Understanding Peer Support Needs of Adolescents and Young Adults with Cancer in Pediatrics
This dual-component translational research Capstone project endeavoured to improve peer support opportunities for adolescents and young adults (AYA) with cancer ages 12 to 18 years who are treated at Canada’s largest pediatric hospital, The Hospital for Sick Children
(SickKids). The project was developed based on the observation that AYA with cancer being treated in pediatric settings are not receiving adequate peer support, which is known to have significant impact on their well-being in both the short-term and long-term.1,2 Our aim was to better understand this population’s need for peer support throughout their cancer journey and explore how a potential peer support intervention could be successfully designed, developed, and implemented, once the need is adequately understood and identified. This project was designed around the Translational ThinkingTM Framework; a need was identified, which determined that a mixed methods study was the necessary next step. The first component of this project was an REB-approved mixed methods study conducted at SickKids with three stakeholder groups: 1) AYA patients with cancer, 2) parents/caregivers of AYA patients with cancer, and 3) oncology health care providers. Participants completed a quantitative survey and a qualitative semistructured audio-recorded one-on-one interview. The second component of this project, conducted in parallel, involved an exploration of the problem space by conducting a stakeholder analysis and environmental scan to understand the existing landscape of peer support. In the first component, completed between December 2018 and February 2019, 50 participants were screened and 30 participants were recruited and enrolled in the study; 10 participants per group. This report includes data analysis, results, and discussion of one study group (AYA patients with cancer), as the analysis of the other two groups is still ongoing. In the second component, 20 stakeholders in various local, provincial, national, and international settings were interviewed. Data are presented in chronological order and key learning points are summarized.
Results of the first component demonstrated that AYA with cancer ages 12 to 18 years being cared for in a pediatric setting desire more opportunities to connect with others who have experienced the same or similar journey. While they are well supported by people close to them, and appreciate the currently available resources, they still crave more information and insight about their cancer journey. Both informal and formal peer support opportunities would be beneficial. A potential peer support intervention would need to be flexible, meaning accessible at any time during the cancer journey, and facilitate face-to-face interaction, text messaging, or online platforms. Results of the second component validated our problem space (the unmet need and some of the current obstacles for the implementation of an intervention), as the desire for peer support is recognized among many other populations, regardless of age range, disease, or continent. Many other programs are being developed globally for AYA with cancer, but the needs of AYA with cancer ages 12 to 18 years within pediatrics have not been as thoroughly explored.
The next steps of this project will involve completion of data analysis from the other two participant groups and further triangulation. Ultimately, the aim is to ideate a solution using integrated knowledge translation (iKT) based on the comprehensive results of the Capstone project, to co-create a peer support intervention with AYA with cancer, and eventually implement an intervention at SickKids. This will involve sharing results with leadership at SickKids and disseminating knowledge within the institution. Upon completion of this project, findings will be disseminated through publications, for example in scientific pediatric oncology journals, and presentations at targeted pediatric oncology conferences.
Capstone Advisory Committee:
TRP Faculty Lead:
Dr. Richard Foty