Cancer experiences in people with an intellectual disability: A PhD thesis


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Samantha Flynn1,Nick Hulbert-Williams1,Lee Hulbert-Williams1,Ros Bramwell2
1Chester Research Unit for the Psychology of Health,2University of Chester

Abstract

Background

Increasing numbers of people with an intellectual disability (ID) are being diagnosed with cancer, but experiences of this population are seldom researched. Undoubtedly, it will be as distressing as it is for those without ID; however, additional needs may be present. This PhD thesis explored the cancer-related experiences of people with ID, and the impact on those who support them.

Method

The thesis comprises four studies: (1)A systematic review of the psychosocial experiences of chronic illness in people with ID. (2)Interviews with six people with ID and cancer and 12 linked participants (family members, Health and Social Care Professionals), using grounded theory methodology. (3)A survey of oncology nurses (n=83) regarding their attitudes, and care perceptions of four fictional patient vignettes. (4)A training intervention to improve oncology professionals’ perceptions of communicating with a person with ID.

Results

(1)There is a paucity of literature (n=4), with findings suggesting that people with ID have difficulties in understanding their illness, and recognising the signs of the onset of illness. (2)Furthermore, participants were often not involved in discussions and decisions; leading to increased anxiety and disengagement from diagnosis and treatment. The psychological vulnerability of this population is often not recognised by healthcare professionals. (3)Oncology nurses felt unconfident caring for and communicating with patients with ID; however, prior ID experience seemed to mitigate this. (4)Data collection is underway, and analysis will take place in August 2016.

Conclusion

(1)A substantial research gap was identified; thus further empirical work was necessary to address this. (2)Participants experienced many common difficulties faced by non-ID samples, however, the incidence of difficulty and unmet needs were substantially greater. (3)Caring for cancer patients with ID may intensify an already difficult role; appropriate training may lessen these effects. (4)Based on previous findings, we expect the intervention to improve perceptions of communicating with people with ID and cancer.