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“YOU ONLY HAVE ONE CHANCE TO GET IT RIGHT”: CARING AT HOME FOR A FAMILY MEMBER WITH TERMINAL CANCER
  1. J Totman1,
  2. N Pistrang1,
  3. S Smith2,
  4. S Hennessey3 and
  5. J Martin4,5
  1. 1Department of Clinical, Educational and Health Psychology, University College London, UK
  2. 2Dimbleby Cancer Care, Guy's and St Thomas' NHS Foundation Trust, UK
  3. 3Barts Health NHS Trust, UK
  4. 4St Joseph's Hospice Hackney, London, UK
  5. 5Harris Manchester College, University of Oxford, UK

    Abstract

    Introduction Relatives looking after a terminally ill family member at home often face numerous challenges. Studies into relatives' experiences of home caregiving have been criticised for their descriptive nature and lack of theoretical underpinnings.

    Aim(s) and method(s) This qualitative study explored the emotional challenges faced by home caregivers, and their experiences of professional services, from the perspective of existential psychology. Semi-structured interviews were conducted with 15 recently bereaved relatives who had cared at home for a family member dying of cancer. Transcripts were analysed thematically using the Framework approach.

    Results Participants' experiences of being a caregiver and of professional support were highly varied. The analysis generated 14 themes which were organised into a framework based on Yalom's (1980) four “existential conditions”: responsibility (e.g. “being the linchpin of care”; “you only have one chance to get it right”); isolation (e.g. “being on my own”, “being held in mind”); death (e.g. “knowing but not knowing”); and meaningfulness (e.g. “finding meaning and solace in caring”). Professionals' words and actions carried great significance for relatives at this time, impacting on their experiences with respect to all four thematic categories. Healthcare services were seen as influential in helping and, sometimes, hindering them in meeting the challenges they faced.

    Conclusion(s) This study highlights the crucial importance for home caregivers of reliable and proactive professional support. Existential psychology provides a theoretical perspective from which to understand some of the complex emotional challenges home caregivers face and a framework which may usefully inform clinical practice and future research.

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