The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study
| Autor: | Jenny T. van der Steen, Jos M. G. A. Schols, Sascha R. Bolt, Judith M.M. Meijers, Chandni Khemai, Sandra M.G. Zwakhalen |
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| Přispěvatelé: | Tranzo, Scientific center for care and wellbeing, Ouderen, RS: CAPHRI - R1 - Ageing and Long-Term Care, Health Services Research |
| Jazyk: | angličtina |
| Rok vydání: | 2022 |
| Předmět: |
Advance care planning
attitude to death Palliative care Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] 03 medical and health sciences Nursing care 0302 clinical medicine Quality of life (healthcare) Nursing medicine Humans Dementia 030212 general & internal medicine advance care planning General Nursing end-of-life care Terminal Care palliative care 030504 nursing General Medicine Belongingness medicine.disease Death Caregivers quality of life family caregivers 0305 other medical science Psychology nursing care End-of-life care qualitative research Qualitative research dementia |
| Zdroj: | Journal of Clinical Nursing, 31(13-14), 1738-1752. Wiley-Blackwell Journal of Clinical Nursing Journal of Clinical Nursing, 31, 13-14, pp. 1738-1752 Journal of Clinical Nursing, 31(13-14), 1738-1752. Wiley Journal of Clinical Nursing, 31, 1738-1752 Journal of Clinical Nursing, 31(13-14), 1738-1752. WILEY |
| ISSN: | 0962-1067 |
| Popis: | Contains fulltext : 251453.pdf (Publisher’s version ) (Open Access) AIMS AND OBJECTIVES: To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations. BACKGROUND: Awareness about perspectives of people with dementia should decrease stigmatisation and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning. DESIGN: Qualitative descriptive design. METHODS: We performed in-depth interviews with 18 community-dwelling persons with dementia in South-Limburg, the Netherlands. Transcripts were analysed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines. RESULTS: Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings. CONCLUSIONS: Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life. RELEVANCE TO CLINICAL PRACTICE: This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families. |
| Databáze: | OpenAIRE |
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