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The bereavement experiences and support needs of family carers: a supplementary qualitative analysis of free text data from the peolcpsp research priority setting exercise
  1. Emily J Harrop1,
  2. Anthony Byrne1,2,
  3. Fiona Morgan1,3 and
  4. Annmarie Nelson1
  1. 1Marie Curie Palliative Care Research Centre, Cardiff University, UK
  2. 2Cardiff and Vale University Health Board, Cardiff, UK
  3. 3SURE, Cardiff University, UK

Abstract

Background Although grief is a natural process, in which most people learn to adjust without the need for formal support, the relationship between grief and poor mental and physical health is well established (Agnew et al., 2010). Research also suggests that there may be grief experiences and support needs which are specific to family members who have provided end of life care (eg Stajduhar et al., 2013).

Methods A research priority setting exercise for palliative and end of life care was conducted, involving a public survey of 1403 people. Respondents included patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. To fully explore the views and experiences reported by participants a supplementary thematic analysis was carried out on the free text data. This presentation reports on themes relating to bereavement.

Results Responses demonstrated a relationship between traumatic deaths, feelings of guilt and bereavement experiences. Respondents also highlighted the “void” caused by the sudden withdrawal of professional support to families after death. Communication and support needs which were identified by participants included more effective communication and emotional support around end of life care planning and decision making and continuity of care and follow up support post-death.

Conclusion This analysis demonstrates some of the specific effects that caring for a loved one at the end of life can have on grief experiences. Clinical implications are identified, namely improved communication around the time of death and more effective follow up approaches post death.

Reference

  1. Tapsfield J, Hall C, Lunan C, et al. Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners. BMJ Support Palliat Care 2016. doi:10.1136/bmjspcare-2015-001014

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