Abstract
Objectives: This study seeks to provide an understanding of the changing experiences in caregivers of end-of-life patients in Hong Kong through exploring their caregiving journey. Methods: Using longitudinal individual qualitative interviews, a total of 14 caregivers of community-dwelling elderly patients receiving end-of-life care were recruited between 2015 and 2016. A series of in-depth interviews and observations were conducted in 14 cases during the end-of-life journey. Results: A thematic analysis revealed four sequential experiential stages, abbreviated as “CAPE” that caregivers confronted: Stage 1 Certainty, (1a) lack of certainty regarding the progression of decline at the end-stage of life (1b) feelings of despair as patients’ function decreased; Stage 2 Ambivalence, (2a) feelings of ambivalence after decisions were made regarding EOL care, (2b) struggle over care responsibility within families; Stage 3 Perturbed, (3a) varied in quality of EOL care, (3b) depressed mood arisen from frequent exposure to the suffering of elderly patients; and Stage 4 Expectation, (4a) losing the caregiving role as patients showing signs of imminent death. Conclusions: These findings increase our understanding of caregivers’ in-depth experience over time that arise within the structural context of end-of-life care. Our data highlights the need for end of life related knowledge and information, provision of a caring atmosphere and communication, and professional-led detachment in creating caregiving-friendly service in healthcare system, thus as to provide support and alleviate stress for caregivers with their critical responsibility and role during the course of end-of-life care.
Highlights
IntroductionThe implementation of home care is being encouraged by specialists in palliative care and geriatric services
We developed our interview guide with semi-structured and open-ended questions, which encompassed our inquiry into stress in EOL caregiving
Warrants future research to evaluate whether supplementing care with other elements, such as social care and public education, could reduce stress in family caregivers and strengthen cohesion among family members. This longitudinal case study represents the first attempt to gain a deep understanding of the stressors experienced by caregivers during their care journey in an EOL care context
Summary
The implementation of home care is being encouraged by specialists in palliative care and geriatric services These developments may presuppose the readiness of families to deliver end-of-life (EOL) care at home, which hinders achieving a sufficient level of quality and standard of care. In recent years in various countries, mental [5,6,7], physical [6], financial [8], and social stressors [9,10] have been frequently reported by family caregivers of dying individuals, signaling the importance of seeking to better understand their manifestation. In order to support family members to provide care in the community, this study aims to increase our understanding of the caregivers’ experience along the end of life journey to strengthen interventions and further enhance policy formulation to support “aging well in place”
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