In search of care strategies for distressed people with communication difficulties and a learning disability in palliative care settings: the lived experiences of registered learning disability nurses and palliative care professionals.

Abstract

The aim of this study was to gain an in-depth phenomenological understanding of the care strategies used by registered learning disability nurses (RNLDs) and palliative care professionals (PCPs) to identify and respond to the distress of people with communication difficulties and a learning disability (PCDLD) in palliative care settings. The objective was to critically explore the lived experiences of RNLDs and PCPs who care for distressed PCDLD in palliative care settings. A single-phase hermeneutic phenomenological study following Van Manen provided the framework for the synthesis and structuring of the hermeneutic phenomenological text. Participants were drawn from learning disability nursing homes, community learning disabilities teams and hospices. Purposive sampling was used, and 13 participants comprising eight RNLDs and five PCPs were interviewed. Data were collected by semi-structured, audio-recorded interviews, field notes and a demographic questionnaire. Hermeneutic data analysis was used. Ethical approval was gained from the University Research Ethics Panel and from individual research locations. The primary strategies used by the participants to identify and respond to the distress of PCDLD were encapsulated by seven main themes: knowing by building relationships; positivity in successful caring outcomes; humane care; moral duty of care; time to care; comfortable care environment; and future perspectives. Effective care strategies based on the above-mentioned findings can reduce the dilemma professionals encounter in addressing the distress of PCDLD and enhance their confidence to care.