Journal
JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY
Volume 10, Issue 1, Pages 46-55Publisher
MARY ANN LIEBERT, INC
DOI: 10.1089/jayao.2020.0027
Keywords
psychosocial; standard of care; supportive care; survivorship
Categories
Funding
- Cancer Nurses Society Australia
- Children's Hospital Foundation
- Mary McConnell award
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This study investigated the barriers in access to psychosocial care for adolescents and young adults (AYAs) with cancer, and found that these barriers were less common during diagnosis and treatment, but became more significant after treatment, largely due to a lack of holistic, multidisciplinary survivorship care.
Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.
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