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Adaptation and validation of the VOICES (SF) questionnaire – for evaluation of end-of-life care in Sweden

Authors

  • Anna O'Sullivan RN,

    PhD Student, Corresponding author
    1. Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden
    • Correspondence to:

      Anna O'Sullivan, Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, PO Box 111 89, Se-100 61, Stockholm, Sweden.

      E-mail: anna.osullivan@esh.se

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  • Joakim Öhlen RN, PhD,

    Professor
    1. Sahlgrenska Academy, University of Gothenburg Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden
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  • Anette Alvariza RN, PhD,

    Associate Professor
    1. Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden
    2. Capio Palliative Care, Dalen hospital, Stockholm, Sweden
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  • Cecilia Håkanson RN, PhD

    Associate Professor
    1. Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden
    2. Department of Nursing science, Sophiahemmet University, Stockholm, Sweden
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Abstract

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.

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