Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England

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.

Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

“…The study reported here sought to strengthen the evidence base concerning care at the end of life to people with intellectual disabilities, regardless of cause of death, by utilizing both a population‐based approach and an intellectual disability‐sensitive and supplemented version of a widely used end‐of‐life care measure (Dieckmann, Giovis, & Offergeld, 2015; VOICES‐SF, Hunt et al, 2017). Death among adults with intellectual disabilities in these social care settings was a relatively rare event, although people with intellectual disabilities have higher mortality rates than the general population (Dieckmann et al, 2015; Florio and Troller, 2015; Glover, Williams, Heslop, Oyinlola, & Grey, 2017; Hosking et al, 2016).…”

“…Deaths that occurred within the previous 6 months of data collection were reported to us at three time periods over 18 months. Core data were obtained at phase 1 for each reported death, and then, at phase 2, detailed follow‐up data for each reported death were sought from a named respondent, who had known the decedent, using an intellectual disability‐sensitive and supplemented version of VOICES‐SF (Hunt et al, 2017).…”

“…This phase aimed to collect data on the perspectives of staff on the care the decedent received in the last months of their life. The questionnaire consisted of a version of VOICES‐SF (Hunt et al, 2017). This measures experience of end‐of‐life care and is well tested and widely used.…”

“…The study reported here sought to respond to these challenges to provide the first population‐based account of the last months of life of people with intellectual disabilities. It recruited a large number of intellectual disability service providers across the UK so as to be able to define the supported population and examine a large number of deaths regardless of cause of death, using a validated and intellectual disability‐sensitive and supplemented version of VOICES‐SF (Hunt, Richardson, Darlington, & Addington‐Hall, 2017).…”

Improving regional care in the last year of life by setting up a pragmatic evidence-based Plan–Do–Study–Act cycle: results from a cross-sectional survey

“…The self-complete questionnaire is based on the Views Of Informal Carers -Evaluation of Services-Short Form (VOICES-SF). 29 It is a validated questionnaire to assess the bereaved relatives' perceptions of the patient's care experiences with providers and services across care settings in the last 3 months of life. VOIC-ES-SF was developed for a nationally representative cross-sectional survey to examine the quality of endof-life care in England, conducted annually for 5 years (2011-2015), 30 and has already been used internationally.…”