Stability of home-based care arrangements for people living with dementia: protocol of a meta-study on mixed research

Abstract

IntroductionWorldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge.Methods and analysisTo theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes.DisseminationThe findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences.PROSPERO registration numberCRD42016041727.

Towards a middle-range theory of ‘Stability of home-based care arrangements for people living with dementia’ (SoCA-Dem): findings from a meta-study on mixed research

“…18 Open access details of the methodology were published in the respective study protocol. 27 This meta-study is registered at the International Prospective Register of Systematic Reviews (PROSPERO registration number CRD42016041727). The reporting of this publication follows the recommendations in the ENTREQ statement.…”

“…The rationale for this decision has been described elsewhere. 27 The inclusion criteria are shown in online supplemental appendix B. We included publications written in English, German or French; no time limits were set.…”

“…For details on 'qualitising', see also Dreyer and colleagues. 27 We deduced a preliminary coding scheme based on our working definition. 18 Following Thomas and Harden, 34 we extended this coding scheme and analysed the findings of the included studies in three stages.…”

“…21 Therefore, we created a search strategy in which the presence of an informal carer in the home-based care arrangement was mandatory. 27 As a consequence, most identified studies placed the informal carer at the centre of the research. Nevertheless, we are keenly aware that the perspectives of all actors (including the person living with dementia) in care arrangements are meaningful and shape the respective care arrangement, and we reflect on this conceptual bias in the discussion section of this publication.…”

“…To analyse and synthesise all these studies was time-consuming. For this reason, we did not perform the theoretical sampling as extensively as we planned according to the study protocol, 27 and the time between the last database search and the publication of this meta-study is rather long.…”