Lead Researcher(s): Jackie Bender
Lead Institution: Princess Margaret Cancer Centre
Co-Investigators: Norma M. D’Agostino, Adha A. Gupta, Laura Mitchell, Fuchsia Howard, Sheila Garland, Argerie Tsimicalis, Emily Drake, Karine Chaliflour, Anthony Marrato, Nikki Leigh McKean, Adriana Lombardo
ARCC Program Area(s):
Funding Term: 2018-2019
The aim of this patient-oriented research project is to determine the needs and requirements for a peer navigation digital app for adolescents and young adults (AYAs) with cancer. The specific objectives are: 1) to assess the needs and preferences among AYAs for a peer navigation app and their interest in being a peer navigator; 2) to characterize the psychosocial wellbeing of AYAs and identify the psychosocial factors associated with need for a peer navigator app; 3) to identify the preferred features and expected outcomes of a peer navigation app along with factors that would influence its optimal design and implementation.
The team conducted a sequential explanatory mixed-methods study. For objectives 1 and 2, they conducted a cross-sectional survey of 436 AYAs, of whom 217 were recruited at the Princess Margaret Cancer Centre, and 219 were recruited online through social media. The survey questions covered three domains for AYAs: 1) socio-demographic and disease characteristics; 2) needs, preferences and expectations for a peer navigation app and desire to be a peer navigator; and 3) psychosocial wellbeing using validated measures of anxiety, depression, social support, social network integration, coping and resources use.
For objective 3, three focus groups were conducted with 20 AYA participants. The focus groups examined the peer support needs and preferences of AYAs in greater depth and examined challenges to meeting peer support needs, as well as the goals and requirements of a peer navigation mobile app solution. Following the focus groups, the research team hosted a full-day co-design workshop led by the Healthcare Human Factors design team involving 10 AYAs and five healthcare professionals.