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

ABSTRACT: INTRODUCTION:Identifying research gaps can inform the design and conduct of health research, practice and policies by informing the current body of evidence. Audiences including researchers, clinical guideline developers, clinicians, policymakers, research regulatory bodies, funders and patients/the public can also benefit from understanding the status of research and research gaps to make informed choices. This study aims to explore how key informants define research gaps and characterise methods/practices used to identify and display gaps in health research to inform future research practice and policies. METHODS AND ANALYSIS:This is an exploratory qualitative study using semi-structured in-depth interviews. The participants will be recruited by purposive sampling from initiatives and organisations previously identified in a scoping review on methods to identify, prioritise and display gaps in health research. We anticipate performing up to 28 interviews with the different key informant groups who are involved in using evidence to inform health policy, practice and research. Interviews will be thematically analysed as outlined by Braun and Clarke. The qualitative data-analysis software NVivo V.12 Pro will be used to aid data management and analysis. DISCUSSION:This is the protocol for a follow-up study that aims to complement and enrich the findings of the scoping review on methods to identify, prioritise and display gaps in health research. The overall project aims to develop methodological guidance for describing, identifying and displaying gaps in health research. ETHICS AND DISSEMINATION:The research obtained ethical approval from the University of Liverpool, UK. The findings will be disseminated via conferences, meetings (organised by the Methods in Research on Research project), peer-reviewed publications and lay magazines because the study participants will include the public/patients.

SUBMITTER: Nyanchoka L

PROVIDER: S-EPMC6731867 | biostudies-other | 2019 Sep

REPOSITORIES: biostudies-other

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

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

BMJ open 20190903 8

<h4>Introduction</h4>Identifying research gaps can inform the design and conduct of health research, practice and policies by informing the current body of evidence. Audiences including researchers, clinical guideline developers, clinicians, policymakers, research regulatory bodies, funders and patients/the public can also benefit from understanding the status of research and research gaps to make informed choices. This study aims to explore how key informants define research gaps and characteri ...[more]

PMID: 31481368

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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:BackgroundPatients and the public have an integral role in educating healthcare professionals. Authentic partnerships between higher education institutions and patients and the public are essential. This study examined key stakeholders' views, experiences and expectations of patient and public involvement (PPI) including the nature of the involvement and requirements for partnership.MethodsPurposive and snowball sampling was used to recruit key stakeholders, including patients and members of the public involved in health professions education, and academics interested in PPI. Focus groups were held with patient and public participants, providing the opportunity to gain multiple perspectives in an interactive group setting. Academics with an interest in PPI were interviewed using a semi-structured approach. Topic guides were derived from the literature and piloted prior to data collection. Focus groups and interviews were conducted until data saturation was achieved. All data was audio-recorded, transcribed, anonymised and thematically analysed.ResultsFour focus groups were conducted involving 23 patient and public participants (median number of participants per focus group of 6). Nine interviews were conducted with academics (face-to-face [n = 8] or by telephone [n = 1]). Five themes were developed: previous experiences of PPI, training requirements, challenges/barriers to PPI, facilitators of PPI and future ideas for PPI. All participants held positive views of the value of PPI. Participants had mixed views in terms of training, which depended on the level of involvement, but similar views on the challenges and facilitators for PPI in education. There was agreement that PPI requires institutional vision and investment to build strong relationships and a culture of PPI best practice.ConclusionsThere is a need for more strategic and formal involvement of patients and the public to ensure that that PPI becomes sustainably embedded in health professions education.

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

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

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