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

ABSTRACT: Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse concerns and corresponding strategies, tools, and methods that could support the inclusion of these citizens in health research. The 40 studies that are included were thematically analysed using the socioecological model. Concerns originate most often on the intrapersonal level of the socioecological model, but concerns were also identified at institutional, community, and policy levels. It is thought-provoking that there is a lack of attention for the research and policy structure in which engagement practices are designed, implemented and evaluated. More research is needed to explore how these cultures could be changed in a way that promotes rather than restrains the engagement of citizens living in vulnerable circumstances in research and policymaking.

SUBMITTER: Goedhart NS

PROVIDER: S-EPMC8414765 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature

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

Goedhart N S NS Pittens C A C M CACM Tončinić S S Zuiderent-Jerak T T Dedding C C Broerse J E W JEW

Research involvement and engagement 20210903 1

Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse concerns and corresponding strategies, tools, and methods that could support the inclusion of these citizens in health research. The 40 studies that are included were thematically analysed using the socioecological model. Concerns originate most often on the intrapersonal level of the socio ...[more]

PMID: 34479622

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Project description:The often poor oral health status of socioeconomically vulnerable adults is widely recognised. Nevertheless, research on it is scarce. To address this gap, this exploratory pilot study aimed to report on the prevalence of untreated caries and its clinical odontogenic consequences, as well as the associated Oral Health Related Quality of Life (OHRQoL) in a marginalised adult Dutch population. The Dutch department of Médecins du Monde (Doctors of the World) included socioeconomically vulnerable (low socioeconomic position [SEP]) adults in the Netherlands through community organisations. The validated Deprivation in Primary Care Questionnaire (DiPCare-Q) was translated in Dutch and used to characterise the SEP of the population. To document untreated caries and severe odontogenic consequences, the DMFT (Decayed, Missing, Filled Permanent Teeth) and PUFA (Pulpal, Fistula, Ulceration, Abscess) index were used. The validated Dutch Oral Health Impact Profile questionnaire (OHIP-14) was used to document the impact of these issues on OHRQoL. Data analysis was conducted in SPSS® (Statistical Package for the Social Sciences) statistics (Kruskal-Wallis, Mann-Whitney-U-test) and STATA software. Data from 59 adult participants were analysed. The prevalence of untreated caries (DT ≥ 1) was 65.5%, 57.9% of which experienced severe odontogenic consequences (DT+PUFA). The prevalence of severe odontogenic consequences (PUFA ≥ 1) was 45.5%. The mean OHIP-14 score of 17.7 ± 13.4 (25th-75th percentile: 6-26) illustrated that untreated caries may have impact on OHRQoL. Individuals who experienced any severe odontogenic consequences from untreated caries reported significantly higher OHIP-14 scores (mean ± s.d.: 21.8 ± 14.8 vs.11.1 ± 7.2). The untreated caries and severe odontogenic consequences seen in a large number of the socioeconomically vulnerable adult participants seemed to have an impact on OHRQoL. These findings emphasise the urgency of including these adults in the professional oral health system for treatment and prevention, and may emphasise the necessity of improving the socioeconomic circumstances of this population. Further exploration of the exact barriers and facilitators to oral healthcare access for socioeconomically vulnerable adults is necessary.

Project description:BACKGROUND: Patients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. Rare disease organizations may provide an effective means to facilitate patient engagement in research. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied. OBJECTIVES: To synthesize evidence about engagement of patients and other stakeholders in research on rare diseases, including the role of rare disease organizations in facilitating patient-centered research. METHODS/RESEARCH DESIGN: A systematic review and gray literature search were guided by a technical expert panel composed of patient representatives, clinicians, and researchers. English-language studies that engaged patients or other stakeholders in research on rare diseases or evaluated engagement were included. Studies were assessed on how well key research questions were answered, based on the level of detail describing engagement activities and whether outcomes from engagement were assessed. RESULTS: Thirty-five studies were included, although many reported minimal information on engagement. Patients and other stakeholders were most commonly engaged to identify patient-centered research agendas, to select which study outcomes were important to patients, to provide input on study design, and to identify strategies for increasing enrollment in trials. Rare disease organizations mainly helped provide access to patients and communicated research opportunities and findings. They also helped promote collaborative networks and provided financial support for research infrastructures. Although authors reported benefits of engagement and identified changes to their research processes, no empirical assessments of engagement practices and their effectiveness were found. CONCLUSIONS: Researchers studying rare diseases can obtain patient input regarding which research questions and health outcomes to study; however, the most effective approaches to engagement have not been well defined.

Project description:BackgroundHow best to prioritise COVID-19 vaccination within and between countries has been a public health and an ethical challenge for decision-makers globally. We reviewed epidemiological and economic modelling evidence on population priority groups to minimise COVID-19 mortality, transmission, and morbidity outcomes.MethodsWe searched the National Institute of Health iSearch COVID-19 Portfolio (a database of peer-reviewed and pre-print articles), Econlit, the Centre for Economic Policy Research, and the National Bureau of Economic Research for mathematical modelling studies evaluating the impact of prioritising COVID-19 vaccination to population target groups. The first search was conducted on March 3, 2021, and an updated search on the LMIC literature was conducted from March 3, 2021, to September 24, 2021. We narratively synthesised the main study conclusions on prioritisation and the conditions under which the conclusions changed.ResultsThe initial search identified 1820 studies and 36 studies met the inclusion criteria. The updated search on LMIC literature identified 7 more studies. 43 studies in total were narratively synthesised. 74% of studies described outcomes in high-income countries (single and multi-country). We found that for countries seeking to minimise deaths, prioritising vaccination of senior adults was the optimal strategy and for countries seeking to minimise cases the young were prioritised. There were several exceptions to the main conclusion, notably that reductions in deaths could be increased if groups at high risk of both transmission and death could be further identified. Findings were also sensitive to the level of vaccine coverage.ConclusionThe evidence supports WHO SAGE recommendations on COVID-19 vaccine prioritisation. There is, however, an evidence gap on optimal prioritisation for low- and middle-income countries, studies that included an economic evaluation, and studies that explore prioritisation strategies if the aim is to reduce overall health burden including morbidity.

Project description:IntroductionAlthough bDMARDs are effective in the treatment of RA, they are associated with dose-dependent side effects, patient burden, and high costs. Recently, many studies have investigated the possibility of discontinuing or tapering bDMARDs when patients have reached their treatment goal. The aim of this review is to provide a narrative overview of the existing evidence on bDMARD dose reduction and to provide answers to specific dose-reduction-related questions that are of interest to clinicians.MethodsWe systematically searched for relevant studies in four scientific databases. Furthermore, we screened the references of reviews and relevant studies.ResultsOur searches resulted in 45 original studies of bDMARD dose reduction in RA patients (15 RCTs and 30 observational studies). Current evidence shows that bDMARD dose reduction can be considered in all RA patients who achieve stable (e.g., ≥6 months) low disease activity or remission. The best strategies seem to be disease-activity-guided dose optimization and fixed dose reduction, since direct bDMARD discontinuation (without restarting) results in a high flare rate, worse physical functioning, and more joint damage. When tapering the bDMARD treatment of a patient, disease activity should be monitored closely, and if a flare occurs, the dose should be increased to the lowest effective dose. Current evidence shows that restarting bDMARD treatment is effective and safe. Unfortunately, no clear predictors of successful dose reduction have been identified so far.ConclusionThe current evidence and rising healthcare costs urge that dose reduction should be considered for eligible patients. However, the decision to start dose reduction should be made in shared decision-making. Future research should focus not only on a better understanding of the effects of dose reduction on clinical outcomes but also on the perspectives of patients and physicians as well as the implementation of this new treatment principle.

Project description:PurposeThe relationship between social networks and health and wellbeing is increasingly demonstrated in vulnerable adult populations. This relationship for vulnerable children and young people has not hitherto been systematically reviewed. This narrative synthesis aims to consolidate research to provide a foundational basis for future health-related social network research and interventions for children and young people.MethodsThis mixed methods systematic review synthesises research investigating whole, egocentric social networks of 32 vulnerable child groups with a mean age below 18. There were no setting, language or date restrictions. The quality was assessed using the Mixed Methods Appraisal Tool. Of 6360 search results, 49 were included for narrative synthesis.ResultsThe majority of pertinent research originates from the USA; the most frequently investigated vulnerabilities were minority ethnic status, homelessness and the presence of special educational needs. Research aims and methodologies varied significantly between studies. Key findings included (i) vulnerable (excluding minority ethnic) children and young people have impoverished networks (ii) access to networks is a protective factor against negative outcomes (iii) social ties, primarily immediate family, provide access to personal resources and (iv) network ties are to a degree substitutable.ConclusionsNetworks are associated with wellbeing and vulnerable children and young people commonly have impoverished networks, excluding cases where vulnerability classification relates to minority ethnic status. Network embeddedness is associated with positive outcomes, particularly for homeless children. Family are typically primary providers of support, but ties are substitutable when networks are restricted. Egocentric social network research is currently limited for vulnerable child populations. Further research could inform interventions that harness networks to improve health, wellbeing and functional outcomes for these child groups.

Project description:ObjectivesTo describe: (1) methods used to engage long-term care (LTC) residents living with dementia in research and guideline development; (2) the outcomes of engagement; and (3) barriers and facilitators to engagement.DesignScoping review.Search strategyWe conducted searches in Academic Search Premier (EBSCO), APA PsychInfo (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science and the Cochrane database, and a structured grey literature search in July 2021 and updated in March 2023. We included studies that described or evaluated resident engagement, defined as including residents living with dementia in the process of developing healthcare guidelines or research which could include collaborators or partners in planning, execution or dissemination of the guideline or research. Title, abstracts and full-texts were screened for eligibility by two team members using a pilot-tested process. Data were extracted from included studies independently and in duplicate by two team members using a pre-tested data extraction form. Results were narratively synthesised according to the research question they addressed.ResultsWe identified three studies for inclusion. Residents were engaged at the beginning of the research projects through interviews, focus groups, and consultations. None of the included articles described the outcomes of engagement. Barriers to engagement were predominantly at the resident level, including impaired verbal communication limiting resident's abilities to participate in discussions, while increased time to support engagement was reported as a barrier at the resident and research team levels.ConclusionsWe found a small body of literature describing the engagement of LTC residents in health research and guideline development. Future work should explore alternative methods to engage LTC residents living with dementia, including art-based methods, and the effect of including resident engagement. Guideline developers and researchers should ensure adequate time and human resources are allocated to support engagement.

Dataset Information

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

Publications

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

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