how people manage stress and stay well , 1987 .

[26]  D. Christakis,et al.  Posttrauma symptoms in childhood leukemia survivors and their parents. , 1996, Psychosomatics.

[27]  A. Kazak,et al.  Symptoms of posttraumatic stress in young adult survivors of childhood cancer. , 2000, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[28]  A. Kazak,et al.  Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. , 1997, Journal of pediatric psychology.

[29]  L. Robison,et al.  Incidence of cancer in children in the United States. Sex‐, race‐, and 1‐year age‐specific rates by histologic type , 1995, Cancer.

[30]  L. Westbrook,et al.  Framework for identifying children who have chronic conditions: the case for a new definition. , 1993, The Journal of pediatrics.

[31]  J. Coyne,et al.  Social support, interdependence, and the dilemmas of helping. , 1990 .

[32]  Taylor Murray,et al.  Cancer statistics, 2000 , 2000, CA: a cancer journal for clinicians.

[33]  J. Patterson,et al.  Families Experiencing Stress: I. The Family Adjustment and Adaptation Response Model , 1988 .

[34]  S. Katz When the child's illness is life threatening: impact on the parents. , 2002, Pediatric nursing.

[35]  S. Folkman,et al.  Stress, appraisal, and coping , 1974 .

[36]  M. Chesler,et al.  Quality of life in childhood cancer survivors , 2002, Psycho-oncology.

[37]  Klaus Krippendorff,et al.  Content Analysis: An Introduction to Its Methodology , 1980 .

[38]  Mark A. Chesler,et al.  Mothers of Survivors of Childhood Cancer , 2002 .