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      Inequity in clinical research access for service users presenting comorbidity within alcohol treatment settings: findings from a focused ethnographic study

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          Abstract

          Background

          While healthcare policy has fostered implementation strategies to improve inclusion and access of under-served groups to clinical care, systemic and structural elements still disproportionately prevent service users from accessing research opportunities embedded within clinical settings. This contributes to the widening of health inequalities, as the absence of representativeness prevents the applicability and effectiveness of evidence-based interventions in under-served clinical populations. The present study aims to identify the individual (micro), organisational (meso) and structural (macro) barriers to clinical research access in patients with comorbid alcohol use disorder and alcohol-related liver disease.

          Methods

          A focused ethnography approach was employed to explore the challenges experienced by patients in the access to and implementation of research processes within clinical settings. Data were collected through an iterative-inductive approach, using field notes and patient interview transcripts. The framework method was utilised for data analysis, and themes were identified at the micro, meso and macro levels.

          Results

          At the micro-level, alcohol-related barriers included encephalopathy and acute withdrawal symptoms. Alcohol-unrelated barriers also shaped the engagement of service users in research. At the meso-level, staff and resource pressures, as well as familiarity with clinical and research facilities were noted as influencing intervention delivery and study retention. At the wider, macro-level, circumstances including the ‘cost of living crisis’ and national industrial action within healthcare settings had an impact on research processes. The findings emphasise a ‘domino effect’ across all levels, demonstrating an interplay between individual, organisational and structural elements influencing access to clinical research.

          Conclusions

          A combination of individual, organisational and structural barriers, exacerbated by the COVID-19 pandemic, and the socioeconomic landscape in which the study was conducted further contributed to the unequal access of under-served groups to clinical research participation. For patients with comorbid alcohol use disorder and alcohol-related liver disease, limited access to research further contributes towards a gap in effective evidence-based treatment, exacerbating health inequalities in this clinical population.

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          Most cited references78

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          Standards for reporting qualitative research: a synthesis of recommendations.

          Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods.
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            Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups

            Background This study aims to review the literature regarding the barriers to sampling, recruitment, participation, and retention of members of socioeconomically disadvantaged groups in health research and strategies for increasing the amount of health research conducted with socially disadvantaged groups. Methods A systematic review with narrative synthesis was conducted. Searches of electronic databases Medline, PsychInfo, EMBASE, Social Science Index via Web of Knowledge and CINHAL were conducted for English language articles published up to May 2013. Qualitative and quantitative studies as well as literature reviews were included. Articles were included if they reported attempts to increase disadvantaged group participation in research, or the barriers to research with disadvantaged groups. Groups of interest were those described as socially, culturally or financially disadvantaged compared to the majority of society. Eligible articles were categorised according to five phases of research: 1) sampling, 2) recruitment and gaining consent, 3) data collection and measurement, 4) intervention delivery and uptake, and 5) retention and attrition. Results In total, 116 papers from 115 studies met inclusion criteria and 31 previous literature reviews were included. A comprehensive summation of the major barriers to working with various disadvantaged groups is provided, along with proposed strategies for addressing each of the identified types of barriers. Most studies of strategies to address the barriers were of a descriptive nature and only nine studies reported the results of randomised trials. Conclusions To tackle the challenges of research with socially disadvantaged groups, and increase their representation in health and medical research, researchers and research institutions need to acknowledge extended timeframes, plan for higher resourcing costs and operate via community partnerships.
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              Qualitative and mixed methods provide unique contributions to outcomes research.

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                Author and article information

                Contributors
                sofia.hemrage@kcl.ac.uk
                Journal
                Int J Equity Health
                Int J Equity Health
                International Journal for Equity in Health
                BioMed Central (London )
                1475-9276
                22 May 2024
                22 May 2024
                2024
                : 23
                : 103
                Affiliations
                [1 ]Department of Addictions, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, ( https://ror.org/0220mzb33) London, UK
                [2 ]Department of Public Health, Environments and Society, London School of Hygiene and Tropical Medicine, ( https://ror.org/00a0jsq62) London, UK
                [3 ]South London and Maudsley NHS Foundation Trust, ( https://ror.org/015803449) London, UK
                [4 ]Institute of Liver Studies, Cheyne Wing (Third Floor), King’s College Hospital, ( https://ror.org/044nptt90) London, UK
                Article
                2197
                10.1186/s12939-024-02197-1
                11110345
                38778351
                307955fb-cb58-430e-92e9-569184075c18
                © The Author(s) 2024

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 23 January 2024
                : 14 May 2024
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health and Care Research;
                Award ID: NIHR Applied Research Collaboration South London
                Award ID: NIHR Applied Research Collaboration South London
                Award ID: NIHR Specialist Biomedical Research Centre for Mental Health
                Award ID: NIHR Specialist Biomedical Research Centre for Mental Health
                Award ID: NIHR Specialist Biomedical Research Centre for Mental Health
                Award Recipient :
                Categories
                Research
                Custom metadata
                © BioMed Central Ltd., part of Springer Nature 2024

                Health & Social care
                barriers,inequity,access,research,clinical care,service users,comorbidity,alcohol use disorder,alcohol-related liver disease,focused ethnography

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