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

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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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Acknowledgments

Funding for this project was received from the Comprehensive Cancer Centre at the Hospital for Sick Children, Toronto, Ontario, Canada.

Conflict of interests

The authors have no conflict of interests to disclose.

Author information

Authors and Affiliations

  1. Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada

    J. N. Stinson, L. Sung, M. E. White, L. A. Jibb & N. Baker

  2. Department of Anesthesia and Pain Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada

    J. N. Stinson

  3. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada

    J. N. Stinson & L. A. Jibb

  4. Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada

    J. N. Stinson, L. Sung & A. Gupta

  5. Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada

    L. Sung & A. Gupta

  6. Department of Psychology, The Hospital for Sick Children, Toronto, Ontario, Canada

    E. Dettmer

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  1. J. N. Stinson
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Correspondence to J. N. Stinson.

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Stinson, J.N., Sung, L., Gupta, A. et al. Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers. J Cancer Surviv 6, 278–286 (2012). https://doi.org/10.1007/s11764-012-0222-1

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  • DOI: https://doi.org/10.1007/s11764-012-0222-1

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