AYAs diagnosed with cancer face unique challenges. AYAs with cancer do not receive appropriate information and referrals to support services. They experience an intense symptom burden and face challenges in decision-making. This project seeks to:
We used a mixed-methods approach. In phase 1, we completed a literature review to summarize supportive care needs of AYAs with cancer. In Phase 2, we are partnering with the Princess Margaret Cancer Center to conduct primary research through a survey and focus groups to co-design solutions. In addition, a multi-disciplinary advisory council will be formed to advise CCS in formulating, implementing, and evaluating a holistic strategy.
In phase 1, we identified a total of nine unmet needs: career supports; age-specific information; financial burden; psychosocial supports; physical challenges; palliative care; access to clinical trials; supports for fertility services and self-management. Proven strategies for improving information and support services for AYA include increasing availability of life stage-specific information, access to peer support programs and practical supports for financial, fertility and mental health services.
The needs of AYA vary along the continuum of care, in addition to their age, stage in life and geographic location. This work provides a foundation to develop an AYA strategy to implement the necessary solutions to better support AYAs with cancer.
Adolescents and young adults with cancer (AYA) frequently report feelings of social isolation and a desire to access peer support. Despite this, their uptake of peer support programs is low. We investigate the factors that facilitate and impede peer support seeking among AYA.
A diverse sample of 17 AYA were purposively selected from a survey sample of AYA recruited from Princess Margaret Cancer Centre and online. Three semi-structured focus groups were conducted, co-facilitated by four patient partners. Focus groups were transcribed verbatim. Data were thematically analyzed, first inductively, and then deductively using Andersen’s Behavioural Model of Health Services Use.
Participants were on average 31 years of age and 5.1 years post-diagnosis, and most (71%) were female. AYA peer support program utilization is influenced by the interactions between individual and contextual pre-disposing and enabling (or disabling) factors, and perceived/influenced need. Predisposing factors include: previous social support experiences, fears of emotional vulnerability, and knowledge of support programs. Enabling (or disabling) factors include: time, energy, and means to attend programs, and the availability of relevant programs. Factors that influence perceived need for support are: existing coping mechanisms and emotional readiness to accept support. Andersen’s theory helps conceptualize the confluence of individual and contextual factors that shape use (or non-use) of peer support programs among AYA.
AYA peer support programs must be designed to overcome individual and contextual barriers to participation while leveraging and enhancing enabling factors.