How do community nurses make sense of their experiences of providing end-of-life care for patients with dementia? An interpretative phenomenological analysis

Abstract

Aim: This research study aims to explore first-hand experiences of community nurses providing end-of-life dementia care (EOLDC) and the meanings they attribute to their experiences. Literature Review: An integrative review was conducted to gain an understanding of prevailing research and prevailing debates in EOLDC. Three themes emerged from the review namely; challenges in forming a therapeutic relationship in EOLDC, lack of specialist knowledge and skills in EOLDC and death anxiety and stress in EOLDC. Methodology and Methods: The study utilised a qualitative research approach; specifically, Interpretative Phenomenological Analysis (IPA). A purposive sample of six qualified community nurses with experience nursing terminally ill patients with dementia was recruited. Data were collected using face-to-face semi-structured interviews, audio taped and transcribed for analysis. Rather than an interview schedule, interview themes were utilised. Data were analysed in line with IPA, and transcripts were read multiple times. Emergent themes from individual transcripts were clustered into subordinate themes. Themes observed across multiple participant transcripts were clustered into superordinate themes. Findings: Findings from this study highlight the following superordinate themes: 1) pride and pleasure, 2) it is overwhelming, 3) objectification, and 4) upskilling. The superordinate themes are supported by the following ordinate themes: ‘it is gratifying to be a nurse’ and ‘there is no better feeling’; ‘it is stressful’ and ‘anguish and bad feelings’; ‘syringe driver’ and ‘that’s probably my coping mechanism’; ‘before it was just cancer’ and ‘a little more training’. Recommendations: Recommendations for professional practice emerging from this study are; use of the conceptual frame work in supporting nurse education in EOLDC and suggestions for policy makers to consider generic nurse education to bridge the skills gap highlighted in this study. Conclusion: This study showed that there are lines of tension in EOLDC. Although nurses found their work rewarding, they also claimed that it simultaneously exposed them to work-related stress, resulting in the use of self-care strategies to mitigate the consequences of the emotional labour involved. Finally, this study highlighted a gap in specialist EOLDC knowledge and skills among community nurses.