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Journal of Cancer Survivorship
Published in: Journal of Cancer Survivorship 4/2016

Open Access 01-08-2016

Adult childhood cancer survivors’ narratives of managing their health: the unexpected and the unresolved

Authors: A. Fuchsia Howard, Karen Goddard, Jason Tan de Bibiana, Sheila Pritchard, Robert Olson, Arminee Kazanjian

Published in: Journal of Cancer Survivorship | Issue 4/2016

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Abstract

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.
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Metadata
Title
Adult childhood cancer survivors’ narratives of managing their health: the unexpected and the unresolved
Authors
A. Fuchsia Howard
Karen Goddard
Jason Tan de Bibiana
Sheila Pritchard
Robert Olson
Arminee Kazanjian
Publication date
01-08-2016
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 4/2016
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-016-0517-8

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