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Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England
  1. Katherine J Hunt,
  2. Alison Richardson,
  3. Anne-Sophie E Darlington and
  4. Julia M Addington-Hall
  1. Faculty of Health Sciences, University of Southampton, Southampton, UK
  1. Correspondence to Dr Katherine J Hunt, Faculty of Health Sciences, University of Southampton, Highfield, Southampton SO17 1 BJ, UK; K.J.Hunt{at}soton.ac.uk

Abstract

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers—Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses.

  • palliative care
  • health care surveys
  • epidemiologic research design
  • proxy
  • caregivers

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Footnotes

  • Contributors KJH was involved in the conception and design of the study, as well as the planning, data collection, analysis and writing up of the study, and manuscript development, submission and revision. AR was involved in planning data collection, analysis and writing up of the study, and manuscript development, submission and revision. A-SED was involved in the data analysis, interpretation and writing up of the study, and manuscript development, submission and revision. JMA-H was involved in the conception and design of the study, as well as the planning, data collection, analysis writing up of the study, and manuscript development.

  • Funding The pilot study reported in this paper was funded by the Department of Health, England.

  • Competing interests None declared.

  • Ethics approval The University of Southampton, Faculty of Health Sciences Ethics Committee.

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

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