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 20 publications

(24 citation statements)

References 85 publications

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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%

See 1 more Smart Citation

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

View full text Add to dashboard Cite

show abstract

“…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. The 2 Yazidi leaders contextualized variables (eg, family separation), validated definitions (eg, Daesh exposure), and interpreted results …”

Section: Methodsmentioning

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 these settings, academics are still the initiators who determine the research agenda and control the research. Furthermore, patients living in vulnerable situations, that is, the 'seldom heard' [17], are rarely engaged [18].…”

Section: Introductionmentioning

confidence: 99%

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

Groot

Haveman²,

Buree³

et al. 2022

IJERPH

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Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions (n = 404 patients), and dialogue sessions (n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.

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

Cited by 20 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

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

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