Abstract
PurposeCurrently, 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.MethodsData 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.ResultsThe 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.ConclusionsVariation 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 SurvivorsThis 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.
Highlights
Childhood cancer cure rates exceed 80 %, leading to evergrowing numbers of cancer survivors living into adulthood [1, 2]
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
Summary
Childhood cancer cure rates exceed 80 %, leading to evergrowing numbers of cancer survivors living into adulthood [1, 2]. Many of these childhood cancer survivors (CCS) will face an increased risk for a broad range of serious physical and psychological health conditions during adulthood [3,4,5,6,7]. There is strong evidence that the majority of serious health problems do not become apparent until many years, even decades, after the cancer has been cured, and these late effect risks increase substantially with age [3, 5]
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