Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search

Goedhart, Nicole S.; Pittens, Carina A. C. M.; Tončinić, Sara; Zuiderent‐Jerak, Teun; Dedding, Christine; Broerse, Jacqueline E. W.

doi:10.1186/s40900-021-00306-w

Cited by 12 publications

(9 citation statements)

References 85 publications

(373 reference statements)

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“…The notion that public contributors become too professional has been reported previously, but this view is not shared by the individuals who become involved in research 61–63 . Researchers and user‐researchers report that experience differs from professionalism; the role requires skills that develop with practice and can be passed between contributors 64–66 . That this interpretation persists may suggest that trust continues to be shaky among the research community and that individuals remain uncertain about the process and robustness of involvement.…”

Section: Discussionmentioning

confidence: 99%

“… 61 , 62 , 63 Researchers and user‐researchers report that experience differs from professionalism; the role requires skills that develop with practice and can be passed between contributors. 64 , 65 , 66 That this interpretation persists may suggest that trust continues to be shaky among the research community and that individuals remain uncertain about the process and robustness of involvement. It may also reflect the practical challenges of delivering work to deadlines and with competing priorities, so that the requirement to involve public members and respond to their views becomes too demanding.…”

Section: Discussionmentioning

confidence: 99%

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Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

Evans

Carson‐Stevens

Cooper

et al. 2022

Health Expectations

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Background Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

Evans

Carson‐Stevens

Cooper

et al. 2022

Health Expectations

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“…Clinicians discussed them until unanimous agreement and grouped them into 3 groups of clinically relevant conditions suspected to be associated with Daesh exposure. Following community-engaged research principles, 45,46 we presented plain language summaries to 2 Yazidi community leaders (A.K.K. and S.M., one of whom resettled in Canada and one of whom resettled in an IDP camp in Iraq) to verify the relevance of these clinical groupings to their communities and finalize their description and interpretation.…”

Section: Clinician Consensus-building Proceduresmentioning

confidence: 99%

Sociodemographic Characteristics and Mental and Physical Health Diagnoses of Yazidi Refugees Who Survived the Daesh Genocide and Resettled in Canada

Hassan,

Coakley,

Al Masri

et al. 2023

JAMA Netw Open

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ImportanceThe health status of Yazidi refugees, a group of ethnoreligious minority individuals from northern Iraq who resettled in Canada between 2017 and 2018 after experiencing genocide, displacement, and enslavement by the Islamic State (Daesh), is unknown but important to guide health care and future resettlement planning for Yazidi refugees and other genocide victims. In addition, resettled Yazidi refugees requested documentation of the health impacts of the Daesh genocide.ObjectiveTo characterize sociodemographic characteristics, mental and physical health conditions, and family separations among Yazidi refugees who resettled in Canada.Design, Setting, and ParticipantsThis retrospective clinician- and community-engaged cross-sectional study included 242 Yazidi refugees seen at a Canadian refugee clinic between February 24, 2017, and August 24, 2018. Sociodemographic and clinical diagnoses were extracted through review of electronic medical records. Two reviewers independently categorized patients’ diagnoses by International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes and ICD-10-CM chapter groups. Diagnosis frequencies were calculated and stratified by age group and sex. Five expert refugee clinicians used a modified Delphi approach to identify diagnoses likely to be associated with Daesh exposure, then corroborated these findings with Yazidi leader coinvestigators. A total of 12 patients without identified diagnoses during the study period were excluded from the analysis of health conditions. Data were analyzed from September 1, 2019, to November 30, 2022.Main Outcomes and MeasuresSociodemographic characteristics; exposure to Daesh captivity, torture, or violence (hereinafter, Daesh exposure); mental and physical health diagnoses; and family separations.ResultsAmong 242 Yazidi refugees, the median (IQR) age was 19.5 (10.0-30.0) years, and 141 (58.3%) were female. A total of 124 refugees (51.2%) had direct Daesh exposure, and 60 of 63 families (95.2%) experienced family separations after resettlement. Among 230 refugees included in the health conditions analysis, the most common clinical diagnoses were abdominal and pelvic pain (47 patients [20.4%]), iron deficiency (43 patients [18.7%]), anemia (36 patients [15.7%]), and posttraumatic stress disorder (33 patients [14.3%]). Frequently identified ICD-10-CM chapters were symptoms and signs (113 patients [49.1%]), nutritional diseases (86 patients [37.4%]), mental and behavioral disorders (77 patients [33.5%]), and infectious and parasitic diseases (72 patients [31.3%]). Clinicians identified mental health conditions (74 patients [32.2%]), suspected somatoform disorders (111 patients [48.3%]), and sexual and physical violence (26 patients [11.3%]) as likely to be associated with Daesh exposure.Conclusions and RelevanceIn this cross-sectional study, Yazidi refugees who resettled in Canada after surviving the Daesh genocide experienced substantial trauma, complex mental and physical health conditions, and nearly universal family separations. These findings highlight the need for comprehensive health care, community engagement, and family reunification and may inform care for other refugees and genocide victims.

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“…In this sense, those vulnerable consumers that live with disability who are often marginalized and excluded need to be included. Although consumer involvement in research is increasing in popularity, consumers in potentially vulnerable circumstances are seldom included, limiting their influence on research and policy making that affects them (Goedhart et al, 2021). Involvement of these consumers can potentially prevent growing inequalities.…”

Section: Introductionmentioning

confidence: 99%

Consumer partnerships in research (CPR) checklist: A method for conducting market research with vulnerable consumers

Carlini

Robertson

2022

International Journal of Market Research

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There is a need for better evidence on how to effectively support consumer partnerships in research (CPR). This paper aims to provide a practical checklist for market researchers to plan, implement, and report research where vulnerable consumers are the target population. A vulnerable consumer is someone who, due to their circumstances, may be disadvantaged or at risk in some marketplace situations. Here, it is proposed that research conducted about vulnerable consumers must include consumer co-researchers as partners in the research process. The involvement of consumers as co-researchers addresses this methodological gap to some extent by democratizing research design and empowering vulnerable consumers. The CPR Checklist is based on an integrative realistic review method, content validation via an expert panel, and includes consumer co-researcher involvement in the research process. Considering the complexities of vulnerable consumers and market research, the CPR Checklist provides a suite of 'how and why' questions to guide rigorous and ethical project conduct.

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Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search

Cited by 12 publications

References 85 publications

Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

Sociodemographic Characteristics and Mental and Physical Health Diagnoses of Yazidi Refugees Who Survived the Daesh Genocide and Resettled in Canada

Consumer partnerships in research (CPR) checklist: A method for conducting market research with vulnerable consumers

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