The added value and unintended negative consequences of public involvement processes in the planning, development and implementation of community health services: Results from a thematic synthesis.

PURPOSE: Public involvement is widely considered a means to improve health and quality of health services. The research literature reveals ambiguities concerning added value and unintended negative consequences of public involvement processes. The aim of this study is to identify, synthesise and present an overview of added value and unintended negative consequences of public involvement processes in the planning, development and implementation of community health services. METHODS: Data from 36 peer-reviewed articles retrieved from a systematic search in the CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, ProQuest, and Scopus databases in October 2019 and updated in April 2021 were extracted. A three-step thematic synthesis was conducted involving (1) line-by-line text coding, (2) developing descriptive themes and (3) generating analytical themes. RESULTS: Two main themes along with their corresponding themes provided an overview of the added value of public involvement processes at the individual, service and political levels. Unintended negative consequences concerning individual resources, uncertainty about the effect of involvement and power differences were revealed. CONCLUSION: Added value of public involvement processes is primarily reported on an individual and service level. The added value seems to be accompanied by unintended negative consequences. Training of professional facilitators and recruitment of participants that come from vulnerable groups could help promote equality in public involvement. Unintended negative consequences need to be further explored in future evaluations in order to achieve the desired goals of public involvement.

Public involvement in the planning, development and implementation of community health services: A scoping review of public involvement methods.

Services have improved due to public involvement in the planning, development, and implementation of health services. A wide range of public involvement methods, based on highly diversified methodological approaches and conceptualisations, have been developed. However, the extensive growth of new and different involvement methods lacks consistency and promotes uncertainty about which methods to apply when, how, and why. Aiming to identify, chart and summarise public involvement methods in the planning, development and implementation of community health services, we conducted a systematic search in April 2021. Seven databases were searched: CINAHL, Cochrane, Embase, PsycINFO, PubMed, ProQuest and Scopus. The systematic facet search corresponded with the PCC framework: Patient (P), Concept (C) and Context (C). A descriptive synthesis and a thematic analysis of included studies were conducted. Thirty-nine studies met the inclusion criteria. Two main categories of public involvement methods were identified: multiple methods approaches and single method approaches involving a variety of involvement activities. The characteristics of the two categories of methods were coded in accordance with methodological approach, activity and facilitation technique. The majority of the studies` methodological approach was either participatory or community-based. A variety of techniques to facilitate group discussions, sharing of ideas, and group processes were used. The results provide an overview of the characteristics of different public involvement methods, which may inform agencies and practitioners in choosing appropriate methods to qualify the public involvement in planning, developing, and implementing community health services. Further research is needed on how to manage public involvement in the implementation of community health services. In addition, rigorous evaluation studies of the impact of public involvement methods are needed.

Living with a partner with dementia: a systematic review and thematic synthesis of spouses' lived experiences of changes in their everyday lives.

OBJECTIVES: Dementia causes dramatic changes in everyday-living for spouses. Occured changes in marital relationship, force spouses to perform more both mentally and physically. Leading to a spousal perceived burden. To improve understanding of spouses' needs, spouses lived experiences is needed. The aim was to identify and synthesise qualitative studies on spouses' lived experiences of living with a partner with dementia. METHODS: A systematic search was undertaken in January 2017. Six databases (CINAHL, Cochrane Library, Embase, PubMed, PsycINFO and Sociological Abstracts) were searched, using search terms in accordance with PICo. A descriptive synthesis and a thematic synthesis were undertaken. FINDINGS: Fifteen studies met the inclusion criteria. Three themes derived from the analysis 1) Noticing changes in everyday life 2) Transformation to a new marital relation in everyday life, with corresponding sub-themes; changes in marital relationship, management of the transitioned marital relation in everyday life 3) Planning the future. CONCLUSION: Findings provide an overview of how spouses notice changes and transform their marital relationships in everyday-life. Findings offer a deeper understanding of changes that occurs over time while the partner is living at home. Findings contribute with knowledge on spouses' experiences of changes in early-stages of dementia. Interventions supporting spouses are needed.