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

Abstract

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 selfmanagement 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 (n029) who varied in age (12 to 18 years) and type of cancer, their parents (n030) and their healthcare providers (n022) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focusgroup interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes. Results Four major themes, which captured the selfmanagement 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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