Abstract

This thesis examines support programs for Canadian adolescents and young adult (AYA) cancer patients and survivors, using a mixed-method approach. Research suggests two demographic trends over the past decade that are noteworthy for my study. First, cancer diagnosis rates have increased yearly. Second, survival rates have improved exponentially. Within these trends, we find a growing number of AYA cancer patients and survivors. While growing, this population has been, unfortunately, insufficiently understood. AYA cancer patients and survivors experience poorer psychological well-being, such as higher rates of anxiety and mood disorders. Psychosocial support exists to improve the well-being of AYA cancer survivors and has been shown to impact them positively. Current literature, however, confounds all cancer survivors into a homogenous group and continues to compare them to the general population. While existing research considers barriers and buffers, such as language, cultural background, migrant status and income, not enough attention has been given to understand how within-category differences factor in accessibility, not just to healthcare but also to support programs.
Accordingly, this study set out to investigate the role of language differences in access, not only to healthcare, but also to psychosocial care for AYA cancer patients and survivors. The initial goal was to test if a parallel exists in accessibility issues across primary healthcare settings and tertiary psychosocial care settings, such as those exemplified by the social-recreational services provided by charities and foundations.
Quantitative analysis using data from Canadian Community Health Surveys establish that Canadian AYA cancer survivors are a heterogeneous subpopulation. Logistic regression analyses show that language spoken at home has statistically significant results in its impact of healthcare access. Other social demographic characteristics, such as income and visible minority status appear to have a stronger significant impact on healthcare access than the variables pertaining to language.
Interviews with six survivors/entourage and three foundation representatives suggest that language does not inherently cause accessibility barriers. For instance, ease of access also stems from successful communication with trusted medical professionals, which can be achieved with trust in the medical providers and ease in communication. When a provider and patient do not struggle with language barriers, communication comes more easily. In this way, language can impact access as catalyst for trusting relationships with providers rather than a direct barrier to understanding that there is support. Age, gender, and cancer status all impact access to care and its efficacy, which is closely related to social comparison among peers. The ability to relate to other survivors seems to be dependent on their social similarities. Further studies must continue to view AYA Cancer survivors as a heterogenous subgroup and avoid limiting research to the comparison of those who have had a cancer diagnosis and those who have not.