scholarly journals Involving Persons with Dementia in Social Research: A Literature Review

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 643-643
Author(s):  
Pamela Manley ◽  
Candace Kemp
Keyword(s):  
Literature Review ◽  
Public Involvement ◽  
Social Research ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Emotional Expressions ◽  
Participatory Action ◽  
Research Participants ◽  
Centered Care ◽  
Dementia Research

Abstract Studies involving persons with dementia as research participants have increased over the years, due in part to an emphasis on patient and public involvement in health care and participatory action research. Recent studies indicate a growing trend toward engaging persons with dementia, not only as participants, but also as co-researchers. Further, studies involving persons with dementia as co-researchers and advisers have garnered increased attention due to the inclusion of this population’s unique perspectives and lived experiences. Theoretically, frameworks such as person-centered- and relationship-centered care, also influence and shape the research process. This literature review examines empirical research conducted over the past decade that reports the involvement of persons with dementia as research participants (“research on”) and co-researchers and advisers (“research with”). Among the 27 articles identified, 12 reported “research on,” and 15 reported “research with” persons with dementia. “Research on” targeted participants’ emotional expressions/responses, engagement in exercise/activities; social environment influences, and cognitive training; whereas “research with,” which was mostly qualitative, focused on co-researchers’ perspectives of and experiences with the research process; needs, priorities, and recommendations in research planning; partnering with persons with dementia on the design and development of research instruments, and the importance of critically evaluating the research process. Findings documenting research challenges, complexities, and ethical concerns are also discussed. Overall, findings demonstrate the feasibility of involving persons with dementia in a meaningful way and further affirms that including them as co-researchers is not only beneficial, but has the potential to enhance the entire research process.

scholarly journals Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Nicola Small ◽  
Bie Nio Ong ◽  
Annmarie Lewis ◽  
Dawn Allen ◽  
Nigel Bagshaw ◽  
...  
Keyword(s):  
Patient Experience ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Participants ◽  
Research Activities ◽  
Process Outcomes ◽  
Specialist Services ◽  
Joint Decisions ◽  
Privacy And Confidentiality

Abstract Background The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data. Methods Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data. Results PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study. Conclusions Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).

scholarly journals Patient and Public Involvement for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia

2021 ◽  
Vol 12 ◽  
Author(s):  
Jahanara Miah ◽  
Saima Sheikh ◽  
Rachel C. Francis ◽  
Gayathri Nagarajan ◽  
Sojan Antony ◽  
...  
Keyword(s):  
South Asia ◽  
Study Protocol ◽  
Public Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Middle Income ◽  
Middle Income Countries ◽  
Dementia Research

Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different “rings” of the Wellcome Trust's “Public Engagement Onion” model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research.Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production.Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

scholarly journals Patient and Public Involvement in Identifying Dementia Research Priorities

2018 ◽  
Vol 66 (8) ◽  
pp. 1608-1612 ◽  
Author(s):  
Jennifer Bethell ◽  
Dorothy Pringle ◽  
Larry W. Chambers ◽  
Carole Cohen ◽  
Elana Commisso ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Dementia Research

Problems Associated with Transnational Sociological Research Collaboration in Cambodia

2001 ◽  
Vol 29 (3) ◽  
pp. 521-549 ◽  
Author(s):  
Keyword(s):  
Rural Women ◽  
Research Collaboration ◽  
Social Research ◽  
Academic Culture ◽  
Research Process ◽  
Sociological Research ◽  
Participatory Action ◽  
Sociological Study ◽  
Action Research Project ◽  
Factors Affecting

AbstractIn this paper the focus will be the following applied social research projects I have been involved with - (1) role of rural women in the rehabilitation of local irrigation systems; (2) a study of contextual factors affecting risk-related sexual behaviour among young people between the ages of 15 and 25; (3) participatory action research project looking at problems of natural resource management; (4) sociological study of an urban wastewater project in a provincial town still affected by forms of low level insurgency - to illustrate the problems associated not simply with the research process but with the nature of collaborative research itself. However, an underlying purpose of this paper is not to argue against international collaboration on a range of research-based problems, but how we can better communicate the nature of our research and enhance its credibility. Living and working in a society like Cambodia that has yet to develop a critical academic culture of interest, relevance and utility to the international scholarly community, particularly in the field of sociology, is an issue that will be confronted in this paper.

Who gives “Voice” or “Empowers Migrants” in Participatory Action Research? Challenges and Solutions

2020 ◽  
Vol 17 (2) ◽  
pp. 211-218
Author(s):  
Martha Adelia Montero-Sieburth
Keyword(s):  
Action Research ◽  
Literature Review ◽  
Participatory Action Research ◽  
Research Process ◽  
Cultural Humility ◽  
Power Dynamics ◽  
Power Relationships ◽  
Participatory Action ◽  
Research Challenges ◽  
Migration Research

Given the power relationships between researchers and participants in Participatory Action Research (PAR), this chapter challenges the assumption that migration researchers “give voice” or “empower” participants, and advances the idea that such researchers need to uncover their own voice in the research process through dialogue, interaction and reflection with their partners. In the literature review on PAR, the concept of “giving voice” is quite prevalent yet based on the author’s own qualitative/migration research, she would argue that the actual voice of participants themselves is seldom emphasized or revealed in qualitative/migration research. Paulo Freire’s concepts of dialogue, conscientization, and action for change underscored by his interpretation of voice, which recognizes that marginalized people’s voices emerge out of the conditioned silence created by differential power dynamics, is critically needed as grounding for PAR researchers. In critiquing the use of voice, the conclusion makes a plea for PAR researchers to engage in finding their own voice by embracing the notion of cultural humility.

scholarly journals Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science

2020 ◽  
Vol 17 (21) ◽  
pp. 8048
Author(s):  
Miguel García-Martín ◽  
Carmen Amezcua-Prieto ◽  
Bassel H Al Wattar ◽  
Jan Stener Jørgensen ◽  
Aurora Bueno-Cavanillas ◽  
...  
Keyword(s):  
Reproductive Health ◽  
Health Research ◽  
Sexual And Reproductive Health ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Subjects ◽  
Societal Benefits ◽  
Participation Of Women ◽  
Quality Tools

Evidence-based sexual and reproductive health is a global endeavor without borders. Inter-sectorial collaboration is essential for identifying and addressing gaps in evidence. Health research funders and regulators are promoting patient and public involvement in research, but there is a lack of quality tools for involving patients. Partnerships with patients are necessary to produce and promote robust, relevant and timely research. Without the active participation of women as stakeholders, not just as research subjects, the societal benefits of research cannot be realized. Creating and developing platforms and opportunities for public involvement in sexual and reproductive health research should be a key international objective. Cooperation between healthcare professionals, academic institutions and the community is essential to promote quality research and significant developments in women’s health. This cooperation will be improved when involvement of citizens in the research process becomes standard.

scholarly journals Voicing researched activists with responsive action research

2017 ◽  
Vol 12 (4) ◽  
pp. 315-334 ◽  
Author(s):  
Orestis Varkarolis ◽  
Daniel King
Keyword(s):  
Social Movements ◽  
Action Research ◽  
Social Movement ◽  
Research Process ◽  
Point Of View ◽  
Social Movement Organizations ◽  
Participatory Action ◽  
Content Type ◽  
Research Participants ◽  
New Social Movement

Purpose What it is like to experience being the subject of the research process when you are an actor within a new social movement organization? And what lessons can be learned for researchers engaging with members of New Social Movements? Debates on engagement and the relationship between the researcher and the researched so far have taken the perspective solely of the researcher. Based on insights gained by full participation in a horizontal worker cooperative, the purpose of this paper is to contribute to the facilitation of more fruitful, mutually engaging research relations between organizational theory scholars and members of New Social Movement organizations by voicing the researched in this debate. Design/methodology/approach After providing some accounts from the researched point of view, the paper focuses on crafting an appropriate research process based on participatory action research (PAR) ethos and experience. Findings Since the research findings suggest that PAR combines elements that both trouble and inspire research participants, namely, workload/availability and relevancy/contribution in practice, the authors introduce and provide a case study of responsive action research that emphasizes adaptation and responsiveness in the research process instead of shared governance. Originality/value The originality of this paper lies in voicing the research participants with the aim to aid both scholars and social movements adopt appropriate research designs for the mutual benefit of both theory/action and researchers/researched (even when researchers are already active in the field).

Patient and Public Involvement in Clinical Practice Guidelines

2011 ◽  
Vol 31 (6) ◽  
pp. E45-E74 ◽  
Author(s):  
France Légaré ◽  
Antoine Boivin ◽  
Trudy van der Weijden ◽  
Christine Pakenham ◽  
Jako Burgers ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Literature Review ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Public Involvement ◽  
The United States ◽  
Patient And Public Involvement ◽  
Bibliographic Databases ◽  
The Public ◽  
The Impact

Background. The role of patient and public involvement programs (PPIPs) in developing and implementing clinical practice guidelines (CPGs) has generated great interest. Purpose. The authors sought to identify key components of PPIPs used in developing and implementing CPGs. Data sources. The authors searched bibliographic databases and contacted relevant organizations. Study selection. In total, 2161 articles and reports were retrieved on PPIPs in the development and implementation of CPGs. Of these, 71 qualified for inclusion in the review. Data extraction. Reviewers independently extracted data on key components of PPIPs and barriers and facilitators to their operation. Data synthesis. Over half of the studies were published after 2002, and more than half originated from the United States, the United Kingdom, Australia, and Germany. CPGs that involved patients and the public addressed a variety of health problems, especially mental health and cancer. The most frequently cited objective for using PPIPs in developing CPGs was to incorporate patients’ values or perspectives in CPG recommendations. Patients and their families and caregivers were the parties most often involved. Methods used to recruit PPIP participants included soliciting through patient/public organizations, sending invitations, and receiving referrals and recruits from clinicians. Patients and the public most often participated by taking part in a CPG working group, workshop, meeting, seminar, literature review, or consultation such as a focus group, individual interview, or survey. Patients and the public principally helped formulate recommendations and revise drafts. Limitations. The authors did not contact the authors of the studies. Conclusion. This literature review provides an extensive knowledge base for making PPIPs more effective when developing and implementing CPGs. More research is needed to assess the impact of PPIPs and resources they require.

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