Background The importance of the therapeutic relationship in the delivery of palliative care is well recognised. Little has been published on the nature or quality of relationships formed between staff and patients with intellectual disabilities despite case reports suggesting that difficulties exist in providing palliative care to this group.
Aims This study was part of a project that aimed to describe the delivery of palliative care to people with intellectual disabilities in a region of Ireland and to conduct a corporate assessment of palliative care need. We detail findings that explore the nature and importance of the quality of relationship in the delivery of care.
Methods 91 staff from palliative care and intellectual disability services participated in 16 focus groups.
Findings Staff valued their relationships with service users, and felt that the quality of their relationship affected its therapeutic potential. Participants described factors fundamental to the development of quality relationships. Palliative care and intellectual disability staff commented on the importance of trust, of continuity of relationship and of knowing the individual. However, palliative care staff admitted to difficulties in these areas when providing care to people with intellectual disabilities. It appeared that quality of care was affected in situations where staff failed to form authentic relationships.
Conclusions This study adds to our knowledge of the processes of delivery of care to people with intellectual disabilities. The description of difficulties experienced by palliative care staff gives us an opportunity to develop strategies to improve the quality of services provided.
- Palliative Care
- Intellectual Disability
- Learning Disability
- Patient Professional Relationships
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Funding This work was supported by a Research Fellowship from the Health Research Board, Ireland (grant number HSR 2005/09).
Competing interests None.
Ethics approval St Francis Hospice, Dublin and St Michael's House, Dublin.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Ethical approval for the use of the data was obtained only in relation to this study. We do not have permission to share the data more widely.