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End-of-life care in intellectual disability: a retrospective cross-sectional study
  1. Katherine Hunt1,
  2. Jane Bernal2,
  3. Rhian Worth2,
  4. Julia Shearn2,
  5. Paul Jarvis2,
  6. Edwin Jones2,
  7. Kathy Lowe2,
  8. Phil Madden3,
  9. Owen Barr4,
  10. Rachel Forrester-Jones5,
  11. Thilo Kroll6,
  12. Mary McCarron7,
  13. Sue Read8 and
  14. Stuart Todd2
  1. 1 Faculty of Health Sciences, University of Southampton, Southampton, UK
  2. 2 Care Sciences, University of South Wales, Pontypridd, UK
  3. 3 Learning Disability Wales, Cardiff, UK
  4. 4 Institute of Nursing and Health Research, School of Nursing, University of Ulster, Belfast, UK
  5. 5 Department of Social and Policy Analysis, University of Bath, Bath, UK
  6. 6 School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland
  7. 7 School of Nursing & Midwifery, University of Dublin Trinity College, Dublin, Ireland
  8. 8 School of Nursing & Midwifery, Keele University, Staffordshire, UK
  1. Correspondence to Dr Stuart Todd, Health, Sports and Science, University of South Wales, Pontypridd, CF37 1DL, UK; stuart.todd{at}southwales.ac.uk

Abstract

Background Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.

Aim To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.

Design Nationwide population-based postbereavement survey.

Participants 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.

Results Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.

Conclusions Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

  • intellectual disability
  • learning disability
  • end of life
  • terminal care
  • palliative care
  • surveys and questionnaires
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Footnotes

  • Twitter @SJaneBernal

  • Contributors ST, KH and JB: conceived the study. All authors contributed to the design of the study. ST, JS and RW: managed data collection. KH and ST: analysed the data with input from PJ. KH and ST: wrote the paper with input and critical review from all authors. ST and KH: act as guarantors.

  • Funding This study was funded by Baily Thomas Charitable Fund 2781/5354.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request.

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