O'Sullivan Anna, Öhlen Joakim, Alvariza Anette, Håkanson Cecilia
Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Sahlgrenska Academy, University of Gothenburg Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden.
Scand J Caring Sci. 2018 Sep;32(3):1254-1260. doi: 10.1111/scs.12542. Epub 2017 Nov 17.
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.
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.
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.
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.
瑞典此前一直缺乏通过表达家庭成员经历来评估临终关怀的工具。因此，本研究的目的是对VOICES（SF）问卷进行改编和验证，以评估瑞典的临终关怀质量。VOICES（SF）[非正式照料者对服务的看法（简表）]是一份关于失去亲人的亲属对已故家庭成员生命最后三个月护理经历的问卷。
本研究基于翻译与回译、跨文化改编以及通过认知访谈和专业专家反馈进行的内容验证。对于认知访谈，从家庭护理机构、医院病房和养老院中有目的地抽取了35名失去亲人的家庭成员作为样本。参与者为13名男性和22名女性（年龄在20岁至90多岁之间，平均年龄66岁），他们是因生命受限疾病去世者的亲属。根据清晰度、理解度、相关性、敏感性以及替代回答/措辞，对失去亲人的家庭成员和专业专家的关注点进行了总结和分析。
内容验证中出现的主要问题与部分问卷项目的理解和清晰度有关，以及对不同回答选项或项目相关性的一些问题。只有两名家庭成员认为填写问卷会引发情绪波动，但他们仍认为完成问卷很重要且可行。
只要实现了文化适应（即仅翻译是不够的），VOICES（SF）在瑞典背景下可被视为可行。瑞典版本将可供医疗保健专业人员用于对生命最后三个月所提供护理的质量监测，并且对于研究而言，它能够在不同医疗保健场所和组织之间进行国内和跨国比较。
