The lived experience of adolescents and young adults with cancer across the illness trajectory: challenges to occupational role participation

Adolescence and young adulthood can be a challenging time. Gaining social and financial autonomy, developing mature peer and romantic relationships, and embarking on career paths are all considered normal developmental stages of this population. When intersected with a cancer diagnosis, these developmental stages have the potential to impact on daily life for the young person, and particularly on their occupational role participation. Although occupational therapists currently have a role in the provision of cancer care services for this population, research regarding this role is limited. More specifically, no research has focussed on cancer’s impact on the young person’s occupational role participation, particularly along the disease trajectory (diagnosis, treatment, survivorship and palliation). The purpose of this study was to gain an in-depth understanding of the scope of occupational therapy in adolescent and young adult cancer care along the disease trajectory, and to highlight the context of Australian occupational therapy within this area of care. An additional purpose was to investigate the experiences of occupational role participation of the young person with cancer, along the disease trajectory. This research was conducted in four stages, as detailed in the following paragraphs. Stage one was a scoping review of available literature regarding the scope of practice and evidence base for occupational therapy, across all stages of the cancer trajectory (diagnosis to palliation/survivorship), and throughout the lifespan. This review included evidence from five electronic data bases, and included all forms of literature, all cancers and all ages. No restrictions were placed on origin of papers. The Arksey and O’Malley (2005) framework for scoping reviews was followed. The 89 papers reviewed showed occupational therapists’ roles to be diverse, but papers were mainly descriptive in nature, with minimal evidence of intervention outcomes. Most of the literature focused on adult samples, with few considering children, adolescent, or young adults. Most papers focused on one stage of the cancer disease trajectory, and none addressed the disease trajectory in full (from diagnosis through to a person either living beyond cancer or experiencing the palliative stage of the disease). Stage two involved a longitudinal case study. The aim was to provide insights into the impact of a cancer diagnosis on occupational roles, along the disease trajectory (diagnosis to palliative stage), of one young adult. Over the course of three years, five semi-structured interviews, layered with photo elicitation, were conducted with a young woman, Ruby (pseudonym). Findings identified the need for Ruby to: adjust perceived life plans; change life roles; and manage the behaviour and expectations of others. Stage three was a two-phase qualitative study, utilising semi-structured interviews layered with photo elicitation. The aim of this study was to better understand the consequences of living beyond a cancer diagnosis for the young person, with a particular focus on participation in, and choice of, occupational roles. Four young people in the survivorship stage of a cancer journey were interviewed, twice each, over a 12-month period. Findings showed that, although the challenges related to cancer treatment were coming to an end, cancer continued to influence the young peoples’ occupational role participation. The final stage involved a national online cross-sectional survey of Australian occupational therapists with experience in cancer-specific palliative care for the young person. The aim of this study was to identify the perceptions of occupational therapists working in adolescent and young adult cancer palliative care, and to highlight therapist perceived occupational needs of the young person with a life limiting diagnosis of cancer. Results revealed specific gaps in the provision of care including the need for age-appropriate care to allow for developmentally appropriate occupational role participation. Findings also demonstrated several challenges to provision of care by the occupational therapist, including lack of funding, age-specific facilities, and knowledge of healthcare professionals and consumers about the occupational therapy profession and services offered. A specific example was the need for further development of referral pathways to occupational therapy. Overall, the findings of my thesis have added to the available cancer literature for this age group by highlighting and identifying the impact of cancer along the disease trajectory on occupational role participation for the young person. Findings from this research will assist occupational therapists to understand the current scope of their role in cancer care for this population and gain insight into the impact of cancer on occupational role participation for the adolescent and young adult living with cancer along the disease trajectory; to assist the young person to engage in their required and chosen occupational roles as their cancer journey unfolds.