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Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0002-4136-7250
Göteborgs universitet.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.ORCID iD: 0000-0003-2711-0245
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.ORCID iD: 0000-0003-3660-6306
2018 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 3, p. 1254-1260Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.

METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.

RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.

SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

Place, publisher, year, edition, pages
2018. Vol. 32, no 3, p. 1254-1260
Keywords [en]
Swedish, Bereaved family members, Cultural adaption, End-of-life care quality, Palliative, Validation
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-6639DOI: 10.1111/scs.12542PubMedID: 29148073OAI: oai:DiVA.org:esh-6639DiVA, id: diva2:1183046
Available from: 2018-02-15 Created: 2018-02-15 Last updated: 2021-12-17Bibliographically approved
In thesis
1. Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
Open this publication in new window or tab >>Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
2021 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis is in the subject of palliative care within the research field ‘The individual in the Welfare society’. The overall aim was to investigate bereaved family members’ experiences of support and care during the last three months of life for people with advanced illness. It encompasses four studies, in study I theVOICES (SF) (Views of Informal Carers – Evaluation of Services (Short Form))questionnaire was validated, and in studies II-IV a survey design was employed using VOICES (SF). The survey sample consisted of 485 bereaved family members (20-90 years old, 70.7% women) of people who had died in one of four hospitals, in two Swedish healthcare regions, between August 2016 and April 2017. VOICES (SF) was found feasible for use in a Swedish context in study I,however, the construct of some parts in the questionnaire was found not to be optimal when used in studies II-IV. Further development and validation is, therefore, recommended. The care place/care service was central for family members’ experiences of care and support. The importance of that the ill persons received care according to their needs was stressed, but the delivery of the care -with respect, dignity and empathy - was equally important. Most of the family members were satisfied with the care; however, about a fifth were not, indicating a need for improvement. The type of care, diagnosis, length of illness, educational attainment, and the relationship between the deceased person and the family member, influenced the experiences of care. This confirms that there are potential inequalities in care at the end of life. End-of-life communication and the support given to family members was not experienced as optimal. Family members expressed the importance of healthcare staff providing them with clear information, their own difficulties in recognising imminent death, and the value of a follow-up conversation with a healthcare professional who was present at the time of death. This thesis project has provided novel and important knowledge about the content and quality of care during the last few months of life, for all groups with potential palliative care needs, hence contributing to the discourse concerning quality of care at the end of life and placing care at the end of life on the agenda of the Swedish welfare society.

Place, publisher, year, edition, pages
Stockholm: Ersta Sköndal Bräcke högskola, 2021. p. 159
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 11
Keywords
Family members, quality of care, care place, care service, satisfaction, information, end-of-life communication, palliative care, end-of-life care, VOICES questionnaire, involvement in decision-making, respect and dignity, support
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-8782 (URN)978-91-985806-0-0 (ISBN)
Public defence
2021-05-28, Aulan, Campus Ersta, 09:30
Opponent
Supervisors
Available from: 2021-05-06 Created: 2021-04-28 Last updated: 2023-09-22Bibliographically approved

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O'Sullivan, AnnaAlvariza, AnetteHåkanson, Cecilia

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