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Abstract
Introduction Worldwide, 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 analysis To 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.
Dissemination The 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 number CRD42016041727.
- dementia
- qualitative synthesis
- community
- family carer
- informal care
- trajectory
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Footnotes
Contributors JD, KK, IH, BH and MvK contributed substantially to the conception and design of this meta-study project, including the development of research questions, search strategies, eligibility criteria, data extraction schemes and analytic procedures. JD and KK contributed equally to the draft of this protocol. All the authors read, provided feedback for and approved the final manuscript.
Funding This meta-study is financed by the budget of the German Center for Neurodegenerative Diseases (DZNE).
Competing interests None declared.
Patient consent Not required.
Provenance and peer review Not commissioned; externally peer reviewed.