40 Years of Advances in Psychosocial Research and Care by Katherine Kelly
The psychosocial care of children with cancer and their families has been a longstanding commitment of pediatric oncology nurses globally and of mine personally. I began my career as a University of Kansas junior nursing student when a very large study of the psychosocial impact of childhood cancer was winding down. The study, led by Dr. Shirley B. Lansky and funded by the American Cancer Society, was wide-ranging and aimed at understanding the psychosocial impact of childhood cancer on children, family members and others in the community. They were also testing novel supportive interventions. The study had a powerful effect on me and our clinical practice.
Our unit held psychosocial rounds weekly from 2-3pm. The timing coincided with shift change to allow nurses to come in early to attend or to cover so that the day shift nurses could attend. Any team member could place a child or family member’s name on the agenda. The team reviewed the child’s disease status and then planned together the best way to address a concern. Sometimes the nurse or other staff member simply wanted an update on how a family was doing after a child’s death or how a child was doing after completion of therapy. The key was that the entire team in the room was focused on the psychosocial care of children and families. As a young nursing student, I attended every meeting I could; when I joined the staff after graduation I continued to do so. I had learned the importance of expert psychosocial care.
The multidisciplinary research team at Kansas published a very systematic assessment of the psychosocial impact of childhood cancer on the child and family with publications addressing the impact on school (Klopovich et al., 1981; Cairnes et al., 1982), marriages (Lansky et al., 1978), siblings (Cairns, et al., 1979), medical (Lansky et al., 1983) and non-medical (Lansky et al., 1979) costs. One of the strengths of this early research was its pioneering interprofessional collaboration. Sometimes studies were led by physicians (e.g., Lansky), and sometimes by nurses (e.g., Klopovich), as well as by members of other disciplines. At around the same time, other investigators – primarily psychologists specializing in childhood cancer – were also reporting groundbreaking research in all areas of the psychological impact of childhood cancer on the child and family (Kellerman, 1980; Spinetta & Deasy-Spinetta, 1981). This is also when (in 1980) Gerald Koocher, published The Damocles Syndrome, coining a phrase we still use to define how survivors view their late effects. Interestingly, the majority of studies published in the Journal of Pediatric Psychology during this timeframe included very few nursing co-authors or nursing research citations in the study bibliographies. Fortunately, we are now seeing greater focus on interdisciplinary research, which will be critical to make the gains needed to continue to improve child and family cancer experiences.
Nevertheless, pioneering pediatric oncology nurse researchers at this time were breaking new ground in studying psychosocial aspects of childhood cancer. Dr. Ida Martinson focused on home care of the dying child (Martinson et al., 1978), while others focused their research on hope (Hinds, 1988), resilience (Haase, 1987) and CNS late effects (Moore, 1995). This is only a sampling – a comprehensive listing of nursing researchers working in the psychosocial arena is beyond the scope of this blog. In addition to the nurse researchers leading these programs of research, countless nurses contributed to psychosocial research studies by facilitating patient/family participation, aiding in securing consent, and implementing the studies at the bedside and in the clinic.
As we move forward, a critical challenge is that much of the evidence for what helps patients and families has not been effectively translated into clinical practice. Today, after four decades of psychosocial research paralleling APHON’s 40 years, among the interventions not consistently implemented across settings are:
- hospital based schooling and/or school re-entry programs
- adequate psychosocial personnel to provide needed evidence-based care
- training for nurses and other team members to provide basic supportive communication to children and families facing the crisis of diagnosis or the anguish of a child’s death.
What is now very exciting is a shift in focus to the translation of the research described above into practice recommendations for every child diagnosed with cancer and their family (Wiener, Kazak, Noll, Patenaude, & Kupst, 2015). The Psychosocial Standards of Care Project has comprehensively defined practice recommendations for the needed psychosocial care of all children and their families. The leaders of this project, Lori Wiener, Mary Jo Kupst, Andrea Patenaude, Anne Kazak, and Bob Noll, were convened by Peter and Vicki Brown, whose son Mattie (pictured below) was treated for osteosarcoma at various childhood cancer treatment centers. The Browns noted that while their medical care at these centers met their expectations, the psychosocial care did not. After Mattie’s death, the Browns formed the Mattie Miracle Cancer Foundation to assure that every child with cancer and their families receive optimal evidence-based psychosocial care. The standards were developed by teams of experts who systematically reviewed the evidence and then extracted the basic recommendations for psychosocial care that could be delivered in any size setting. I am happy to say that APHON was the first professional organization to endorse the standards.
The project is now focused on advocacy – to set policy standards that assure all children and families receive needed psychosocial care. To accomplish this each and every member of the childhood cancer care team must be ready to do their part. Some of this care must be provided by licensed psychosocial experts such as psychologists, social workers, and child life therapists. But much of the basic care can and should be coordinated and/or provided by nurses. As nurses, we spend the most time with patients and families. Nurses can creatively incorporate psychosocial care into their daily routines in the hospital or clinic. If nurses banded together with their psychosocial team members to design care that assures that every child receives the minimum psychosocial standard of care, just think how this might affect the lives of our patients and their families.
Today, as a nurse scientist, I continue to focus on psychosocial care in my research, in my efforts to advance evidence-based care of children and families and in my mentoring of nurses, nursing students and other professionals, and in efforts to translate high quality evidence-based care into practice. I invite you to visit the Mattie Miracle Cancer Foundation website (www.mattiemiracle.com/standards) to read the psychosocial standards of care yourself and decide how you can ensure that every child with cancer and their family will receive the best care possible – care that is both technically and psychosocially excellent.
Cairns, N.U., Clark, G.M., Smith, S.D., & Lansky, S.B. (1079). Adaptation of siblings to childhood malignancy. Journal of Pediatrics, 95(3), 484-487.
Cairns, N.U., Klopovich, P., Hearne, E., & Lansky, S.B. (1982). School attendance of children with cancer. Journal of School Health, 52(3), 152-155.
Haase, J. (1987). The components of courage in chronically ill adolescents. Advances in Nursing Science, 9(2), 64-80.
Hinds, P.S. (1988). Adolescent hopefulness in illness and health. Advances in Nursing Science, 10(3), 79-88.
Kellerman, J., ed. (1980). Psychological Aspects of Childhood Cancer. Springfield: Charles C Thomas.
Klopovich, P., Vats, T.S., Butterfield, G., Cairns, N.U., Lansky, S.B. (1981). School phobia: Interventions in childhood cancer. Journal of the Kansas Medical Society, 82(3), 125-127.
Koocher, G.P., OMalley JE, Eds. (1980). The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer. New York McGraw-Hill, 1980.
Lansky, S.B., Black, J.L., & Cairns, N.U. (1983). Childhood cancer. Medical costs. Cancer, 52(4), 762-766.
Lansky, S.B., Carins, N.U., Clark, G.M., Lowman, J., Miller, L., & Trueworthy, R. (1979). Childhood cancer: Nonmedical costs of the illness. Cancer, 43(1), 403-408.
Lansky, S.B., Cairns, N.U., Hassanein, R., Wehr, J., & Lowman, J.T. (1978). Childhood cancer: Parental discord and divorce. Pediatrics, 62(2), 184-188.
Martinson, I.M., Ed. (1976). Home Care for the Dying Child: Professional and Family Perspectives. New York Appleton-Century Crofts, 1976.
Moore, I.K. (1995). Central nervous system toxicity of cancer therapy in children, Journal of Pediatric Oncology Nursing, 12(4), 203-210.
Spinetta, J.J., & Deasy-Spinetta, P. Eds.(1981). Living with Childhood Cancer. St. Louis: C. V. Mosby, 1981.
Wiener, L., Kazak, A.E., Noll, R.B., Patenaude, A.F., & Kupst, M.J. (2015). Standards for Psychosocial Care for Children with Cancer and Their Families, Pediatric Blood & Cancer, 63(55), entire special issue.
This blogger would like to acknowledge and thank Peter and Vicki Brown for their generous permission to include a picture of Mattie for this blog and their helpful suggestions to assure my descriptions of the Mattie Miracle Cancer Foundation and the Psychosocial Standards of Care Project are properly represented.