Table 2 Overview of the involvement methods and their implementation of included studies
Author | Aim of involvement | Role(s) of involved persons | Phase(s) of research mainly reported on | Form of involvement | Frequency of meetings with involved persons | Description of activities |
|---|---|---|---|---|---|---|
Baur and Abma, 2012 [35] | To develop a shared vision and enhance empowerment among residents to improve life in the residential home | Resident involvement as partnership | Executiona | Governance and conduct | Over a 7-month period, 8 homogeneous meetings were held | Involvement method: homogenous action group Five phases of non-linear progression (i.e., not straight progression from little influence to feeling empowered) 1. Phase 1: talking about experiences of living in the residential home and setting the agenda for the research project and improvements in the home. Picture cards were used to start the conversation 2. Phase 2: getting to know each other and exploring shared experiences about the meals 3. Phase 3: feeling of empowerment through discovery of shared discontent about the mealtime experience 4. Phase 4: repeated sharing of negative experiences resulted in stagnation. Following appreciative inquiry, the group made a paste-up of ideal meals which changed the group dynamic 5. Phase 5: turning discontent into constructive advice and partnership with service providers for improving meals • The action group was supported and facilitated by the first author • A meeting was arranged in which 60 other residents were involved to discuss the ideas for improvements • Four heterogenous dialogue meetings with managers and kitchen staff were organized. Through this dialogue the group developed a partnership, based on the common aim to improve the well-being of residents, with those responsible for making changes in the organisation |
Beukema and Valkenberg, 2007 [36] | To develop a shared vision in order to implement contextualized demand-driven care | Co-researchers | Translation | Governance and conduct | n/a | Involvement methods: discussion sessions and working groups In each of the five locations initial contact was with management, who investigated the situation and were responsible for the implementation process. Steering committees that were responsible for the research process were set up at every location. Three stages of exemplary action research were followed: the thematic stage, crystallization stage, and the exemplar stage 1. Preparation of thematic stage: a training was organized in order to challenge the superiority of dominant view of scientific knowledge and to discuss location-specific and shared questions 2. Stage 1 Thematic stage, getting to know the situation under study: Inventory of themes that represent a shared understanding and formulating a shared vision, through interviews in an open interview setting, participatory observations, and discussion sessions. A report was prepared with a thematic representation and the results were discussed in sessions 3. Stage 2 Crystallization stage: researcher and co-researchers define the most important theme, the exemplar. Individual coaching and group discussions are important to increase reflexivity. When consensus is reached, the co-researchers draw up a plan in working groups to deal with the exemplar 4. Stage 3 Exemplar stage, implementation of developed plan: processes of intervention and evaluation are central to this stage. Methods are participatory observation, intervision, and discussion. In this stage researchers prepare to withdraw and teach co-researchers to deal with their situation themselves • Researchers held multiple roles such as discussant, trainer, coach, and consultant |
Brown et al., 2017 [37] | To provide feedback on recruitment plans, themes arising from data analysis, study plans and involvement in dissemination | Community representatives | Execution and translation | Governance (and conduct in workshop) | Community representatives were invited to all research meetings | Involvement method: research team meetings and workshop The two community representatives were invited to be involved in all aspects of the project for which specific training was not considered necessary 1. Research group meetings, hard copies of all meeting agendas, minutes, transcripts of raw data, and field notes were provided 2. Informal meetings and telephone conversations throughout the project period 3. Email discussions were shared with one community representative, except for discussions concerning technical aspects of the project 4. Community representatives were involved in scientific conferences 5. Community representatives were interviewed to evaluate the public involvement and were involved in a workshop to generate a set of recommendations for public involvement. One community representative provided feedback |
Clarke et al. 2018 [24] | Collaborate with people living with dementia as co-analysts in the coproduction (interpretation) of knowledge and re-presenting experiences within the data set | Co-analysts | Execution | Conduct | Four regionally located groups. Each group met monthly for 2 h on 4 occasions | Involvement method: secondary data analysis of four workshops with co-analysts Prior to the secondary data analysis with co-analysts, the academic researchers set up a coding framework for data analysis through two theoretical lenses. Data was analysed and a coding model was designed 1. In the first and second workshop, quotes from the data were discussed 2. In the third workshop two theoretical lenses were discussed using picture and word cards that correspond with the theories. A storyboard approach was used with two vignettes based on the data. The groups discussed how the theories were helpful to explain what was happening in the storyboard examples 3. After each workshop the academic researchers reflected on the process and how this changed their understanding of the data and theories. Metaphors used by attendees in the first three workshops were collected 4. In the fourth workshop the list of metaphors and metaphors interwoven with vignettes of two people were presented to check the academic researchers’ understanding of the metaphors 5. Metaphors drawn from the workshop were used to reinterpret the data and integrate it with theory • Workshops were facilitated by familiar local staff |
Di Lorito et al. 2020 [13] | Ensuring that the study was empowering for the involved persons living with dementia (dementia appropriate) and inclusion of lived experience | Co-researchers | Translationa | Governance and conduct | 7 one-hour interviews, preparatory meetings and training, data-analysis session | Involvement methods: co-research interviews and data-analysis workshop 1. Involvement in protocol design: lay researchers provided feedback on the protocol and how to conduct interviews with people living with dementia 2. Development of the interview schedule: discussion on interview topic guide to ensure that the interview questions were relevant, meaningful, and jargon-free for persons living with dementia 3. Preparatory and iterative training sessions: co-designing co-researcher role and tasks, collective decision that lay researchers required interview training, and making decisions on practicalities of the interviews (lay researchers had previously received training on data-analysis) 4. Co-conducting the interviews, lay researchers involved in half of the interviews: based on the concepts 'expert-by-training' and 'expert-by-experience', the academic researcher asked questions about personal beliefs and motivation, the lay researchers asked questions related to emotional support and independence. Lay and academic researchers travelled together to the participant's home to brief and debrief. The team kept personal diaries regarding methodological issues, benefits, and challenges of co-research 5. Involvement in data analysis: both academic and lay researchers read the interview transcripts, independently annotated their comments and identified themes. Academic researchers merged the annotations and themes to generate a tentative code book. Lay researchers gave feedback 6. Lay researchers were involved as co-authors in all study outputs, including publications, the evaluation protocol, presentations, and seminars 7. The team analysed the personal diaries in the home of one of the lay researchers and co-produced a Research Cycle Model for good practice in co-research |
Involving carers of persons living with dementia as co-researchers throughout the research cycle | Co-research | Preparation, execution, and translation | Governance and conduct | n/a | Model for good practice in co-research with carers of persons living with dementia (for complete model see [13]) 1. Think and plan: make plans for long-term collaboration early in the research, recruit persons based on skills etc. and with different characteristics, co-design co-researcher role 2. Prepare stage: provide iterative training based on needs and establish clear research roles 3. Gather stage: travel together to interviews, make certain that everyone is comfortable, ensure data integrity, provide emotional support to co-researcher 4. Analysis stage: ask co-researchers to independently analyse the data 5. Write and share impact stage: invite co-researchers to co-disseminate findings (i.e., co-author publications and presenting at conferences etc.) | |
Flavin and Sinclair, 2019 [25] | Bringing the perspectives and voices of people living with dementia and care-partners 'to the table', through advising the research team on the design, conduct, and implementation of the research | Consultation and advice | Execution and translationa | Governance | Quarterly meetings for 2 to 3 h in a 3-year research project | Involvement method: advisory groups Three 'supported decision-making interest groups' acted as advisory groups, supported by service provider organisations who partnered on the project 1. Meetings were facilitated, recorded and minutes with feedback provided to the broader research team 2. Providing feedback through full group and small group discussions, with consensus-based approach 3. Agreements about the confidential nature of the meeting discussions and materials • Consumers were encouraged to attend meeting with a support person • Accessible meeting materials were provided in advance (key discussion topics and questions, larger font, graphics, and space for comments, and provided in hard copy by post) and regular breaks in meeting agenda |
Froggatt et al. 2015 [38] | To support researcher and residents and facilitate recruitment and conduct of interviews | Engagement in fieldwork | Executiona | Conduct | 30 interviews, 1–5 introduction meeting, short support and follow-up meetings, 3 research team meetings | Involvement method: assistance in interviews and focus groups Research activities of the five involved persons in fieldwork: recruitment, interview facilitation, resident support, and research support 1. Recruitment: involved persons assisted in the introduction of the study to care home residents 2. Interview facilitation: (17 of 85 interviews) prior to the interview, involved persons spent time with residents to remind them about the research and interview. Involved persons supported 13 of 56 interviews with primary care staff 3. Resident support: involved persons reflected with residents how they experienced the interview, residents could ask questions and raise additional points 4. Researcher support: involved persons supported researchers during two focus groups with staff (welcoming staff, distributing information, recording, note taking) • Three project team meetings: introduction, discussion on experiences and expectations, making plans for involvement in dissemination • Site-specific preliminary meetings to introduce involved to the project • Short preparation and follow-up support meetings prior to fieldwork activities • Attendance of involved persons at final Validation event (no description) |
Giebel et al., 2019 [26] | Advising and providing feedback on different aspects of the research programme | Consulting and collaborating role | Preparation and execution | Governance | Five-year research programme Small reference group: 6 biannual meetings Virtual lay advisory group: 2 email consultations | Involvement method: small reference group Follows a cyclic process of involvement: research design, selecting elements for feedback→ reference group meeting, providing feedback on impact of previous input, discussing new research ideas→ writing and distributing meeting notes; integrating feedback into research→ ethics application 1. First meeting: feedback on proposal, protocol, and research design 2. Second meeting: discussion on effective methods, services in dementia home support, and effective components 3. Third meeting: discussion on carer support services and elements that were helpful and less helpful, accessible discussion through metaphor of ingredients in a cake, consultation on acronym of the overall research programme 4. Fourth meeting: contributing to economic model of the programme through a preliminary model 5. Fifth meeting: feedback on a memory manual 6. Sixth meeting: discussion on experiences of memory clinic and hospital visits (part of the economic model group) Involvement method: virtual lay advisory group 1. Carers were asked to give feedback on the understandability of the information sheet and consent form, and they were consulted on a questionnaire 2. Consultation on understandability of five case descriptions, which will be used for research purposes with both carers and staff |
Goeman et al., 2019 [27] | To share expertise and lived experiences of dementia | Advisors | Execution | Governance (and conduct in workshops) | Working group: monthly meetings during a period of 2 years Reference group: quarterly meetings during a period of 2 years | Involvement method: working group, reference group and workshop Both groups focused on the progress, aims of the study, and defined terms of reference. The terms of reference are: the purpose of the group, what was expected from members, the objectives and areas that the research would explore, a project timeline, meetings and agendas 1. Working group: guided the development of an overarching evaluation philosophy, assisted in refining the protocol for undertaking a systematic review, devised interview questions, analysed literature review outcomes and interview data 2. Reference group: supported the working group, through providing advice with regard to feasibility, applicability, policy, funding implications, and appropriate language utilisation for reporting outcomes and recommendations 3. Both groups came together for two interactive annual workshops: - First workshop: a summary of the systematic review and a list of models were provided two weeks prior to the meeting. In the meeting the group developed a framework - Second workshop: discussion on selection of summaries of interviews and mapping of models against developed framework - The results were collated by the research team and a draft report was sent to all involved persons for feedback |
Gregory et al., 2020 [28] | To provide feedback on study experiences of the clinical trial, study paperwork and contribute to study planning | Research partners who give advice | Execution | Governance | All, 5 country-wide panels and ? local panels, met twice a year (except one which was held four times a year), all panels met at least twice 2 central panel meetings | Involvement method: local involved persons panels and central panel The EPAD involved persons' panels included a nested panel structure, in which local panels functioned independently and fed into a countrywide panel. Nominated members from these panels (without staff involvement) formed a central panel. The central panel fed directly into the work of the EPAD ethics workgroup and the General Assembly of the project 1. Countrywide and local panels: - Panel meeting agendas were developed by the involved persons and led by the panel chair, agendas consisted of: dementia moments (discuss recent news), update of study progress and the proof of concept trials. Additional topics and tasks were: sustainability and longevity of the project, feedback on study visit, documentation review (website, consent forms, and information videos), and communication on potential risk factors discovered through the EPAD study - Panel members contributed to scientific conferences, co-hosting a webinar on PPI, and were involved in a meeting to plan the future of the EPAD study - Staff attended to organize the logistics of the meeting, provide study updates, and answer specific questions from the panel, facilitate discussions if required and to take minutes of the meetings 2. Central panel: co-ordinated activities across the local panels and provided input for the development of the study (and future direction of the project) |
Hanson et al., 2007 [29] | Discuss user needs, informing development of multimedia platform, reviewing concept of platform, provide feedback on platform and evaluation of support programme | Partnership through consultation | Execution | Conduct | 9 months: weekly in first 4 months, and bi-weekly or monthly subsequently, 1 user group reviewing meeting 12-week training/support programme in three-hour weekly sessions with discussions in 5 groups, 1 focus group | Involvement methods: discussion groups, reviewing platform workshop The design process is cyclic, iterative (development, evaluation, agreement) and comprises three phases 1. Identifying user needs: - Consultation through discussion groups informed by international literature on users' needs and preferences to develop the multimedia platform - Facilitated by two project nurse facilitators 2. Early programme development: - Data from discussion sessions were used to develop the multimedia platform - The multimedia platform was reviewed by the user group by projecting the content on a large screen. Comments were subsequently integrated into the programme - A 12-week support group programme was developed by the researchers 3. Testing and refining: - In-depth interviews with people with early stage dementia (PWED) and next of kin prior to the start of support group - All involved persons (PWED and spouses) completed the 12-week support programme facilitated by the project dementia nurses and a multimedia technician - The multimedia programme was installed in all involved persons’ homes - During the 12-week programme the involved persons provided feedback in discussions and the facilitators took notes on strengths and weaknesses, feedback was again incorporated and changes made to the multimedia programme - At the end of the 12 weeks, PWED and family members took part in a focus group to evaluate the support programme |
Hassan et al., 2017 [30] | Researchers were not interested in personal views, but in the views of possible future research participants. Discuss and test wearable health devices, sharing user experiences, make recommendations for future research | Advisors | Preparation | Conduct | 3 workshops per group, consisting of 2 sessions over the course of 1–2 weeks and voluntary 1 week at home device testing between sessions. Informal individual sessions with people with mild cognitive impairments | Involvement methods: interactive workshops and drop-in sessions 1. Session 1: introduction to types of dementia research and questions, introduction to devices, discussion on using devices for research, opportunity to use and test devices, and invitation to borrow devices to test at home 2. Device testing period (1 week): use the device, reflect on ease of use, wearability, and barriers to use 3. Session 2: discussion on and sharing of experiences using the devices at home, considering which devices would be most suitable for different research participants in the future, reflect on user support requirements, data governance and privacy issues • Meetings were supported by discussion guides and by a series of hypothetical exemplar research scenarios. Activities were designed to be interactive, visual, and delivered at an appropriate pace for attendees to enable their involvement • At the workshops, notes were taken by assistants, and attendees recorded their ideas on flipcharts and post-it notes. After each workshop the facilitators collated the information. These reports and the overall summary report were shared with workshop attendees to check for accuracy |
Mann and Hung, 2019 [31] | To offer the perspective of a person living with dementia to inform the research design and process, ensure the research benefits patients with dementia, raise awareness and change people's attitudes about patients with dementia | Advisor and co-researcher | Execution and translation | Governance and conduct | Every 4–6 weeks meeting in coffee shop over an 18-month period | Involvement method: co-research meetings in coffee shop The process included a spiral of iterative cycles of shared goals identification, joint reflection, collective action, evaluation, and modification 1. Pre-research phase 2015 - The researcher and co-researcher met and had discussions about the research proposal, purpose of research, and role of co-researcher - The researcher and co-researcher worked together on the ethics application to ensure the consent process was appropriate and meaningful for patients with dementia 2. Phase 1: Engage & Look - Environmental assessment with co-researcher and family advisors, and staff to inspire and engage staff - Meetings with co-researcher to make agreements and plans on research design and activities, conversations were guided by reflexive questions, in-between communication via email to work on documents 3. Phase 2: Think & Act - Dementia education and action activities delivered by co-researcher and staff (peer teaching) - Co-develop knowledge translation tool with co-researcher, family advisors and staff - Regular research meetings with co-researcher 4. Phase 3: Evaluate & Modify - Conference presentations by researcher and co-researcher to share research findings and receive feedback - Publications co-authored by researcher and co-researcher to contribute to literature |
Poland et al., 2019 [32] | To inform and conduct research in collaboration with experts by experience | Co-applicants, advisors, and co-researchers (interviews and data analysis) | Preparation and execution | Governance and conduct | Co-applicants: n/a PPI advisory group: 7 advisory group meetings, 8 management meetings Co-researcher data collection: 12 interviews Co-research data analysis: 2 half-day workshops | Involvement methods: advisory group, co-research interviews and data-analysis workshops 1. Co-applicants: discussed research proposal, writing plain English summary, produced CV 2. Advisory group: overview of public-facing documents, support, and advice to 3 PhD projects, suggested research-focused questions, comment on newsletters and developing information 3. Co-researcher data collection: with researcher undertook 12 interviews, co-researchers led the interview with the help of the academic researcher. Provided comments on a selection of full transcripts 4. Co-research data analysis (with persons living with dementia), facilitated by the involvement coordinator, research staff and a qualitative researcher. Two half-day workshops, four people living with dementia at each workshop and four short focused activities - In two activities, the meaning of single sentences were discussed and codes developed - In the third 'interpretation' activity, co-researchers discussed short case studies - The fourth activity was a coding activity which involved selecting a theme that best related to a short phrase |
Shura et al. 2010 [39] | To encourage critical and collective reflection about ideas for community improvements in long-term care, with residents as experts of long-term care life, who focused on the tasks of identifying strengths and problems in their community; to develop ways to improve community life | Visionaries | Execution | Governance and conduct | 7 resident action groups, meeting 1 h per week for 4 months | Involvement method: seven unit-specific resident action groups 1. Residents are the central members of the groups, because of their lived experience and expertise regarding long-term care life. Family members and staff had supportive and collaborative roles as their experience with long-term care is qualitatively distinct from residents' views 2. Each resident group had two regular facilitators whose role was to encourage and mediate collective conversation, and to support the experts' collective process of critique and vision 3. Each resident group met on their own unit 4. Each resident group was based on interests and group dynamics that residents identified themselves; they discussed and analysed areas in need of improvement in a collective forum (examples are: lowering the bulletin boards, improving the dining experience, strengthening relationships among residents, family and staff, and opportunities for meaningful social engagement) |
Stevenson and Taylor, 2019 [33] | Co-researchers were involved in identifying themes, with the aim to enhance validity by applying multiple perspectives to data analysis | Co-researcher | Executiona | Conduct | 2-h data-analysis session | Involvement method: data-analysis session mid-way through data collection 1. Presentation to introduce the research project and clarification of co-researcher role. Sessions were attended by facilitators of service user panel. Short coffee and chat break was taken mid-session 2. Highlighters and pens were provided for the group to mark any salient words or phrases and to make notes 3. Ideas and comments were written on a flipchart as a visual reminder for the group 4. Short coffee and chat break was taken mid-session 5. Three interactive 20-min exercises, one of which focused on analysing definitions and two concerned risk communication; all discussions are guided by the connection of the data to own experiences - Quotes from interviews were presented orally and through written handouts, after which there was time for individual reflection. This was followed by a group discussion using prompts to elicit views on what the group members felt was interesting and how quotes from the interviews were connected - Excerpts from interviews with healthcare professionals and family carers were presented through role play between the facilitators and in printed handouts. Discussion through prompts. In order to remind the group of the definition of risk, the definition was presented in bold print in handouts |
Swarbrick and Doors 2018 [23] | Developing a framework for co-research through reflection on own experiences in research | Co-research | Executiona | Governance and conduct | 3 inquiry/discussion groups, each group met 8 times | Involvement method: inquiry groups The process of developing the COINED model followed four phases of co-operative inquiry. The facilitator was responsible for the exchange of ideas developed in the independent groups Phase 1: Reflection Based on prior experience with involvement in research the groups decided to explore ways of involving people living with dementia as co-researchers Phase 2: Action The three inquiry groups explored the research process through a discussion-based format. There was consensus amongst the groups and six common themes emerged Phase 3: Action—developing the model Based on the framework developed in phase 2, the inquirers developed a more elaborate description of approaches Phase 4: Reflection—the final cut Inquiry groups collectively agreed on the COINED-model |
Involving persons living with dementia as co-researchers throughout the research process | Co-research | Preparation, execution, and translation | Governance and conduct | n/a | The Co-researcher Involvement and Engagement in Dementia model, COINED-model (for the complete model see [23]) 1. Providing and developing research training and support for persons living with dementia (PLWD) and academic researchers is fundamental to successful involvement 2. Ensure ongoing consultation through the representation of PLWD in steering and advisory committees throughout the research and provide peer support 3. Involve PLWD in designing and piloting research materials 4. Involve PLWD in collecting data, such as co-conducting interviews and focus groups 5. Findings should be meaningful and translatable to practice and PLWD 6. Share research findings through creative methods to extend the discourse on dementia 7. Involve PLWD in translating research findings to practice 8. Evaluate the (self-defined) effectiveness of the involvement of PLWD as co-researchers 9. Involve PLWD in future work through identifying research priorities | |
Tanner, 2012 [34] | Co-researchers and interview participants establishing shared understandings and common points of reference through their shared experiences in co-conducting interviews | Co-research in interviews | Execution | Governance and conduct | 3 training sessions, 8 interviews | Involvement method: co-research interviews 1. Three preparation sessions were organized to introduce the co-researchers to the study, discuss the content and structure of the interviews, and to practice interview skills. Co-researchers shared personal experiences, key points were written on a flipchart (the use of visual prompts is encouraged) and a framework for the interviews was developed. The interview framework was printed on laminated coloured cards for the co-researchers to use during the interviews 2. The role of the academic researcher during the interviews was to explain the research to participants, obtain informed consent and operate the audio recorder. The co-researchers conducted the interview with some help from the academic researcher. The academic researcher met with co-researchers in their homes to remind them about the purpose and process of the interviews and travelled together by car to the interview participants 3. Immediately after the interview, the academic and co-researcher shared thoughts on the process and content of the interview 4. After each round of interviews a meeting was organized in which academic and co-researchers discussed key themes and issues |