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Normothermic regional perfusion (NRP) is a promising technology to improve organ transplantation outcomes by reversing ischemic injury caused by controlled donation after circulatory determination of death. However, it has not yet been implemented in Canada due to ethical questions. These issues must be resolved to preserve public trust in organ donation and transplantation. This qualitative, constructivist grounded theory study sought to understand how those most impacted by NRP perceived the ethical implications. We interviewed 29 participants across stakeholder groups of donor families, organ recipients, donation and transplantation system leaders, and care providers. The interview protocol included a short presentation about the purpose of NRP and procedures in abdomen versus chest and abdomen NRP, followed by questions probing potential violations of the dead donor rule and concerns regarding brain reperfusion. The results present a grounded theory placing NRP within a trust-building continuum of care for the donor, their family, and organ recipients. Stakeholders consistently described both forms of NRP as an ethical intervention, but their rationales were predicated on assumptions that neurologic criteria for death had been met following circulatory death determination. Empirical validation of these assumptions will help ground the implementation of NRP in a trust-preserving way.
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A shift in the traditional technocentric view of medical device design to a human-centered one is needed to bridge existing translational gaps and improve health equity. To ensure the successful and equitable adoption of health technology innovations, engineers must think beyond the device and the direct end user and must seek a more holistic understanding of broader stakeholder needs and the intended context of use early in a design process. The objectives of this review article are (a) to provide rationale for the need to incorporate meaningful stakeholder analysis and contextual investigation in health technology development and biomedical engineering pedagogy, (b) to review existing frameworks and human- and equity-centered approaches to stakeholder engagement and contextual investigation for improved adoption of innovative technologies, and (c) to present case studyexamples of medical device design that apply these approaches to bridge the gaps between biomedical engineers and the contexts for which they are designing.
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Tecnologia Biomédica , Desenho de Equipamento , HumanosRESUMO
To assess the effectiveness of culturally and linguistically tailored, peer-delivered obstructive sleep apnea education and of social support to increase adherence to physician-recommended obstructive sleep apnea evaluation among blacks. In a two-arm randomised controlled trial, we ascertained the effectiveness of peer-delivered obstructive sleep apnea education in increasing obstructive sleep apnea evaluation among 319 blacks at risk of obstructive sleep apnea (intervention = 159 and control = 160); their average age was 47 ± 12.9 years, and 41% were male. Obstructive sleep apnea risk was assessed with the Apnea Risk Evaluation System questionnaire, administered in community venues. Participants in the intervention arm received tailored obstructive sleep apnea education during a 6 month period; those in the control arm received standard sleep and healthy lifestyle information. Analysis focussed on the effectiveness of peer-delivered obstructive sleep apnea education on adherence to obstructive sleep apnea evaluation, but also considered the role of psychosocial factors. The results showed no significant differences in baseline demographic and clinical measures when contrasting participants in the study arms. The adherence rates for home-based obstructive sleep apnea evaluation in the intervention and control arms were 45.9% and 45.6%, respectively. Overall, participants in both study arms (adherers) who underwent obstructive sleep apnea evaluations were likely to experience a greater level of social support (8.2 ± 2.4 vs. 7.3 ± 2.4; p = 0.06). Moreover, adherers showed greater psychosocial scores (i.e., Dysfunctional Beliefs and Attitudes about Sleep scale, Apnea Beliefs Scale (ABS) (and Apnea Knowledge) compared with non-adherers (6.0 ± 1.8 vs. 4.9 ± 2.2; p = 0.02; 77.0 ± 7.1 vs. 73.2 ± 7.4; p = 0.04, and 6.4 ± 3.1 vs. 7.6 ± 2.4; p = 0.06, respectively). The results of the present randomised controlled trial favoured a potential role of peer-based social support and psychosocial factors, associated with obstructive sleep apnea adherence behaviour.
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OBJECTIVES: This study develops a prioritization framework to aid healthcare funding decision making in health technology assessment (HTA) in Australia using a multiple criteria decision analysis (MCDA) approach. METHODS: MCDA frameworks for HTAs were reviewed through literature survey to identify the initial criteria and levels within each criterion. Key stakeholders and experts were consulted to confirm these criteria and levels. A conjoint analysis using 1000Minds was undertaken with policy makers from the Department of Health to establish ranking criteria and weighting scores. Monte Carlo simulations were used to examine the sensitivity of findings to factors affecting the ranking and weighting scores. The MCDA was then applied to 6 examples of chronic care models or technologies projects to demonstrate the performance of this approach. RESULTS: Five criteria (clinical efficacy/effectiveness, safety and tolerability, severity of the condition, quality/uncertainty, and direct impact on healthcare costs) were consistently ranked highest by healthcare decision makers. Among the criteria, patient-level health outcomes were considered the most important, followed by social and ethical values. The analyses were robust to inform the uncertainty in the parameter. CONCLUSIONS: This study has developed an MCDA tool that effectively integrates key priorities for HTA reviews, reflecting the values and preferences of healthcare stakeholders in Australia. Although this tool aims to align the assessment process more closely with health benefits, it also highlights the importance of considering other criteria.
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Payments for ecosystem services (PES) are widely applied incentive-based instruments with diverse objectives that increasingly include biodiversity conservation. Yet, there is a gap in understanding of how to best assess and monitor programs' biodiversity outcomes. We examined perceptions and drivers of engagement related to biodiversity monitoring through surveys among current PES participants in 7 communities in Mexico's Selva Lacandona. We conducted workshops among survey participants that included training and field deployment of tools used to monitor biodiversity and land cover, including visual transects, camera traps, acoustic recorders, and forest cover satellite images. We conducted pre- and postworkshop surveys in each community to evaluate changes in respondents' perceptions following exposure to biodiversity monitoring training and related field activities. We also reviewed existing research on participatory environmental management and monitoring approaches. One quarter of current PES participants in the study area participated in our surveys and workshops. The majority stated interest in engaging in diverse activities related to the procedural aspects of biodiversity monitoring (e.g., planning, field data collection, results dissemination) and acknowledged multiple benefits of introducing biodiversity monitoring into PES (e.g., knowledge and capacity building, improved natural resource management, and greater support for conservation). Household economic reliance on PES was positively associated with willingness to engage in monitoring. Technical expertise, time, and monetary constraints were deterrents. Respondents were most interested in monitoring mammals, birds, and plants and using visual transects, camera traps, and forest cover satellite images. Exposure to monitoring enhanced subsequent interest in monitoring by providing respondents with new insights from their communities related to deforestation and species' abundance and diversity. Respondents identified key strengths and weaknesses of applying different monitoring tools, which suggests that deploying multiple tools simultaneously can increase local engagement and produce complementary findings and data. Overall, our findings support the relevance and usefulness of incorporating participatory biodiversity monitoring into PES.
Explorando las percepciones locales y los impulsores de la participación en el monitoreo de la biodiversidad entre participantes de esquemas de pagos por servicios ambientales en el sureste de México Resumen Los pagos por servicios ambientales (PSA) son instrumentos basados en incentivos ampliamente aplicados cuyos diversos objetivos incluyen cada vez más la conservación de la biodiversidad. Sin embargo, existe una brecha en la comprensión de cómo evaluar y monitorear los resultados de los programas en materia de biodiversidad. Examinamos las percepciones y los impulsores de la participación relacionados al monitoreo de la biodiversidad a través de encuestas entre participantes actuales de PSA en siete comunidades de la Selva Lacandona de México. Realizamos talleres entre los participantes de las encuestas que incluyeron capacitación y despliegue en campo de herramientas utilizadas para monitorear la biodiversidad y la cobertura del suelo, incluidos transectos visuales, cámaras trampa, grabadores acústicos e imágenes satelitales de la cobertura forestal. Realizamos encuestas antes y después del taller en cada comunidad para evaluar los cambios en las percepciones de los participantes tras su involucramiento en la capacitación de monitoreo de biodiversidad y las actividades de campo relacionadas. También revisamos la investigación existente sobre enfoques de monitoreo y gestión ambiental participativa. Una cuarta parte de los participantes actuales de PES en el área de estudio participaron en nuestras encuestas y talleres. La mayoría declaró interés en participar en diversas actividades relacionadas con los aspectos procesales del monitoreo de la biodiversidad (por ejemplo, planificación, recopilación de datos de campo, difusión de resultados) y reconoció múltiples beneficios de introducir el monitoreo de la biodiversidad en los PSA (por ejemplo, creación de conocimientos y capacidades, mejora de la gestión de los recursos naturales, y mayor apoyo a la conservación). La dependencia económica de los hogares de los PSA se asoció positivamente con la voluntad de participar en el monitoreo. Los factores inhibidores fueron la experiencia técnica, el tiempo y las limitaciones monetarias. Los encuestados estaban más interesados en monitorear mamíferos, aves y plantas y en utilizar transectos visuales, cámaras trampa e imágenes satelitales de la cubierta forestal. La exposición al monitoreo aumentó el interés posterior en el monitoreo al brindar a los encuestados nuevos conocimientos de sus comunidades relacionados con la deforestación y la abundancia y diversidad de especies. Los encuestados identificaron fortalezas y debilidades clave al aplicar diferentes herramientas de monitoreo, lo que sugiere que implementar múltiples herramientas simultáneamente puede aumentar la participación local y producir hallazgos y datos complementarios. En general, nuestros hallazgos respaldan la relevancia y utilidad de incorporar el monitoreo participativo de la biodiversidad en los PSA.
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PURPOSE: Suspected seizures present challenges for ambulance services, with paramedics reporting uncertainty over whether or not to convey individuals to emergency departments. The Risk of ADverse Outcomes after a Suspected Seizure (RADOSS) project aims to address this by developing a risk assessment tool utilizing structured patient care record and dispatch data. It proposes a tool that would provide estimates of an individual's likelihood of death and/or recontact with emergency care within 3 days if conveyed compared to not conveyed, and the likelihood of an 'avoidable attendance' occurring if conveyed. Knowledge Exchange workshops engaged stakeholders to resolve key design uncertainties before model derivation. METHOD: Six workshops involved 26 service users and their significant others (epilepsy or nonepileptic attack disorder), and 25 urgent and emergency care clinicians from different English ambulance regions. Utilizing Nominal Group Techniques, participants shared views of the proposed tool, benefits and concerns, suggested predictors, critiqued outcome measures, and expressed functionality preferences. Data were analysed using Hamilton's Rapid Analysis. RESULTS: Stakeholders supported tool development, proposing 10 structured variables for predictive testing. Emphasis was placed on the tool supporting, not dictating, care decisions. Participants highlighted some reasons why RADOSS might struggle to derive a predictive model based on structured data alone and suggested some non-structured variables for future testing. Feedback on prediction timeframes for service recontact was received, along with advice on amending the 'avoidable attendance' definition to prevent the tool's predictions being undermined by potential overuse of certain investigations in hospital. CONCLUSION: Collaborative stakeholder engagement provided crucial insights that can guide RADOSS to develop a user-aligned, optimized tool.
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Serviços Médicos de Emergência , Humanos , Serviços Médicos de Emergência/métodos , Ambulâncias , Serviço Hospitalar de Emergência , Convulsões/diagnóstico , Convulsões/terapia , Medição de RiscoRESUMO
PURPOSE: Rigorously conducted pharmacoepidemiologic research requires methodologically complex study designs and analysis yet evaluates problems of high importance to patients and clinicians. Despite this, participation in and mechanisms for stakeholder engagement in pharmacoepidemiologic research are not well-described. Here, we describe our approach and lessons learned from engaging stakeholders, of varying familiarity with research methods, in a rigorous multi-year pharmacoepidemiologic research program evaluating the comparative effectiveness of diabetes medications. METHODS: We recruited 5 patient and 4 clinician stakeholders; each was compensated for their time. Stakeholders received initial formal training in observational research and pharmacoepidemiologic methods sufficient to enable contribution to the research project. After onboarding, stakeholder engagement meetings were held virtually, in the evening, 2-3 times annually. Each was approximately 90 min and focused on 1-2 specific questions about the project, with preparatory materials sent in advance. RESULTS: Stakeholder meeting attendance was high (89%-100%), and all stakeholders engaged with the research project, both during and between meetings. Stakeholders reported positive experiences with meetings, satisfaction, and interest in the research project and its findings, and dedication to the success of the project's goals. They affirmed the value of receiving materials to review in advance and the effectiveness of a virtual platform. Their contributions included prioritizing and suggesting research questions, optimizing written evidence briefs for a lay audience, and guidance on broader topics such as research audience and methods of dissemination. CONCLUSIONS: Stakeholder engagement in pharmacoepidemiologic research using complex study designs and analysis is feasible, acceptable, and positively impacts the research project.
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Diabetes Mellitus , Participação dos Interessados , Humanos , Projetos de Pesquisa , FarmacoepidemiologiaRESUMO
PURPOSE: Limited examples exist of successful Patient Reported Outcome Measure (PROM) implementation across an entire healthcare organisation. The aim of this study was to use a multi-stakeholder co-design process to develop a PROM collection system, which will inform implementation of routine collection of PROMs across an entire healthcare organisation. METHODS: Co-design comprised semi-structured interviews with clinicians (n = 11) and workshops/surveys with consumers (n = 320). The interview guide with clinicians focused on their experience using PROMs, preferences for using PROMs, and facilitators/barriers to using PROMs. Co-design activities specific to consumers focused on: (1) how PROMs will be administered (mode), (2) when PROMs will be administered (timing), (3) who will assist with PROMs collection, and (4) how long a PROM will take to complete. Data were analysed using a manifest qualitative content analysis approach. RESULTS: Core elements identified during the co-design process included: PROMs collection should be consumer-led and administered by someone other than a clinician; collection at discharge from the healthcare organisation and at 3-6 months post discharge would be most suitable for supporting comprehensive assessment; PROMs should be administered using a variety of modes to accommodate the diversity of consumer preferences, with electronic as the default; and the time taken to complete PROMs should be no longer than 5-10 min. CONCLUSION: This study provides new information on the co-design of a healthcare organisation-wide PROM collection system. Implementing a clinician and patient informed strategy for PROMs collection, that meets their preferences across multiple domains, should address known barriers to routine collection.
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Assistência ao Convalescente , Medidas de Resultados Relatados pelo Paciente , Humanos , Qualidade de Vida/psicologia , Alta do Paciente , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Valuing child health is critical to assessing the value of healthcare interventions for children. However, there remain important methodological and normative issues. This qualitative study aimed to understand the views of Canadian stakeholders on these issues. METHODS: Stakeholders from health technology assessment (HTA) agencies, pharmaceutical industry representatives, healthcare providers, and academic researchers/scholars were invited to attend an online interview. Semi-structured interviews were designed to focus on: (1) comparing the 3-level and 5-level versions of the EQ-5D-Y; (2) source of preferences for valuation (adults vs. children); (3) perspective of valuation tasks; and (4) methods for valuation (discrete choice experiment [DCE] and its variants versus time trade-off [TTO]). Participants were probed to consider HTA guidelines, cognitive capacity, and potential ethical concerns. All interviews were recorded and transcribed verbatim. Framework analysis with the incidence density method was used to analyze the data. RESULTS: Fifteen interviews were conducted between May and September 2022. 66.7% (N = 10) of participants had experience with economic evaluations, and 86.7% (N = 13) were parents. Eleven participants preferred the EQ-5D-Y-5L. 12 participants suggested that adolescents should be directly involved in child health valuation from their own perspective. The participants were split on the ethical concerns. Eight participants did not think that there was ethical concern. 11 participants preferred DCE to TTO. Among the DCE variants, 6 participants preferred the DCE with duration to the DCE with death. CONCLUSIONS: Most Canadian stakeholders supported eliciting the preferences of adolescents directly from their own perspective for child health valuation. DCE was preferred if adolescents are directly involved.
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Pesquisa Qualitativa , Participação dos Interessados , Humanos , Canadá , Criança , Adolescente , Masculino , Feminino , Participação dos Interessados/psicologia , Qualidade de Vida , Entrevistas como Assunto , Saúde da Criança , Avaliação da Tecnologia Biomédica , Adulto , Pessoal de Saúde/psicologia , Inquéritos e QuestionáriosRESUMO
Mental illnesses comprise the single largest source of health-related economic burden globally and low-and middle-income countries (LMICs) are disproportionately affected. Many individuals with schizophrenia do not receive evidence-based, psychosocial interventions as these are largely unavailable, undeveloped, and under-researched in LMICs. Involving service-users and carers in the design of interventions is crucial to ensure stakeholder needs are adequately addressed by the intervention and to aid successful implementation. We aimed to explore the views and perspectives of different stakeholder groups about the delivery, format, and content of family interventions for people living with schizophrenia in Indonesia as a first step towards developing evidence-based, acceptable family interventions. This study used a qualitative design comprising single stakeholder focus groups. Data were analysed separately using the framework approach incorporating deductive and inductive coding within an existing heuristic framework. 51 participants consented to take part in this study comprising six stakeholder consultation groups including service-users (n = 15), caregivers (n = 15) and healthcare professionals (n = 21). Service users were diagnosed with schizophrenia. Caregivers comprised parents (n = 10, 67%), brothers (n = 2, 13%), sister (n = 1, 7%) and husbands (n = 2, 13%). Healthcare professionals were working as nurses (n = 6, 29%), doctors (n = 5, 23%) or cadre's (n = 10, 48%). Caregiver and service-user respondents had limited knowledge or experience of structured family interventions. There was strong support for such interventions, however, for effective delivery a number of challenges exist in terms of widespread stigmatised views, low expectations for involvement in sharing decisions about care and treatment, views that healthcare professionals are expert and have the authority to delegate tasks to families such as responsibility for ensuring medication adherence and understanding the need to balance the needs of both service-users and families when there are conflicting agendas for treatment. These findings can support the development of evidence-based family interventions for families of those with schizophrenia in Indonesia, as user-informed interventions enhance engagement, satisfaction, and adherence to family interventions.
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Esquizofrenia , Masculino , Humanos , Esquizofrenia/terapia , Indonésia , Pesquisa Qualitativa , Grupos Focais , Pessoal de SaúdeRESUMO
BACKGROUND: Successful efforts to encourage uptake of subdermal contraceptive implants, with a lifespan of three to five years, necessitate planning to ensure that quality removal services are available when desired. In Burkina Faso, implant use has tripled over the past 8 years and now comprises almost half of the contraceptive method mix. Population Monitoring for Action (PMA) surveys identified barriers to obtaining quality removal when desired, particularly when the implant is not palpable, or providers lack needed skills or supplies. The Expanding Family Planning Choices (EFPC) project supported ministries of health in four countries with evaluation and strengthening of implant removal services. METHODS: An implant removal landscape assessment was conducted at 24 health facilities in three regions of Burkina Faso with high implant use that included provider observations of implant removal, interviews with providers and health facility managers, and facility readiness surveys. The project used landscape data to mobilize stakeholders through a series of participatory workshops to develop a collaborative roadmap and commit to actions supporting quality implant removals. RESULTS: Landscape findings revealed key gaps in provision of quality removal services, including high levels of provider confidence for implant insertion and removal (82% and 71%, respectively), low competence performing simple and difficult removals (19.2% and 11.1%, respectively), inadequate supplies and equipment (no facilities had all necessary materials for removal), lack of difficult removal management systems, and a lack of standard data collection tools for removal. Exposure to the data convinced stakeholders to focus on removals rather than expanding insertion services. While not all roadmap commitments were achieved, the process led to critical investments in quality implant removals. CONCLUSION: Landscape data revealed that facilities lack needed supplies and equipment, and providers lack skills needed to perform quality implant removals, limiting client reproductive choice. Disseminating this data enabled stakeholders to identify and commit to evidence-based priority actions. Stakeholders have since capitalized on program learnings and the roadmap, including following MOH guidance for implant removal supplies and health provider training. Our experience in Burkina Faso offers a replicable model of how data can direct collective action to improve quality of contraceptive implant removals.
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Remoção de Dispositivo , Burkina Faso , Humanos , Feminino , Remoção de Dispositivo/métodos , Implantes de Medicamento , Serviços de Planejamento Familiar/métodos , Participação dos Interessados , Anticoncepcionais Femininos , Instalações de Saúde/estatística & dados numéricosRESUMO
Through a national cross-sectional survey, the present study investigated the use and content of injury prevention training (IPT), and associated attitudes and beliefs, involving stakeholders in Danish girls' and women's elite football (U14, U16, U18, and Danish Women's League teams). A total of 168 stakeholders (coaches, physical performance coaches, physiotherapists, medical doctors, and club management) from 18 Danish elite clubs were invited to participate. Of these, 158 were eligible to participate, and 110 participants (69.6% response rate) provided 191 valid survey responses, as some provided more than one response due to multiple affiliations within the same club. The use of IPT ranged from 91.1% to 100% across team levels, with approximately 50% reporting up to 1-2 h/week. Interestingly, only 52.9%-72.7% of the responses indicated use of an evidence-based IPT program, with lowest adoption at the U14 and Danish Women's League teams. The FIFA 11+ was the most used evidence-based IPT program. The majority of the participants (>72%) had positive perceptions regarding IPT impact on injury reduction. These findings indicate that, while IPT is broadly used across Danish girls' and women's elite football teams, the implementation of evidence-based IPT programs varies, with lower adoption of these programs among the youngest and senior elite teams. Hence, there is a need to enhance integration of IPT programs proven effective in girls' and women's elite football. Notably, stakeholders expressed positive perceptions regarding the impact of IPT on injury reduction, which provides valuable support for future efforts to strengthen IPT in football practice.
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Traumatismos em Atletas , Futebol , Humanos , Dinamarca , Feminino , Futebol/lesões , Estudos Transversais , Traumatismos em Atletas/prevenção & controle , Adolescente , Inquéritos e Questionários , Condicionamento Físico Humano/métodos , Adulto Jovem , Adulto , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
INTRODUCTION: Patient and public involvement is vital for high-quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice-based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. METHODS: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. RESULTS: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. CONCLUSION: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. PATIENT OR PUBLIC CONTRIBUTION: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co-production of interventions and information material, and the interpretation of data.
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Comitês Consultivos , Medicina de Família e Comunidade , Pesquisa Qualitativa , Pesquisadores , Humanos , Masculino , Feminino , Participação do Paciente , Pessoa de Meia-Idade , AdultoRESUMO
OBJECTIVES: The purpose of this study was to engage key stakeholders in a health research priority-setting process to identify, prioritize and produce a community-driven list of research questions addressing intersectional issues on mental health and addictions (MHA) in acquired brain injury (ABI). METHODS: A multiphasic health research priority-setting process was co-designed and executed with community-based stakeholders, including researchers, health professionals, clinicians, service providers, representatives from brain injury associations, policy makers and people with lived experience of ABI and MHA, including patients and their family members. Stakeholders' ideas led to the generation of research questions, which were prioritized at a 1-day workshop. RESULTS: Fifty-nine stakeholders participated in the priority-setting activity during the workshop, which resulted in a rank-ordered list of the top 10 questions for research addressing the intersections of ABI and MHA. Questions identified touched on several pressing issues (e.g., opioid crisis, homelessness), encompassed multiple subtypes of ABI (e.g., hypoxic-ischaemic, mild traumatic), and involved different domains (e.g., identification, intervention) of health research. CONCLUSIONS: This community-driven health research priority-setting study identified and prioritized research questions addressing the intersections of ABI and MHA. Researchers and funding agencies should use this list to inform their agendas and address stakeholders' most urgent needs, fostering meaningful improvements to clinical services. PATIENT OR PUBLIC CONTRIBUTION: An 11-person working group comprised of people with lived experience, service providers, researchers, healthcare professionals and other key stakeholders collaboratively developed and informed the scope, design, methodology and interpretation of this study. Over 50 community-based stakeholders contributed to the research priority-setting activity. One co-author is a person with lived experience.
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Lesões Encefálicas , Participação dos Interessados , Humanos , Lesões Encefálicas/terapia , Transtornos Relacionados ao Uso de Substâncias/terapia , Saúde Mental , Prioridades em SaúdeRESUMO
BACKGROUND: Ageing in place is a common desire among older adults and people in need of care. Accessible housing and ambient assisted living (AAL) technologies can help to live independently at home. However, they cannot replace the human support network of informal caregivers, healthcare professionals and social workers. The needs of these stakeholders should be considered and analysed in order to develop user-friendly and acceptable (digital) solutions for ageing in place while supporting human support networks in fulfilling their roles. This paper presents the first step for a comprehensive multi-level needs analysis within the framework of an user-centered design thinking approach. METHODS: Guideline-based interviews were conducted with healthcare professionals, social workers and an informal caregiver to collect data about the needs of older adults as well as people in need of care, and their human support networks. RESULTS: The call for more information that is easier to find is a common desire of the three groups. There is agreement on system-based communication and orientation problems, the existence of physical and psychological stress exacerbated by a lack of human resources, the desire for personalised care, the need to feel safe and supported in emergencies, and the need for advice and help with administrative tasks. Overall, the needs of one group are closely linked to those of the other. CONCLUSION: Stakeholder selection and diversity are decisive for findings about ageing in place. The overlaps between the stakeholders' needs offer chances and challenges at the same time for the development of user-friendly, acceptable (digital) solutions and products that support ageing in place.
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Envelhecimento , Vida Independente , Humanos , Idoso , Avaliação das Necessidades , Cuidadores/psicologia , Pesquisa QualitativaRESUMO
BACKGROUND: While oral health often takes a backseat to other health domains, it silently affects nearly half of the Worldwide population. The DELIVER project, funded by the EU's Horizon Europe program, seeks to develop a blueprint model for improving the quality of oral health care for everyone. METHODS: Applying the Nominal Group Technique (NGT), 17 stakeholders from various backgrounds participated in identifying pressing issues for oral care quality improvement across practice, community, and policy levels. RESULTS: The results revealed significant differences at the different levels, with accessibility emerging as a prominent issue, encompassing affordability, availability, and acceptability of oral healthcare services. CONCLUSIONS: These findings emphasizes the need for policy reforms, increased investments, and a shift towards preventive and patient-centered dental care practices. It highlights the importance of collaborative efforts with multi-stakeholders and prioritizing pressing issues on a multi-level to drive positive change in improving oral care quality.
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União Europeia , Melhoria de Qualidade , Humanos , Assistência Odontológica/normas , Saúde Bucal/normas , Acessibilidade aos Serviços de Saúde , Europa (Continente) , Participação dos Interessados , Política de SaúdeRESUMO
BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.
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Cuidadores , Capital Social , Humanos , Grupos de Autoajuda , Apoio Social , Serviço SocialRESUMO
BACKGROUND: The Global Evidence, Local Adaptation (GELA) project aims to maximise the impact of research on poverty-related diseases by increasing researchers' and decision-makers' capacity to use global research to develop locally relevant guidelines for newborn and child health in Malawi, Nigeria and South Africa. To facilitate ongoing collaboration with stakeholders, we adopted an Integrated Knowledge Translation (IKT) approach within GELA. Given limited research on IKT in African settings, we documented our team's IKT capacity and skills, and process and experiences with developing and implementing IKT in these countries. METHODS: Six IKT champions and a coordinator formed the GELA IKT Working Group. We gathered data on our baseline IKT competencies and processes within GELA, and opportunities, challenges and lessons learned, from April 2022 to March 2023 (Year 1). Data was collected from five two-hour Working Group meetings (notes, presentation slides and video recordings); [2] process documents (flowcharts and templates); and [3] an open-ended questionnaire. Data was analysed using a thematic analysis approach. RESULTS: Three overarching themes were identified: [1] IKT approach applied within GELA [2], the capacity and motivations of IKT champions, and [3] the experiences with applying the GELA IKT approach in the three countries. IKT champions and country teams adopted an iterative approach to carry out a comprehensive mapping of stakeholders, determine stakeholders' level of interest in and influence on GELA using the Power-Interest Matrix, and identify realistic indicators for monitoring the country-specific strategies. IKT champions displayed varying capacities, strong motivation, and they engaged in skills development activities. Country teams leveraged existing relationships with their National Ministries of Health to drive responses and participation by other stakeholders, and adopted variable communication modes (e.g. email, phone calls, social media) for optimal engagement. Flexibility in managing competing interests and priorities ensured optimal participation by stakeholders, although the time and resources required by IKT champions were frequently underestimated. CONCLUSIONS: The intentional, systematic, and contextualized IKT approach carried out in the three African countries within GELA, provides important insights for enhancing the implementation, feasibility and effectiveness of other IKT initiatives in Africa and similar low- and middle-income country (LMIC) settings.
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Pesquisa Translacional Biomédica , Humanos , África do Sul , Malaui , Nigéria , Pesquisa Translacional Biomédica/organização & administração , Recém-Nascido , Fortalecimento InstitucionalRESUMO
BACKGROUND: Suicide prevention requires diverse, integrated, and evidence-based measures. Comprehensive evaluation of interventions and reliable suicide data are crucial for guiding policy-making and advancing suicide prevention efforts. This study aimed to analyze current issues and gaps in the evaluation of suicide prevention measures and the quality of suicide data in Germany, Austria, and Switzerland to derive specific recommendations for improvement. METHODS: Online, semi-structured interviews were conducted with 36 experts in suicide prevention from Germany, Austria, and Switzerland, covering insights from policy, science, and practice. The interviews took place between September 2022 and February 2023, were audio-recorded, transcribed verbatim, and analyzed using the Framework method. RESULTS: While solid evidence supports the effectiveness of some suicide prevention interventions, experts indicated that the evaluation of many other measures is weak. Conducting effectiveness studies in suicide prevention presents a range of methodological and practical challenges, including recruitment difficulties, choosing adequate outcome criteria, ethical considerations, and trade-offs in allocating resources to evaluation efforts. Many interviewees rated the quality of national suicide statistics in Germany, Austria, and Switzerland as comparatively high. However, they noted limitations in the scope, timeliness, and reliability of these data, prompting some regions to implement their own suicide monitoring systems. None of the three countries has national routine data on suicide attempts. CONCLUSION: While some challenges in evaluating suicide prevention measures are inevitable, others can potentially be mitigated. Evaluations could be enhanced by combining traditional and innovative research designs, including intermediate outcomes and factors concerning the implementation process, and employing participatory and transdisciplinary research to engage different stakeholders. Reliable suicide data are essential for identifying trends, supporting research, and designing targeted prevention measures. To improve the quality of suicide data, a standardized monitoring approach, including uniform definitions, trained professionals, and cross-sector agreement on leadership and financing, should be pursued. This study provides actionable recommendations and highlights existing good practice approaches, thereby supporting decision-makers and providing guidance for advancing suicide prevention on a broader scale.
Assuntos
Entrevistas como Assunto , Pesquisa Qualitativa , Prevenção do Suicídio , Humanos , Suíça , Áustria , Alemanha , Confiabilidade dos Dados , Suicídio/psicologia , Suicídio/estatística & dados numéricos , Feminino , MasculinoRESUMO
BACKGROUND: Sub-Saharan Africa is unlikely to achieve sustainable development goal (SDG) 3 on maternal and neonatal health due to perceived sub-standard maternal and newborn care in the region. This paper sought to explore the opinions of stakeholders on intricacies dictating sub-standard emergency obstetric and newborn care (EmONC) in health facilities in Northern Ghana. METHODS: Drawing from a qualitative study design, data were obtained from six focus group discussions (FGDs) among 42 health care providers and 27 in-depth interviews with management members, clients and care takers duly guided by the principle of data saturation. Participants were purposively selected from basic and comprehensive level facilities. Data analysis followed Braun and Clarke's qualitative thematic analysis procedure. RESULTS: Four themes and 13 sub-themes emerged as root drivers to sub-standard care. Specfically, the findings highlight centralisation of EmONC, inadequate funding, insufficient experiential training, delay in recruitment of newly trained essential staff and provider disinterest in profession. CONCLUSION: Setbacks in the training and recruitment systems in Ghana, inadequate investment in rural health coupled with extent of health provider inherent disposition to practice may be partly responsible for sub-standard obstetric care in the study area. Interventions targeting the afore-mentioned areas may reduce events of sub-standard care.