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Journal of Cancer Survivorship

Published in:

01-09-2012

Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers

Authors: J. N. Stinson, L. Sung, A. Gupta, M. E. White, L. A. Jibb, E. Dettmer, N. Baker

Published in: Journal of Cancer Survivorship | Issue 3/2012

Abstract

Purpose

The ability for adolescents with cancer (AWC) to engage in disease self-management may result in improved cancer outcomes and quality-of-life ratings for this group. Despite this, a comprehensive self-management program for this group is yet to be developed. To ensure that self-management programming developed for AWC meets the needs of this group, discussion with key stakeholders (i.e., AWC, parents, and healthcare providers) is required.

Methods

A descriptive qualitative design was used. Adolescents (n = 29) who varied in age (12 to 18 years) and type of cancer, their parents (n = 30) and their healthcare providers (n = 22) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focus-group interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes.

Results

Four major themes, which captured the self-management needs of AWC, emerged from the data. These themes were: (1) disease knowledge and cancer care skills, (2) knowledge and skills to support effective transition to adult healthcare, (3) delivery of AWC-accessible healthcare services, and (4) supports for the adolescent with cancer.

Conclusions

In order to provide comprehensive, relevant, and acceptable self-management programs to AWC, the voices of this population, their parents, and healthcare providers should be considered. Findings from this study will be used to develop and evaluate cancer self-management programming for AWC.

Implications for cancer survivors

Self-management represents an important avenue for exploration into improving cancer outcomes and quality of life for survivors of cancers during adolescence.

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Title: Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers
Authors: J. N. Stinson
L. Sung
A. Gupta
M. E. White
L. A. Jibb
E. Dettmer
N. Baker
Publication date: 01-09-2012
Publisher: Springer US
Published in: Journal of Cancer Survivorship / Issue 3/2012
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-012-0222-1

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Abstract

Purpose

Methods

Results

Conclusions

Implications for cancer survivors

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