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AbstractPeople with intellectual disabilities are increasingly being diagnosed with cancer due, in part, to increases in life expectancy for this population. Despite the growing number of people with cancer and intellectual disabilities, the cancer-related experiences of people with intellectual disabilities are under-researched. Person-centred approaches to research are needed to better understand the needs and psychosocial outcomes of people with cancer and intellectual disabilities. This thesis aims to better understand the cancer-related experiences of people with intellectual disabilities, and the impact on the people who support them. The thesis comprises four related studies: (1) a systematic review of psychosocial experiences of cancer in people with intellectual disabilities; (2) a qualitative study of cancer experiences in people with intellectual disabilities using thematic analysis informed by grounded theory; (3) a survey of UK oncology nurses’ attitudes and care perceptions towards people with intellectual disabilities; and (4) a feasibility study of an intervention to improve healthcare professionals’ perceptions of communicating with people with cancer and intellectual disabilities. Five themes emerged from the ten papers included in the systematic review: delayed diagnosis; information, communication, and understanding; negative psychological consequences; negative physical consequences; and social support. Six of the ten papers included data from the same ethnographic study of 13 people, highlighting a paucity of empirical research regarding the psychosocial cancer experiences of people with intellectual disabilities. The qualitative study indicated that people with intellectual disabilities were often excluded from conversations about their diagnosis, treatment, and ongoing care, and expressed confusion and anxiety about their cancer. Attempts to protect them from distress inhibited communication, but where additional support was offered, participants engaged more meaningfully in their experience and this should, therefore, be encouraged. In the qualitative study, oncology nurses were reported to be important figures in the care of patients with intellectual disabilities. The survey of oncology nurses highlighted that caring for cancer patients with intellectual disabilities may intensify their already difficult role; however, previous experience may ameliorate negative consequences. This sample identified their need for training about communicating with people with intellectual disabilities. The first three studies informed the development of a novel, brief, online, video-based intervention for healthcare professionals working with people with intellectual disabilities and cancer. The feasibility trial of this intervention indicated that there were problems with recruitment, high attrition, and intervention adherence. These problems were, most likely due to participants finding the content and delivery method to be unacceptable. It is clear that the intervention is not feasible in its current format, and that further theoretical and modelling work is needed before the intervention is feasibility tested again ahead of a definitive trial. This body of work has demonstrated that people with intellectual disabilities and cancer face multiple barriers to accessing cancer care, including informative and understandable communication with healthcare professionals. With appropriate support, psychological and physical outcomes can be improved for people with intellectual disabilities and cancer, but caring for people with cancer and intellectual disabilities can be challenging for paid and informal carers, and oncology staff. Difficulties with communication are bi-directional, and improving communication might be an appropriate first step to improving cancer experiences for this population, but developing effective interventions presents numerous feasibility challenges.
CitationFlynn, S. E. (2018). Cancer Experiences in People with Intellectual Disabilities. (Doctoral dissertation). University of Chester, United Kingdom.
PublisherUniversity of Chester
TypeThesis or dissertation
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