Meanings of the family in the context of death and organ donation on intensive care units by Charlotte Kenten, Magi Sque, Myfanwy Morgan

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A presentation from the BSA Death, Dying and Bereavement Conference held on 19 November 2012.

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Meanings of the family in the context of death and organ donation on intensive care units by Charlotte Kenten, Magi Sque, Myfanwy Morgan

  1. 1. Meanings of the ‘family’ in thecontext of death and organ donation on intensive care units Charlotte Kenten1 Magi Sque2 Myfanwy Morgan1 1 King’s College London, Dept of Primary Care and Public Health Sciences2 School of Health and Wellbeing, University of Wolverhampton and The Royal Wolverhampton Hospitals NHS Trust
  2. 2. Abstract The family in its multiple and shifting guises is a constant in the life course but often increases in prominence at specific points, including at the end of life. We will focus on one specific end of life experience for families, the death of a relative on an Intensive Care Unit (ICU) who is clinically suitable to be an organ donor. In the UK donation only proceeds if the family provide formal consent.2
  3. 3. Abstract continuedThis paper examines the notion of ‘family’ around this time of acute bereavement and specifically in relation to breaking bad news, approaching for consent and decisions about organ donation with Black and South Asian minority ethnic groups. Qualitative research was undertaken involving semi-structured interviews with 13 donor families, over 100 interviews with ICU staff and observations across five English hospital Trusts undertaken as part of the DonaTE Research Programme. These data indicate how the ‘family’ is fluid and negotiated; beyond the immediate and usually biological family, it expands to include extended family, friends and acquaintances or contracts to core members depending on the phase of end of life care, the decisions that need to be made and closeness to death/donation.3
  4. 4. Abstract continued In contrast ICU staff, often perceived family in more rigid terms, tempered by legal definitions and practical considerations with, at times, limited or limiting cultural understandings of the role of ‘family’ at the end of life, and employed various strategies to manage the often large number of ‘family’ members and communicate with key decision makers.4
  5. 5. Disclaimer This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grant for Applied Research programme (Reference Number: RP-PG-0707-10123). The views expressed in this presentation are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.5

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