Carers’ experiences, needs and preferences during inpatient stroke rehabilitation: a protocol for a systematic review of qualitative studies

Julie A. Luker, Susanne Bernhardsson, Elizabeth Lynch, Carolyn Murray, Olivia P. Hill, Julie Bernhardt

Large numbers of people provide carer roles for survivors of stroke. Person-centred stroke rehabilitation must consider the perspectives of carers, as stroke affects not only the stroke survivor but also the quality of life and health of the carers. There is little collective knowledge about stroke carers' experiences, needs and preferences during the inpatient stroke rehabilitation process to then inform person-centred service improvements. Our objective is to report and synthesise experiences, needs and preferences of the carers of stroke survivors undergoing rehabilitation in inpatient settings. We will conduct a systematic review of qualitative studies using a thematic synthesis methodology. We will follow the Enhancing Transparency in Reporting the Synthesis of Qualitative Research Guidelines (ENTREQ) and search the following databases for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Embase, and Web of Science. No language or publication date constraints will be applied. Eligible studies will have to use qualitative methods of data collection and analysis and reported data from the carers of stroke survivors who underwent inpatient stroke rehabilitation. Studies will be eligible for inclusion if they report the experiences, needs and preferences of carers regarding inpatient rehabilitation environments, organisation, care systems, therapeutic interventions, information exchange, carer training, discharge and community service planning and other issues of relevance to their roles as carers. Study selection and assessment of quality will be performed independently by two reviewers. Any disagreement will be resolved by a third reviewer. Data will be extracted by one reviewer, tabled, and checked for accuracy by another reviewer. All text reported in studies' results, discussion and conclusion sections will be entered into the NVivo software for analysis. Extracted texts will be inductively coded independently by two reviewers and analysed in three phases using thematic synthesis. Descriptive and analytical themes will be developed. This study is expected to provide new insights into the perspectives of stroke survivors' carers. Increased knowledge about carer perspectives and preferences will inform person-centred improvements in stroke rehabilitation. PROSPERO registration number: CRD42015017315 .