Perspectives of Youths, Caregivers, and Healthcare Providers: Exploring Various Cancer Care Experiences in Windsor-Essex Region

Background: Living with cancer presents significant obstacles during a time when youth are starting to navigate relationships, develop independence, and shape their identities. Beyond these challenges, accessing age-appropriate care is difficult, especially in regions with limited specialized youth cancer programs and services. Research also indicates that youth involvement in cancer care decision-making is often limited, leading to feelings of disempowerment. Additionally, caregiver and provider perspectives on cancer care remain underexplored. Addressing these gaps is crucial to improving support for youth, caregivers, and healthcare providers. Objectives: This study explored the lived experiences of youths and their caregivers as they received cancer care in the Windsor-Essex Region while also incorporating the perspectives of local healthcare providers caring for youths with cancer. Method: Semi-structured interviews were conducted with youths with cancer (n=2), caregivers (n=6), and local healthcare providers (n=6). Interviews were transcribed and analyzed using a qualitative thematic analysis approach. Results: Six overarching themes were generated from this study, including: (1) Impact of treatment on physical wellbeing of youths; (2) Impact of treatment on psychosocial wellbeing of youths and caregivers; (3) Quality of interrelationships amongst youths, caregivers, and providers; (4) Caregivers’ realities in supporting youths through treatment; (5) Caregivers’ perspectives on cancer care while supporting youths during treatment; and (6) Importance of providing youth-focused care and beyond. Implications: These findings can inform the development of youth-centric models of cancer care and promote age-appropriate resources to support youths with cancer, their caregivers and healthcare providers.