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Key stakeholders' perspectives and experiences with defining, identifying and displaying gaps in health research: a qualitative study.

ABSTRACT: INTRODUCTION:Mapping the current body of evidence including what is missing helps provide a better understanding of what research is available, ongoing and needed and should be prioritised. Identifying research gaps can inform the design and conduct of health research by providing additional context information about the body of evidence in a given topic area. Despite the commonly used term 'research gap' in scientific literature, little is written on how to find a 'research gap' in the first place. Moreover, there is no clear methodological guidance to identify and display gaps. OBJECTIVE:This study aimed to explore how key stakeholders define research gaps and characterise methods/practices used to identify and display gaps in health research to further advance efforts in this area. DESIGN:This was an exploratory qualitative study using semistructured in-depth interviews. The study sample included the following stakeholder groups: researchers, funders, healthcare providers, patients/public and policy-makers. Interview transcripts were subjected to thematic analysis. RESULTS:Among the 20 interviews conducted (20 participants), a variety of research gap definitions were expressed (ie, five main themes, including gaps in information, knowledge/evidence gaps, uncertainties, quality and patient perspective). We identified three main themes for methods used to identify gaps (primary, secondary and both primary and secondary) and finally six main themes for the methods to display gaps (forest plots, diagrams/illustrations, evidence maps, mega maps, 3IE gap maps and info graphics). CONCLUSION:This study provides insights into issues related to defining research gaps and methods used to identify and display gaps in health research from the perspectives of key stakeholders involved in the process. Findings will be used to inform methodological guidance on identifying research gaps.

SUBMITTER: Nyanchoka L

PROVIDER: S-EPMC7656956 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Key stakeholders' perspectives and experiences with defining, identifying and displaying gaps in health research: a qualitative study.

Nyanchoka Linda L Tudur-Smith Catrin C Porcher Raphaël R Hren Darko D

BMJ open 20201110 11

<h4>Introduction</h4>Mapping the current body of evidence including what is missing helps provide a better understanding of what research is available, ongoing and needed and should be prioritised. Identifying research gaps can inform the design and conduct of health research by providing additional context information about the body of evidence in a given topic area. Despite the commonly used term 'research gap' in scientific literature, little is written on how to find a 'research gap' in the ...[more]

PMID: 33172944

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Project description:BackgroundEven though research integrity (RI) training programs have been developed in the last decades, it is argued that current training practices are not always able to increase RI-related awareness within the scientific community. Defining and understanding the capacities and lacunas of existing RI training are becoming extremely important for developing up-to-date educational practices to tackle present-day challenges. Recommendations on how to implement RI education have been primarily made by selected people with specific RI-related expertise. Those recommendations were developed mainly without consulting a broader audience with no specific RI expertise. Moreover, the academic literature lacks qualitative studies on RI training practices. For these reasons, performing in-depth focus groups with non-RI expert stakeholders are of a primary necessity to understand and outline how RI education should be implemented.MethodsIn this qualitative analysis, different focus groups were conducted to examine stakeholders' perspectives on RI training practices. Five stakeholders' groups, namely publishers and peer reviewers, researchers on RI, RI trainers, PhDs and postdoctoral researchers, and research administrators working within academia, have been identified to have a broader overview of state of the art.ResultsA total of 39 participants participated in five focus group sessions. Eight training-related themes were highlighted during the focus group discussions. The training goals, timing and frequency, customisation, format and teaching approach, mentoring, compulsoriness, certification and evaluation, and RI-related responsibilities were discussed. Although confirming what was already proposed by research integrity experts in terms of timing, frequency, duration, and target audience in organising RI education, participants proposed other possible implementations strategies concerning the teaching approach, researchers' obligations, and development an evaluation-certification system.ConclusionsThis research aims to be a starting point for a better understanding of necessary, definitive, and consistent ways of structuring RI education. The research gives an overview of what has to be considered needed in planning RI training sessions regarding objectives, organisation, and teaching approach.

Project description:BackgroundDespite aspects of the SAFE strategy for reducing trachoma in Tanzania have been somewhat successful, the disease still persists in marginalised communities even with repeated trachoma control interventions. This study aims to understand the facilitators and barriers associated with implementing trachoma control programmes in these communities, from the perspective of non-governmental organisations (NGOs).MethodsParticipants were the representatives of NGOs who had knowledge and experience in the implementation of trachoma control programmes. Data was collected using in-depth, semi-structured interviews guided by a topic guide, which was updated after each interview using a constant comparative method. Interviews were audio-recorded and then transcribed verbatim. Thematic analysis was done inductively. Codes were generated from the transcripts and then clustered into themes.FindingsThe context within marginalised communities often acted as a perceived barrier to successful implementation of control programmes. This included poor environmental cleanliness, lack of trust, poor disease knowledge and traditional lifestyles. Community values could either be a facilitator or a barrier, depending on the scenario. The anatomical location of the disease and the poor understanding of the disease progression also served as barriers. Considerations affecting decision-making among NGO's include financial feasibility, community needs and whether the quality of the intervention could be improved. NGOs felt that the collaboration and the opportunity to learn from other organisations were beneficial aspects of having different actors. However, this also resulted in variability in the effectiveness of interventions between districts.ConclusionNGOs should focus on behaviour change and health education that is tailored to marginalised communities and seek innovative ways to implement trachoma intervention programmes whilst being minimally intrusive to the traditional way of life. Partners should also implement ways to ensure high quality programmes are being provided, by increasing staff accountability and compensating volunteers fairly.

Project description:BACKGROUND:Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development. METHODS:A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia', following PRISMA guidelines. Noblit and Hare's approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a 'line-of-argument' was developed. RESULTS:In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 'service providers', 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad's needs and preferences. CONCLUSION:Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward. TRIAL REGISTRATION:PROSPERO Registration Number: CRD42016050191 .

Project description:BACKGROUND:Various population segmentation tools have been developed to inform the design of interventions that improve population health. However, there has been little consensus on the core indicators and purposes of population segmentation. The existing frameworks were further limited by their applicability in different practice settings involving stakeholders at all levels. The aim of this study was to generate a comprehensive set of indicators and purposes of population segmentation based on the experience and perspectives of key stakeholders involved in population health. METHODS:We conducted in-depth semi-structured interviews using purposive sampling with key stakeholders (e.g. government officials, healthcare professionals, social service providers, researchers) involved in population health at three distinct levels (micro, meso, macro) in Singapore. The interviews were audio-recorded and transcribed verbatim. Thematic content analysis was undertaken using NVivo 12. RESULTS:A total of 25 interviews were conducted. Eight core indicators (demographic characteristics, economic characteristics, behavioural characteristics, disease state, functional status, organisation of care, psychosocial factors and service needs of patients) and 21 sub-indicators were identified. Age and financial status were commonly stated as important indicators that could potentially be used for population segmentation across three levels of participants. Six intended purposes for population segmentation included improving health outcomes, planning for resource allocation, optimising healthcare utilisation, enhancing psychosocial and behavioural outcomes, strengthening preventive efforts and driving policy changes. There was consensus that planning for resource allocation and improving health outcomes were considered two of the most important purposes for population segmentation. CONCLUSIONS:Our findings shed light on the need for a more person-centric population segmentation framework that incorporates upstream and holistic indicators to be able to measure population health outcomes and to plan for appropriate resource allocation. Core elements of the framework may apply to other healthcare settings and systems responsible for improving population health. TRIAL REGISTRATION:The study was approved by the SingHealth Institutional Review Board (CIRB Reference number: 2017/2597).

Project description:INTRODUCTION:Unequal access to kidney transplantation is suggested, but no systematic inventory exists about factors influencing access to kidney transplantation. There is an absence of any research that has combined stakeholder perspectives along the complete trajectory of transplantation. The present qualitative study explores the contributing factors from the perspectives of multiple stakeholders in this trajectory, including patients, health professionals and health insurance and financial representatives in the Netherlands. Moreover, stakeholders will be invited to suggesting strategies and solutions for handling the facilitating and hindering factors found. By means of interaction, stakeholder groups will arrive at a consensus for new policymaking in the field of a Dutch transplantation care. METHODS AND ANALYSIS:The different stakeholders' perspectives and possible solutions will be explored by interviewing in three phases. In the first phase, stakeholders' group perspectives will be explored with individual interviews and focus group interviews without confrontation of views from other perspectives. In the second phase of focus group interviewing, perspectives will be confronted with the other stakeholders' perspectives assessed. Finally, in the third phase, stakeholders will be invited to focus group discussions for suggesting solutions to overcome barriers and promote facilitators for improving access to transplantation. Approximately, groups from six to twelve participants per focus group and four to maximal six focus groups will be held per stakeholder, depending on the level of saturation, as prescribed by grounded theory. The interviews will be audio-recorded and transcribed verbatim, and qualitative data will be analysed according to the principles of grounded theory supported by using NVivo software. ETHICS AND DISSEMINATION:The Medical Ethical Committee of Erasmus MC, Rotterdam, The Netherlands, has approved this study. The results will be disseminated in peer-reviewed journals and major international conferences.

Project description:BackgroundThe experiences, physical and mental health and needs of women with breast cancer have been studied in some detail, but there is a lack of discussion of the experiences of stakeholder groups such as men with breast cancer, partners and carers and healthcare professionals. The aim of this study was to explore and understand the experiences and perceptions of male breast cancer stakeholders from diagnosis through to survivorship.MethodsWe conducted a thematic review of qualitative studies included in a large published scoping review on male breast cancer (reported under the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews extension). To be included in a qualitative evidence review, studies had to use qualitative methods for data collection and analysis to capture the perspectives of men with breast cancer, partners or caregivers, and healthcare workers. Key characteristics and findings were extracted and a conceptual coding framework was summarized using thematic analysis.ResultsOut of a total of 310 studies in the research literature (published research articles and gray literature), 15 studies met the inclusion criteria. These studies reported on the experiences of men with breast cancer, partners or caregivers, and healthcare workers, with participant numbers ranging from 2 to 31. A total of 17 descriptive themes (study outcomes) were identified. From these, four high-level analytic themes emerged: (1) Predicament; (2) Emotion; (3) Support; (4) Coping.ConclusionsThe gender stigma that exists at the patient, healthcare system, and family-society levels largely influences the experiences of the male breast cancer stakeholder population. To address gender inequalities in breast cancer care, healthcare organizations and society at large should remain equally attentive to the needs of male and female breast cancer patients. These needs include reducing healthcare and social stigma, providing gender-specific information and emotional support, and access to support groups.

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Key stakeholders' perspectives and experiences with defining, identifying and displaying gaps in health research: a qualitative study.

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Key stakeholders' perspectives and experiences with defining, identifying and displaying gaps in health research: a qualitative study.

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