Adult childhood cancer survivors' narratives of managing their health: the unexpected and the unresolved
Health Services; Childhood cancer survivor; Narrative research; Patient perspective; Qualitative
PURPOSE: Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong follow-up care. The purpose of this study was to identify the different ways that adult survivors of childhood cancer manage their medical and psychological challenges. METHODS: Data from in-depth interviews with 30 adult survivors of a childhood cancer (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, thematic narrative analysis methods. RESULTS: The survivors had not expected the medical, psychological, and social challenges that arose over time and that often remained unresolved. Five narrative themes revealed distinct ways that survivors managed their health challenges: (1) trying to forget cancer, (2) trusting the system to manage my follow-up care, (3) being proactive about my health, (4) stumbling from one problem to the next, and (5) struggling to find my way. CONCLUSIONS: Variation exists in the ways in which childhood cancer survivors frame their health, their perceived significance of health challenges, strategies used to manage health, interactions with healthcare professionals and the health system, and parental involvement. IMPLICATIONS FOR CANCER SURVIVORS: This research provides novel insights that can be used to inform the development of patient-centered health services that promote the assessment and tailoring of care to the diverse ways survivors enact their agency, as well as their psychoeducational coping styles, therapeutic relationship needs, and information needs.
2016-08
Howard AF; Goddard K; Tan de Bibiana J; Pritchard S; Olson R; Kazanjian A
Journal Of Cancer Survivorship: Research And Practice
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s11764-016-0517-8" target="_blank" rel="noreferrer">10.1007/s11764-016-0517-8</a>
Losing Thomas & Ella: A Father's Story (A Research Comic)
Graphic Novels as Topic; Grief; perinatal death; stillbirth; Comics-based research; Death; Fathers; Fathers/ psychology; Grief; Humans; Male; Narration; Narrative research; Perinatal Death; Qualitative Research; Research comics; Sequential art; stillbirth
"Losing Thomas & Ella" presents a research comic about one father's perinatal loss of twins. The comic recounts Paul's experience of the hospital and the babies' deaths, and it details the complex grieving process afterward, including themes of anger, distance, relationship stress, self-blame, religious challenges, and resignation. A methodological appendix explains the process of constructing the comic and provides a rationale for the use of comics-based research for illness, death, and grief among practitioners, policy makers, and the bereaved.
Weaver-Hightower MB
Journal Of Medical Humanities
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s10912-015-9359-z" target="_blank" rel="noreferrer">10.1007/s10912-015-9359-z</a>