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

Title

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

Creator

Howard AF; Goddard K; Tan de Bibiana J; Pritchard S; Olson R; Kazanjian A

Publisher

Journal Of Cancer Survivorship: Research And Practice

Date

2016

Subject

Health Services; Childhood cancer survivor; Narrative research; Patient perspective; Qualitative

Description

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

Rights

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).

Type

Journal Article

Citation List Month

Backlog

Citation

Howard AF; Goddard K; Tan de Bibiana J; Pritchard S; Olson R; Kazanjian A, “Adult childhood cancer survivors' narratives of managing their health: the unexpected and the unresolved,” Pediatric Palliative Care Library, accessed May 23, 2024, https://pedpalascnetlibrary.omeka.net/items/show/14547.