NDLI: Effective approaches to public involvement in care home research: a systematic review and narrative synthesis

Content Provider	Springer Nature : BioMed Central
Author	Burgher, Tanisha Shepherd, Victoria Nollett, Claire
Abstract	Background Public involvement (often referred to as patient and public involvement or PPI) integrates the voices of the public in health and care research. However, groups such as care home residents are often excluded from involvement opportunities due to the complexities of involving people with additional care and communication needs. Despite a range of approaches being used, there is little understanding about how best to incorporate their experiences, and those of other care home stakeholders, into the design and conduct of research. Objective A systematic review was conducted to identify PPI methods that better meet the specific needs of care home stakeholders. This was undertaken by (1) outlining effective PPI approaches used in care home research and the key stakeholders involved; (2) describing the role of PPI in different care home contexts and (3) identifying stakeholders’ experiences and attitudes towards PPI in care homes. Methods Databases CINAHL, Embase, MEDLINE, PsycINFO and Scopus were searched for English language papers from inception to November 2021. A narrative synthesis approach was utilised to organise the extracted data into five themes. Results The search initially yielded 2314 articles (following de-duplication), with 27 meeting the inclusion criteria. Articles reported a range of input from stakeholders (including residents, staff, relatives and community stakeholders), with the impact of PPI varying according to the type of care establishment and research context. The experiences and reflections of stakeholders’ about their involvement in care home research varied, with some studies offering first-hand accounts compared with summaries from researchers. Some articles explicitly evaluated the effectiveness of the PPI approach using specific outcome measures whilst others indirectly described the impact of their approach. Five themes were identified as characterising an effective PPI approach: (1) valuing stakeholders’ perspectives, (2) awareness of the multi-faceted research context, (3) ensuring inclusivity and transparency, (4) maintaining flexibility and adaptability and (5) utilising resources and wider support. Conclusion Effective PPI in care home research requires researchers to create person-centred opportunities to adequately involve groups with physical and cognitive impairments. The findings led to the creation of evidence-based practical recommendations to support future involvement opportunities and help researchers develop strategies for inclusive opportunities for involvement. Systematic Review Registration: The review was prospectively registered on PROPSERO (CRD42021293353).
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-023-00453-2.pdf
Ending Page	19
Page Count	19
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-023-00453-2
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-06-02
Access Restriction	Open
Subject Keyword	Medicine Public Health Care home residents Disabled adults Long-term care facilities Nursing homes Older adults Person-centred opportunities Public involvement Stakeholder involvement Systematic review Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Health Professions Health (social science)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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