Arrey, Sally Ketchen (2014) Lived Experiences of Registered Learning Disability Nurses and Palliative Care Professionals in Caring for People with Communication Difficulties and a Learning Disability Experiencing Distress in Palliative Care Settings: A Hermeneutic Phenomenological Study. Doctoral thesis, University of Huddersfield.

Learning disability (LD) affects around 2.5% of the population in the United Kingdom. Yet, the phenomenon of caring for people with communication difficulties and a learning disability (PCDLD) experiencing distress within palliative care settings is not fully understood.
This study aims to gain an in-depth phenomenological understanding of how Registered Learning Disability Nurses (RNLDs) and Palliative Care Professionals (PCPs) identify and respond to the distress of PCDLD in palliative care settings.
The objectives are: (a) to critically explore the lived experiences of RNLDs and PCPs who care for PCDLD experiencing distress in palliative care settings; and (b) to critically explore factors which determine how PCDLD express distress in palliative care settings.
Hermeneutic phenomenological methodology incorporating a constructivist perspective was followed. Purposive sampling was used to capture professional and demographic attributes from LD nursing homes, community LD teams, and hospices. Thirteen participants consisting of eight RNLDs and five PCPs were interviewed.
Data was collected by semi-structured, audio-recorded interviews, field-notes, and demographic questionnaires. Data analysis was thematic following Van Manen. Ethical approval was gained from the university Research Ethics Panel and from individual research locations.
The findings indicated that Knowing by building relationships; Positivity in successful caring outcomes; Humane care; Moral duty of care; Time to care; Comfortable care environment; and Future perspectives encapsulate the primary strategies used to identify and respond to the distress of PCDLD. An essence statement portrayed the understood meaning of the fundamental nature of participants’ experiences of caring for PCDLD. The essence statement also informed both the development of a ‘New Theoretical Model of Palliative and End-of-care for PCDLD within Palliative Care Settings’, and a prototype ‘Checklist to enable social and healthcare professionals to self-evaluate their personal professional practice and the holism of care provided to PCDLD in palliative care settings’.

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