Aims
People with intellectual disability experience persistent inequities in cancer care, contributing to poorer cancer‑related outcomes. Evidence to inform coordinated, networked survivorship care for people with intellectual disability is limited. Led by an inclusive research team, this study aimed to explore cancer survivorship experiences, needs, and preferences of people with intellectual disability and the health professionals who support them in Australia.
Methods
This abstract reports findings from a larger phenomenological study exploring cancer survivorship for people with intellectual disability. Semi‑structured interviews and focus groups were conducted with people with intellectual disability with and without an experience of cancer (n = 25), and health professionals with experience supporting people with intellectual disability and cancer (n = 17). Data were analysed using reflexive thematic analysis.
Results
People with intellectual disability reported varied experiences across health and cancer care systems. Positive experiences involved being listened to, included in decisions, and supported with accessible language. Negative experiences included being dismissed, overwhelmed by information, excluded from discussions and decisions, and given limited options. The importance of understanding cancer, treatment, and survivorship relating to everyday life, autonomy, and continuity of care was emphasised.
Health professionals identified specialist allied health support (e.g. social workers), formal supports (e.g. disability services), and informal supporters (e.g. family and friends), as central to supporting people with intellectual disability and cancer. However, limited disability‑specific training, time pressures, and poor communication across cancer, primary care, specialist, and disability services hindered coordinated care. As a result, care quality often depended on individual clinician experience rather than consistent, system‑level design.
Conclusions
Cancer survivorship for this population commonly spans primary care, specialist cancer services, disability supports, and community services, yet these systems are often fragmented. Integrated findings highlight the need for accessible communication, strengthened workforce capability, and improved service integration to support equitable, person-centred cancer care.