Key Stakeholder Groups Research Articles

‘Just Another Outing in a Boat’: Findings from the Evaluation of the Mixed Ability Sport Development Programme

Article 30 (5a) of the UNCRPD states that participation in mainstream sport should be a right for all individuals. However, many disabled people still face barriers to participation, and provision remains segregated and/or determined, at least in part, by the nature and degree of impairment. This paper explores the Mixed Ability (MA) model as an innovative approach to facilitating disabled people’s participation in, and engagement with, mainstream sport. It outlines findings from an evaluation of the Sport England-funded Mixed Ability Sport Development Programme, which saw the MA model trialed in a variety of sports. A participatory research design was employed to generate data with key stakeholder groups involved in the design and delivery of programme activities, as well as with MA participants. Analysis of the data identified three core themes: (i) defining MA sport; (ii) the impacts of MA sport; and (iii) challenges and enablers of MA sport. In discussing these, it is argued that the MA model can be a powerful approach to inclusion and help to shape meaningful change. Indeed, the data suggest that the impacts of MA activities can extend beyond the individual level and influence shifts in both sports club culture and wider perceptions around disability. The paper closes by considering the implications of the research and outlines recommendations for future practice in this area.

Community-Led, Cross-Sector Partnership of Housing and Health Care to Promote Aging in Place (Unite Health Project): Protocol for a Prospective Observational Study.

For many older Americans, aging in place is their preferred living arrangement. Minoritized and socioeconomically disadvantaged older adults are up to 3 times more likely to experience disability than other groups, which increases their likelihood of being unable to age in place. Bold ideas to facilitate aging in place, particularly among vulnerable populations, are needed. One such idea is the Unite care model, a community-initiated, academic-supported, cross-sector initiative that combines 2 sectors: housing and health care. The Unite care model colocates a federally qualified health center clinic on an older adult affordable housing campus in Flint, Michigan. There are two aims to this study. Aim 1 is to evaluate the implementation of the Unite care model in terms of acceptability, adoption, and penetration. Aim 2 is to determine which older adults use the care model and whether the care model promotes aging in place through risk factor reduction and improvement in the physical and social environment. We will assess the care model using a concurrent, exploratory mixed methods design. For aim 1, acceptability will be assessed through semistructured interviews with key stakeholder groups; adoption and penetration will be assessed using housing and health care records. For aim 2, residents residing in the Unite clinic building will participate in structured outcome assessments at 6 and 12 months. Risk factor reduction will be measured by change in systolic blood pressure from baseline to 12 months and change in the physical and social environment (item counts) will also be assessed from baseline to 12 months. Data collection for aim 1 began in July 2021 and is anticipated to end in April 2023. Data collection for aim 2 began in June 2021 and concluded in November 2022. Data analysis for aim 1 is anticipated to begin in the summer of 2023 and analysis for aim 2 will begin in the spring of 2023. If successful, the Unite care model could serve as a new care model to promote aging in place among older adults living in poverty and older Black Americans. The results of this proposal will inform whether larger scale testing of this new model of care is warranted. DERR1-10.2196/47855.

Patient, Caregiver, and Clinician Perceptions of Palliative Care that Influence Access and Use: A Qualitative Meta-Synthesis.

Objective: Benefits of integration of palliative care early in the trajectory of a patient's serious illness are well established in the literature. Yet, barriers to palliative care access in the US continue to exist. The purpose of this study is to synthesize existing qualitative data of patient, caregiver, and clinician perceptions of palliative care (PC) that influence PC access and use in the US. Methods: A formal qualitative meta-synthesis was completed. The meta-synthesis included 1) a systematic literature search of qualitative studies conducted from 2016 to 2021, 2) a critical appraisal of the included studies, and 3) a reciprocal translation of the study's findings through an interpretive thematic analysis. Results: Seven articles met inclusion criteria resulting in a sample size of patients (n=18), caregivers (n=15), and clinicians (n=118). Three themes emerged with associated subthemes: knowledge and opinions of PC (subthemes of patient and caregiver knowledge and awareness and clinician knowledge and beliefs); care coordination and collaboration (subthemes of communication and trust); and social and structural drivers (subthemes of socioeconomic demographics and time and resources). Conclusions: This qualitative meta-synthesis identifies barriers and facilitators to palliative care access and use. The study findings illuminate the commonalities and differences of the perceptions of the three key stakeholder groups. In addition, this qualitative meta-synthesis reveals the complexities within the US healthcare system, and the challenges patients and their caregivers face accessing PC.

Strengthening local government policies to address health inequities: perspectives from Australian local government stakeholders

BackgroundWith their close connection to community and increasing preventive health remit, local governments are well positioned to implement policies and programs to address health inequities. Nevertheless, there is a lack of evidence of equity-focused policy action in this sector. We aimed to understand how local government representatives approach equity in the development and implementation of health and wellbeing policies and programs, and to identify potential enablers for strengthening an equity focus.MethodsWe conducted semi-structured interviews (June 2022-January 2023) with 29 health directorate representatives from 21 local governments in Victoria, Australia. Representatives were recruited from urban, regional and rural local government areas, with varying levels of socioeconomic position. Data was analysed inductively using Braun and Clarke’s reflexive thematic analysis, informed by social determinants of health theory and a public policy decision making framework.ResultsLocal governments approach health equity in different ways including focusing on priority populations, disadvantaged geographic areas, or by targeting the upstream determinants of health, such as housing and employment. Enabling factors for more equity-oriented local government policy action included those internal to local governments: (i) having a clear conceptualisation of equity, (ii) fostering a strong equity-centric culture, and (iii) developing organisational-wide competency in health equity. External factors related to key stakeholder groups that support and/or influence local governments included: (iv) strong support from community, (v) state government leadership and legislation, and (vi) supportive local partners, networks and NGO’s.ConclusionsLocal governments have a responsibility to implement policies and programs that improve health and reduce health inequities. Local government’s capacity to leverage resources, structures, processes and relationships, internally and across sectors and community, will be key to strengthening equity-oriented local government health policies and programs.

Governance Discourses and Image Management Strategies in Large-Scale Urban Development Projects—How a Shifting Context and Actor Relations Influence Planning

Governance processes and image management strategies in large-scale urban development projects are exposed to a range of contextual and internal actor-network-related influences. These relations are complex and, due the long realization time of these projects, cannot be entirely anticipated by management strategies. This research investigates how organizations manage these complexities and uncertainties, what strategies they employ, and how these strategies adapt over time. The research analyzes the empirical case of the Amsterdam Zuidas development through a series of interviews conducted with key stakeholder group representatives and an extensive study of the development visions at different milestones of the development. The study relates these findings to the theoretical framework of Henry Mintzberg on strategy formation and finds that large-scale urban development projects need to employ overlapping strategies and engage in adaptive learning to balance development ambitions with the internal and external influences affecting the strategies.

Enhancing the quality of psychological interventions delivered by telephone in mental health services: increasing the likelihood of successful implementation using a theory of change

BackgroundThe implementation of new and complex interventions in mental health settings can be challenging. This paper explores the use of a Theory of Change (ToC) for intervention design and evaluation to increase the likelihood of complex interventions being effective, sustainable, and scalable. Our intervention was developed to enhance the quality of psychological interventions delivered by telephone in primary care mental health services.MethodsA ToC represents how our designed quality improvement intervention targeting changes at service, practitioner, and patient levels was expected to improve engagement in, and the quality of, telephone-delivered psychological therapies. The intervention was evaluated following implementation in a feasibility study within three NHS Talking Therapies services through a qualitative research design incorporating semi-structured interviews and a focus group with key stakeholders (patients, practitioners, and service leads) (N = 15). Data were analysed using the Consolidated Framework for Implementation Research (CFIR) and the ToC was examined and modified accordingly following the findings.ResultsCFIR analysis highlighted a set of challenges encountered during the implementation of our service quality improvement telephone intervention that appeared to have weakened the contribution to the change mechanisms set out by the initial ToC. Findings informed changes to the intervention and refinement of the ToC and are expected to increase the likelihood of successful future implementation in a randomised controlled trial.ConclusionsFour key recommendations that could help to optimise implementation of a complex intervention involving different key stakeholder groups in any setting were identified. These include: 1-developing a good understanding of the intervention and its value among those receiving the intervention; 2-maximising engagement from key stakeholders; 3-ensuring clear planning and communication of implementation goals; and 4-encouraging the use of strategies to monitor implementation progress.

CSR and stakeholder salience in MNE subsidiaries in emerging markets

The purpose of this study is to identify the key stakeholder groups pressuring multinational enterprises (MNEs) in emerging markets (EMs), also if the pressure is global or local, to develop corporate social responsibility (CSR) strategies. Drawing on stakeholder salience and institutional theories, all the stakeholder groups acknowledged and analysed in the literature were identified and examined to understand if they were perceived by MNEs in China as effective in pressuring them to engage in CSR strategies and activities. Results demonstrate that only stakeholder groups with power – government power or voting power – are perceived as having enough pressure to make MNEs’ Chinese subsidiaries engage in CSR, which is contrary to current theories. Our results allow us to theorise on an extension of the concept of utilitarian power and political power when analysing stakeholder salience in EMs. This research has important implications for managers as balancing and working with limited resources and correctly identifying and prioritising key stakeholders are vital to successfully improving performance.

The role of stakeholder involvement in the evolving EU HTA process: Insights generated through the European Access Academy’s multi-stakeholder pre-convention questionnaire

ABSTRACT Involvement of all relevant stakeholders will be of utmost importance for the success of the developing EU HTA harmonization process. A multi-step procedure was applied to develop a survey across stakeholders/collaborators within the EU HTA framework to assess their current level of involvement, determine their suggested future role, identify challenges to contribution, and highlight efficient ways to fulfilling their role. The ‘key’ stakeholder groups identified and covered by this research included: patients‘, clinicians‘, regulatory, and Health Technology Developer representatives. The survey was circulated to a wide expert audience including all relevant stakeholder groups in order to determine self-perception by the ‘key’ stakeholders regarding involvement in the HTA process (self-rating), and in a second, slightly modified version of the questionnaire, to determine the perception of ‘key’ stakeholder involvement by HTA bodies, payers, and policymakers (external rating). Predefined analyses were conducted on the submitted responses. Fifty-four responses were received (patients9; clinicians: 8; regulators: 4; HTDs 14; HTA bodies: 7; Payers: 5; policymakers 3; others 4). The mean self-perceived involvement score was consistently lower for each of the ‘key’ stakeholder groups than the respective external ratings. Based on the qualitative insights generated in the survey, a RACI Chart (Responsible/Accountable/Consulted/Informed) was developed for each of the stakeholder groups to determine their roles and involvement in the current EU HTA process. Our findings suggest extensive effort and a distinct research agenda are required to ensure adequate involvement of the key stakeholder groups in the evolving EU HTA process.

Understanding human-centred artificial intelligence in the banking sector

The advent of smart digital devices and social media has shaped how consumers interact and transact with their financial institutions. Consumers increasingly want hyper-personalised interactions that are more frequent and proactive, while financial institutions have a growing need to cater to consumers’ new demands. Financial institutions, such as banks, continuously adapt to the latest technologies to keep pace with evolving customer behaviours, needs, and experiences. One such emerging technology is artificial intelligence (AI). Many organisations realise the potential of AI; however, a human-centred AI system must be capable of understanding human characteristics and making decisions like humans. This paper presents an empirical study, involving survey participants from three different groups: banks, IT vendors and focus groups. Emphasis is placed on understanding the effect of practising a co-development mindset between these three key stakeholder groups on the outcome of developed human-centred AI-enabled products and services. The survey results show that capturing and processing human emotions (HE) to train an AI model improves customer experience and trustworthiness, and a co-development mindset practised between the IT vendor and the bank will positively influence the effectiveness of human-centred AI-enabled products and services.

Focus Issue Articles on Diagnostic Assay Development and Validation: The Science of Getting It Right

Focus Issue Articles on Diagnostic Assay Development and Validation: The Science of Getting It Right

Design for performability: a proposal for democratic redesign of the classical guitar

Mastery of a musical instrument, including an ability to reach virtuosity in expression and performance, is commonly achieved through a lifelong commitment to practise. The specific instrument played has a crucial role in this journey. This paper reports on design research that aimed to determine the potential for redesigning the classical guitar, whether iteratively or radically, from the perspective of key stakeholder groups: luthiers, composers, and performers. A total of 25 interviews were conducted and analysed to identify shared and unique concerns amongst the stakeholder groups. The findings are used to conceive and develop a new design-related musical term ‘performability’, which builds upon the established term ‘playability’ but has much stronger interactional and experiential dimensions. Furthermore, the paper provides insights into ways in which an industrial designer can contribute to classical guitar design as a fourth stakeholder. Industrial design expertise is proposed to provide a mediating and catalysing role for democratic (i.e. multi-stakeholder, multi-perspective) instrument design or redesign. The paper concludes with a proposal for a ‘design for performability’ framework suited to co-design sessions aiming to achieve a highly performable classical guitar.

Understanding and Improving the Collection and Use of Diagnostic Test Validation Data: Reflections and Next Steps

Although the importance of test validation in a plant health context is widely recognized, it is arguably not yet used to its full potential. This concept note describes the basic concepts underlying test performance and validation, as well as their current interpretation and use by key stakeholder groups. It is argued that, due to a number of communication pitfalls and associated limitations, current approaches are too fragmented and could lead to suboptimal results. Recommendations on how to improve the collection and use of validation data are based on work conducted in the EU VALITEST project (2018 to 2021). A key output of the project is its contribution to the standardization of test performance studies from sample selection and testing to interpreting and communicating test results. In addition, a prototype mathematical framework has been developed, which enables users to more easily consider and communicate trade-offs in test selection and development. The framework provides the basis for a more holistic approach, aiming to streamline collaboration between stakeholder groups. [Formula: see text] Copyright © 2023 The Author(s). This is an open access article distributed under the CC BY-NC-ND 4.0 International license .

Market-oriented succession effectiveness in family business – Case-based evidence from Cyprus family-owned wine business

The incessant effort towards long-term survival and competitiveness is especially strong among family businesses, which, due to their unique characteristics, face particular challenges that jeopardize their business potential and market orientation. The aim of this paper is to identify, explicate and interrelate the critical factors of a strategic and holistic market-oriented succession process within Cypriot family-owned wineries. This empirical study was conducted through the perceptual lens of two key stakeholder groups: incumbents and family owners. And applied two methods, collected in two phases. The first included a survey with 52 family-owned wineries operating across the Republic of Cyprus, and the second encompassed 16 in-depth personal interviews with incumbents and successors from six wineries. The originality and novel theoretical contribution of the paper is twofold: (a) it employs, expounds and interrelates extant theories with solid empirical findings to provide a descriptively comprehensive understanding of the key market-oriented family business succession principles within Cyprus’s family-owned wine industry, and (b) it prescriptively develops the WineSuccess Framework®, which unequivocally intertwines 16 fundamental factors that contribute to the implementation of an effective market-oriented succession process in the same and comparable contexts.

Barriers to environmental impact assessment implementation for construction projects in Nigeria

PurposeEnvironmental impact assessment (EIA) is one of the best approaches to identifying, preventing, minimising, compensating for any unfavourable impacts on the environment and also encouraging sustainability. This paper aims to investigate the barriers to EIA implementation for construction projects in Nigeria.Design/methodology/approachThe study adopted a survey research technique. The snowball sampling approach was adopted to identify key stakeholders in EIA practice for the administration of questionnaire. A total of 187 questionnaires were administered and a response rate of 60% (113 questionnaires were adequately filled and returned) was achieved. Descriptive and inferential statistics were utilised in analysing elicited data.FindingsThe results from data analysis showed that, “failure to influence the decision-making process/multiple conflicting decision-making”, “unstable regulatory regime”, “lack of available, accessible and fit-for purpose data”, “inadequate public knowledge of legal issues” and “poor provision of information” were the top most five barriers to EIA implementation for construction projects in Nigeria. Also, the results from the research show a statistically significant degree of agreement on the rankings by the groups of key stakeholders in EIA concerning the barriers to EIA implementation for construction projects.Originality/valueThis paper contributed to more effective EIA studies by drawing attentions to barriers to EIA implementation for construction projects. An understanding of these barriers can help key stakeholders in the construction industry of developing countries such as Nigeria to facilitate development of methods required in reducing barriers to EIA implementation in the construction sector.

Vaccine Acceptance During a Novel Student-led Emergency Department COVID-19 Vaccination Program.

The coronavirus 2019 (COVID-19) pandemic not only exacerbated barriers to healthcare but has also highlighted the trend toward increased vaccine hesitancy. Our goal was to improve COVID-19 vaccine uptake through a student-led, emergency department-based (ED) vaccination program. This prospective, quality-improvement pilot program used medical and pharmacy student volunteers as COVID-19 vaccine screeners in a southern, urban, academic ED. Patients eligible for vaccination were offered either the Janssen-Johnson & Johnson or the Pfizer-BioNTech COVID-19 vaccine and were educated about vaccine concerns. Vaccine acceptance rates were recorded, as well as reasons for vaccine hesitancy, vaccine brand preferences, and demographics. The primary and secondary quantitative outcomes were overall vaccine acceptance and change in vaccine acceptance after student-provided education, respectively. We performed logistic regression to identify potential variables that correlated with vaccine acceptance. Guided by the Consolidated Framework for Implementation Research, focus group interviews with four key stakeholder groups explored implementation facilitators and barriers. We screened 406 patients for COVID-19 vaccination eligibility and current vaccine status, the majority of whom were unvaccinated. Of unvaccinated or partially vaccinated patients, vaccine acceptance before education was 28.3% (81/286), and vaccine acceptance after education was 31.5% (90/286) (% difference, 3.1% [95% CI 0.3%-5.9%], P=0.03). The most common hesitancy factors cited were concerns about side effects and safety. Results from the regression analysis indicated that increasing age and Black race were associated with an increased odds of vaccine acceptance. Focus groups revealed implementation barriers, including patient resistance and workflow issues, and facilitators, including student involvement and public health promotion. Using medical and pharmacy student volunteers as COVID-19 vaccine screeners was successful, and brief education provided by the students led to a modest increase in vaccine acceptance, with overall acceptance of 31.5%. Numerous educational benefits are described.

An assessment of information needs and workflows for emergency service providers and caregivers of children with medical complexity

BackgroundThe goal of Project Austin, an initiative to improve emergency care for rural children who are medically complex (CMC), is to provide an Emergency Information Form (EIF) to their parents/caregivers, to local Emergency Medical Services, and Emergency Departments. EIFs are standard forms recommended by the American Academy of Pediatrics that provide pre-planned rapid response instructions, including medical conditions, medications, and care recommendations, for emergency providers. Our objective is to describe the workflows and perceived utility of the provided emergency information forms (EIFs) in the acute medical management of CMC.MethodsWe sampled from two key stakeholder groups in the acute management of CMC: four focus groups with emergency medical providers from rural and urban settings and eight key informant interviews with parents/caregivers enrolled in an emergency medical management program for CMC. Transcripts were thematically analyzed in NVivo© by two coders using a content analysis approach. The thematic codes were combined into a codebook and revised the themes present through combining relevant themes and developing of sub-themes until they reached consensus.ResultsAll parents/caregivers interviewed were enrolled in Project Austin and had an EIF. Emergency medical providers and parents/caregivers supported the usage of EIFs for CMC. Parents/caregivers also felt EIFs made emergency medical providers more prepared for their child. Providers identified that EIFs helped provide individualized care, however they were not confident the data was current and so felt unsure they could rely on the recommendations on the EIF.ConclusionEIFs are an easy way to engage parents, caregivers, and emergency medical providers about the specifics of a care for CMC during an emergency. Timely updates and electronic access to EIFs could improve their value for medical providers.

Development of a framework and research impact capture tool for nursing, midwifery, allied health professions, healthcare science, pharmacy and psychology (NMAHPPs)

BackgroundThere is an ambitious target to create a UK clinical academic workforce representing 1% of clinicians from nursing, midwifery, the allied health professions, healthcare science, pharmacy and psychology (NMAHPPs). Understanding and recording the impact that clinical academics make across healthcare services is crucial if we are to grow, value and support this highly skilled workforce group. However, it is currently difficult to systematically record, collate and report the impacts associated with NMAHPP research activity. The aims of this project were to i) develop a framework outlining the impacts that were important for key stakeholder groups, and ii) create and pilot a research impact capture tool to record these impacts.MethodsThe framework was developed from the existing literature. It was refined, remodelled and approved by multidisciplinary stakeholder involvement, including patient and public representatives, healthcare managers and research-active clinicians. The framework was converted into a series of questions to create an electronic research impact capture tool, which was also refined through feedback from these stakeholder groups. The impact capture tool was piloted with research-active clinicians across a large NHS Trust and its associated organisations.ResultsThe impact framework contained eight elements: clinical background, research and service improvement activities, research capacity building, research into practice, patients and service users, research dissemination, economics and research funding, and collaborations. Thirty individuals provided data for the research impact capture tool pilot (55% response rate). Respondents reported a range of positive impacts representing all elements of the framework. Importantly, research-activity appeared to be a key driver for recruitment and retention in the sample population.ConclusionsThe impact capture tool is a feasible method of recording the breadth of impacts associated with NMAHPP research activity. We encourage other organisations to collaboratively use and refine our impact capture tool, with the aim of standardising reporting, and facilitating discussions about research activity within clinical appraisal. Pooling and comparing data will also allow comparison between organisations, and assessment of change over time or after implementation of interventions aimed at supporting and increasing research activity.

P089 A pilot study to consider implementing a validated tool to improve the objective assessment method of methotrexate intolerance for a paediatric rheumatology department

Abstract Background/Aims This report identifies if the adoption of the Methotrexate Intolerance Severity Score improves the documentation and objective evaluation of the experiences of patients with Juvenile Idiopathic Arthritis, currently treated with methotrexate within in a local paediatric rheumatology service. In doing so, it will evidence any treatment failure resulting in a change of therapy, including the advocated escalation to more expensive and invasive biological therapies. Methods Literature was retrieved from electronic databases and published guidelines. Stakeholders were identified and approached via a variety of methods. Using the claims, concerns and issues framework to document their findings, a pilot study implementing the validated methotrexate intolerance severity score was conducted. The parents of the first ten patients accessing the local paediatric rheumatology advice line within a twelve-week period, who wished to discuss their child’s methotrexate therapy, were interviewed by the clinical nurse specialist team according to the methotrexate intolerance severity score. Analysis of the ten telephone assessments included the patient pharmacological and haematological evidence already established for each child, previous documentation of any methotrexate intolerance, and previous awareness of potential side effects of this drug therapy Results Designed without key stakeholder input, the methotrexate intolerance severity score improved documentation but focused on the gastrointestinal symptoms of intolerance only. The results of this pilot project indicated that although nausea and vomiting remained the two most common problems identified by all three key stakeholder groups (the parents, the CNS team and the original MISS article), it failed to objectively record a number of other commonly experienced signs and symptoms attributed to methotrexate treatment, assessing intolerance using only four of the nine most commonly reported side effects. Crucially it also failed to consider the pharmacokinetic and toxicity profile of methotrexate, nor did it have capacity to document a range of other parent reported symptoms. Although published in 2011, it has yet to be adopted for regular use within the UK paediatric rheumatology services. Conclusion Further work is required; inclusion of the objective findings that contribute to and mimic methotrexate intolerance e.g., hepatotoxicity should be considered in addition to further research regarding the patient experience of methotrexate intolerance. Incorporating the experiences of the patients and families would contribute to the relevance of the methotrexate intolerance severity score to key stakeholders. Resulting in a more objective assessment tool, this would improve measurement of methotrexate intolerance, ultimately quantifying intolerance and access to biologic therapies and improve the clinical comprehension of the patient experience of this ‘gold standard’ disease modifying anti-rheumatic drug therapy. Disclosure C. Tranter: None.

Socioeconomic dimensions of the Buccoo Reef Marine Park, an assessment of stakeholder perceptions towards enhanced management through MSP

Abstract The effective management of marine protected areas (MPAs) requires an in-depth understanding and assessment of the varying socioeconomic uses and users of the physical space. However, in some localities, little research is conducted on this aspect and in particular user perceptions on current and proposed management strategies for MPAs. Such site-specific evaluations are imperative to developing context-dependent management measures. The aim of this study was to identify the spatial extent of socioeconomic activities, assess stakeholders’ awareness of the varying socioeconomic activities that take place in the Buccoo Reef Marine Park, Tobago, and gauge stakeholder support for proposed management mechanisms, namely marine spatial planning (MSP). Targeted surveys were conducted over a six-month period, to obtain perspectives from key Marine Park stakeholder groups, namely marine resource managers, visitors, and tour operators. The results indicated over ten main socioeconomic activities occurring within the Marine Park, with multiple activities taking place in the same location. Results also suggest that stakeholders are aware of the conflicts that occur between various users of the space with jet skis operation identified as the primary contributor. Finally, using a Likert scale, stakeholder groups predominantly rated the need for a marine spatial plan as “necessary.” This research, therefore, documents existing socioeconomic activities in the Buccoo Reef Marine Park and highlights the importance of stakeholder engagement in future management strategies.

‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research


 
 
 
 Background. Rheumatic heart disease (RHD) is a preventable chronic cardiac condition that causes over 350 000 deaths annually, largely in low and middle-income countries, as a direct result of structural inequalities and inadequate access to comprehensive healthcare. People living with and affected by this disease are a key stakeholder group and need to be directing research priorities.
 Objective. To improve care and provide direction for future research, a group of qualitative researchers and pe living with RHD from six countries convened in Cape Town in 2016.
 Methods. People with RHD shared their lived experiences while RHD researchers, clinicians and advocates presented a spectrum of qualitative research methods to explore these experiences. The Continuum of Care© (CoC, developed by the Medtronic Foundation) was used as a framework to guide participant discussions. Thematic summaries of the discussions were undertaken in an iterative process throughout the workshop.
 Results. Three themes emerged in the summaries: there is no ‘typical’ patient journey; a biomedical focus on RHD does not reflect people’s lived experiences; and a diversity of research methods is required to investigate experiences of people living with RHD.Practice implications. Qualitative research methods are invaluable for allowing patient ‘voices’ to be heard. To this end, qualitative approaches should be incorporated in all RHD research to ensure maximum benefit for patients.
 Conclusion. Greater understanding of the patient journey was gained for strengthening and expanding the global RHD research agenda. Future research should reflect on and incorporate the realities of patients’ lived experiences, and these experiences should be integrated into healthcare models for chronic conditions.