Co-research with older people: a systematic literature review

James, Hayley; Buffel, Tine

doi:10.1017/s0144686x21002014

Cited by 37 publications

(34 citation statements)

References 52 publications

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“…3 Co-research has been used as an umbrella term to encompass a family of approaches, such as 'participatory', 'emancipatory' and 'inclusive' research, which reflect a turn towards involving communities in the process of knowledge production. 9 Co-research aims to put principles of empowerment into practice, by offering participants greater control over the research process while providing opportunities to learn and reflect upon their experience. 10 Co-production builds on this, focusing on the delivery of more responsive, personalized public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours.…”

Section: The Tricky Problem Of Defining Co-productionmentioning

confidence: 99%

“…Co‐production and co‐design are conceptualized in a wide range of ways, and the elasticity of the term has been referred to as both its strength and its limitation 3 . Co‐research has been used as an umbrella term to encompass a family of approaches, such as ‘participatory’, ‘emancipatory’ and ‘inclusive’ research, which reflect a turn towards involving communities in the process of knowledge production 9 . Co‐research aims to put principles of empowerment into practice, by offering participants greater control over the research process while providing opportunities to learn and reflect upon their experience 10 .…”

Section: Introductionmentioning

confidence: 99%

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Nothing about us without us: A co‐production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities

Albert

Islam

Haklay

et al. 2023

Health Expectations

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Introduction: Co-production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co-production and how to operationalize it. The current paper describes the development of a co-production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods:The strategy used Appreciative Inquiry (AI), an approach following a fivestep iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in-depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co-production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy.Results: Nine principles for how to do co-production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long-term; co-production activities should be adequately resourced.These principles were based on three underlying values of equality, reciprocity and agency. Conclusion:The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co-production. This documentation of one approach to operationalizing co-production serves to avert any misappropriations of the term 'co-production' by listening to service users,

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Section: The Tricky Problem Of Defining Co-productionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Nothing about us without us: A co‐production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities

Albert

Islam

Haklay

et al. 2023

Health Expectations

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“…Ces dernières années, différents projets en partenariat avec les personnes aînées ont vu le jour et ont permis de dresser les bases de la recherche co-constructive avec cette population (Bindels, Baur, Cox, Heijing et Abma, 2014;Horner, 2016;Littlechild, Tanner et Hall, 2015;Merlett et Etmes, 2010). De plus, une récente revue systématique de la littérature effectuée par James and Buffel (2022) a permis d'analyser 27 articles sur la recherche co-constructive avec les personnes aînées. Au travers de cette revue de la littérature scientifique, il est possible d'identifier de nombreux avantages à ce type de recherche, notamment :…”

Section: Gérontologues Et Personnes Aînées Au Centre D'une Recherche ...unclassified

La mise en abyme d’un projet intergénérationnel de recherche: Un comité intergénérationnel comme processus et sujet de recherche

Paris,

Audet,

Brochu

et al. 2023

Can. J. Aging

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Résumé Les projets de nature intergénérationnelle sont aujourd’hui hautement valorisés par les décideurs publics et les responsables académiques. La pandémie de COVID-19 a fait ressurgir l’importance des relations entre les générations et des projets intergénérationnels ancrés dans la communauté. Cet article présente les résultats d’une étude visant à faire travailler ensemble des personnes aînées et des jeunes adultes au sein d’un projet intergénérationnel ancré dans la communauté. La particularité dans cette étude c’est qu’elle utilise une démarche méthodologique co-constructive, c’est-à-dire qu’elle jumelle des chercheurs et des chercheures académiques de différents horizons et des personnes aînées citoyennes tout au long du processus de recherche. Les résultats portent particulièrement sur les attentes des personnes participantes au projet intergénérationnel, la description du déroulement du projet (sur une période de dix mois) et les perceptions des relations intergénérationnelles au cours du projet. Nous terminons l’article par une discussion autour des constats centraux de notre étude et de notre expérience dans le cadre d’une recherche co-constructive.

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“…Co-research is defined as collaborative research ‘with’ the population of interest, as opposed to conducting research ‘on’ or ‘about’ them [ 1 ]. As a blanket-term, co-research encompasses inclusive research methodologies that involve populations throughout the entire process of research conceptualisation and delivery [ 2 ]. Co-research advocates for equal value to be placed on the voices and perspectives of individuals with lived experience, by recognising the unique value of an individual’s lived experience [ 3 , 4 ].…”

Section: Introductionmentioning

confidence: 99%

Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis

et al. 2023

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Background Co-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palliative and end of life care (PEoLC) has been highlighted, yet few recommendations exist regarding best practice for involving inclusion health groups (i.e., groups that are socially excluded, typically experiencing multiple disadvantages that contribute to poor health outcomes). Aims To identify and synthesise qualitative literature outlining barriers and facilitators for involving four inclusion health groups (individuals with lived experience of: homelessness, substance use disorder, incarceration or exchanging sex for money) in PEoLC research, from the perspectives of both the researchers and individuals with lived experience. Methods This report is a rapid review with thematic synthesis methodology. Three electronic databases were searched (2012–30th August 2022). Thematic synthesis was used to generate themes across qualitative studies. Results Three qualitative studies were eligible for inclusion. Two involved individuals with lived experience of incarceration, and one lived experience of homelessness. No papers outlined best-practice guidance for co-research; all offered reflections on the co-research process. Challenges for involvement included: facilitating appropriate reimbursement; overcoming stigma; fear of tokenism; pre-conceived views and the emotional burden of research. Successes and benefits included: advanced level of insight, a two-way learning opportunity and relatability of lived experience co-researchers. Conclusions This review did not identify any best-practice guidance for co-production of PEoLC research with inclusion health groups. There are few, good quality, qualitative studies offering insight into challenges and facilitators for lived experience co-researcher involvement. Further research and formal policy development is required to produce formal best-practice guidance to support safe, impactful inclusion in PEoLC research. Plain English Summary It is important that researchers work together with people who have lived experience of the topic they are researching. Palliative care is specialised medical care for people living with a terminal illness. There is some collaboration between researchers and people with lived experience in palliative and end-of-life care research. However, some groups of people have been excluded. This includes people experiencing homelessness, or people with drug or alcohol addictions. This review aimed to understand what works and what doesn’t work when involving four excluded groups in palliative and end-of-life research. These groups were people experiencing homelessness, those who had spent time in prison, people with drug or alcohol disorders, and people who exchanged sex for money. This review used a shortened methodology, which allowed it to be done quickly. Three online academic databases (Medline, PubMed, PsychINFO) were searched for research projects: three papers were included in the review. No clear guidance for working with these groups was found. Analysis identified themes across papers. Challenges for collaboration included: appropriate payment methods; overcoming stigma; fear of being talked down to,; assumptions made before meeting people, and the potential of becoming upset. Successes and benefits included: better understanding of the research topic, the opportunity to learn from one another, and how research participants could relate to lived experience co-researchers. There are few, good quality papers, but more research is needed to produce guidance to support safe, impactful collaboration.

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Co-research with older people: a systematic literature review

Cited by 37 publications

References 52 publications

Nothing about us without us: A co‐production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities

Nothing about us without us: A co‐production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities

La mise en abyme d’un projet intergénérationnel de recherche: Un comité intergénérationnel comme processus et sujet de recherche

Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis

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