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1.
BMC Health Serv Res ; 24(1): 698, 2024 Jun 03.
Article in English | MEDLINE | ID: mdl-38831287

ABSTRACT

BACKGROUND: Functional somatic symptoms (FFS) and bodily distress disorders are highly prevalent across all medical settings. Services for these patients are dispersed across the health care system with minimal conceptual and operational integration, and patients do not currently access therapeutic offers in significant numbers due to a mismatch between their and professionals' understanding of the nature of the symptoms. New service models are urgently needed to address patients' needs and to align with advances in aetiological evidence and diagnostic classification systems to overcome the body-mind dichotomy. METHOD: A panel of clinical experts from different clinical services involved in providing aspects of health care for patients with functional symptoms reviewed the current care provision. This review and the results from a focus group exploration of patients with lived experience of functional symptoms were explored by the multidisciplinary expert group, and the conclusions are summarised as recommendations for best practice. RESULTS: The mapping exercise and multidisciplinary expert consultation revealed five themes for service improvement and pathway development: time/access, communication, barrier-free care, choice and governance. Service users identified four meta-themes for best practice recommendations: focus on healthcare professional communication and listening skills as well as professional attributes and knowledge base to help patients being both believed and understood in order to accept their condition; systemic and care pathway issues such as stronger emphasis on primary care as the first point of contact for patients, resources to reduce the length of the patient journey from initial assessment to diagnosis and treatment. CONCLUSION: We propose a novel, integrated care pathway for patients with 'functional somatic disorder', which delivers care according to and working with patients' explanatory beliefs. The therapeutic model should operate based upon an understanding of the embodied nature of patient's complaints and provide flexible access points to the care pathway.


Subject(s)
Delivery of Health Care, Integrated , Medically Unexplained Symptoms , Somatoform Disorders , Humans , Delivery of Health Care, Integrated/organization & administration , Somatoform Disorders/therapy , Somatoform Disorders/diagnosis , Focus Groups , Stakeholder Participation , Female
2.
BMC Public Health ; 24(1): 1482, 2024 Jun 03.
Article in English | MEDLINE | ID: mdl-38831285

ABSTRACT

INTRODUCTION: In the World Health Organization European Region, an estimated 14 million people live with a chronic hepatitis B virus infection (HBV), and 12 million are affected by a hepatitis C virus infection (HCV). Uzbekistan bears a major burden of HBV and has one of the highest HCV prevalence in the region. Following a presidential decree in May 2022, significant funds were allocated to the viral hepatitis (VH) elimination program in Uzbekistan. The program expands VH testing to reach 500,000 people annually during 2022-2025 as part of the VH elimination strategy that includes the provision of free testing and affordable treatment. Exploring the existing barriers and facilitators to VH testing is pivotal for informing these interventions. METHODS: This study uses a cross-sectional qualitative design to identify and explore the barriers and facilitators to VH testing among the general population in Uzbekistan. We collected data during October-November 2022 through semi-structured interviews with 12 key informants (KIs) and 7 focus group discussions with two target populations: the general population and healthcare workers (HCW) in Tashkent, Uzbekistan. RESULTS: Following the capability-opportunity-motivation-behavior model (COM-B model) as a framework for the analysis, we identified major capability barriers to VH testing primarily linked to low health literacy and limited knowledge about VH types, symptoms, transmission, testing and treatment. Physical opportunity barriers included the time and financial costs associated with testing, diagnostics, and treatment. Sociocultural opportunity barriers involved anticipated negative reactions and stigmatization, particularly affecting women. Motivational barriers included a reluctance to be tested when asymptomatic and a general fear of receiving positive test results. The involvement of healthcare workers in promoting VH awareness and motivating the general population emerged as a facilitator. CONCLUSIONS: A multi-pronged approach is recommended to achieve VH testing goals among the general population, focusing on raising awareness and health literacy and creating an enabling environment that ensures easy accessibility and minimizing VH testing-associated costs.


Subject(s)
Health Personnel , Qualitative Research , Humans , Uzbekistan , Male , Cross-Sectional Studies , Female , Health Personnel/psychology , Adult , Middle Aged , Focus Groups , Mass Screening , Health Services Accessibility , Hepatitis, Viral, Human/diagnosis , Hepatitis, Viral, Human/prevention & control , Hepatitis, Viral, Human/epidemiology , Stakeholder Participation , Interviews as Topic
3.
BMC Health Serv Res ; 24(1): 569, 2024 May 02.
Article in English | MEDLINE | ID: mdl-38698386

ABSTRACT

BACKGROUND: The national breast screening programme in the United Kingdom is under pressure due to workforce shortages and having been paused during the COVID-19 pandemic. Artificial intelligence has the potential to transform how healthcare is delivered by improving care processes and patient outcomes. Research on the clinical and organisational benefits of artificial intelligence is still at an early stage, and numerous concerns have been raised around its implications, including patient safety, acceptance, and accountability for decisions. Reforming the breast screening programme to include artificial intelligence is a complex endeavour because numerous stakeholders influence it. Therefore, a stakeholder analysis was conducted to identify relevant stakeholders, explore their views on the proposed reform (i.e., integrating artificial intelligence algorithms into the Scottish National Breast Screening Service for breast cancer detection) and develop strategies for managing 'important' stakeholders. METHODS: A qualitative study (i.e., focus groups and interviews, March-November 2021) was conducted using the stakeholder analysis guide provided by the World Health Organisation and involving three Scottish health boards: NHS Greater Glasgow & Clyde, NHS Grampian and NHS Lothian. The objectives included: (A) Identify possible stakeholders (B) Explore stakeholders' perspectives and describe their characteristics (C) Prioritise stakeholders in terms of importance and (D) Develop strategies to manage 'important' stakeholders. Seven stakeholder characteristics were assessed: their knowledge of the targeted reform, position, interest, alliances, resources, power and leadership. RESULTS: Thirty-two participants took part from 14 (out of 17 identified) sub-groups of stakeholders. While they were generally supportive of using artificial intelligence in breast screening programmes, some concerns were raised. Stakeholder knowledge, influence and interests in the reform varied. Key advantages mentioned include service efficiency, quicker results and reduced work pressure. Disadvantages included overdiagnosis or misdiagnosis of cancer, inequalities in detection and the self-learning capacity of the algorithms. Five strategies (with considerations suggested by stakeholders) were developed to maintain and improve the support of 'important' stakeholders. CONCLUSIONS: Health services worldwide face similar challenges of workforce issues to provide patient care. The findings of this study will help others to learn from Scottish experiences and provide guidance to conduct similar studies targeting healthcare reform. STUDY REGISTRATION: researchregistry6579, date of registration: 16/02/2021.


Subject(s)
Algorithms , Artificial Intelligence , Breast Neoplasms , COVID-19 , Qualitative Research , Stakeholder Participation , Humans , Breast Neoplasms/diagnosis , Female , COVID-19/diagnosis , COVID-19/epidemiology , Early Detection of Cancer/methods , United Kingdom , SARS-CoV-2 , Scotland , Focus Groups
4.
Br J Nurs ; 33(9): 435-436, 2024 May 09.
Article in English | MEDLINE | ID: mdl-38722009

ABSTRACT

John Tingle, Lecturer in Law, Birmingham Law School, University of Birmingham, discuses some key NHS stakeholder perspectives on NHS patient safety.


Subject(s)
Patient Safety , State Medicine , State Medicine/organization & administration , Patient Safety/standards , Humans , United Kingdom , Stakeholder Participation
5.
Health Expect ; 27(3): e14063, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38711219

ABSTRACT

INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals (clinicians, genetic counsellors and scientists) and 20 carers completed qualitative semistructured interviews and custom-designed surveys. Carers undertook validated psychosocial questionnaires. Thematic and quantitative data analysis followed. RESULTS: Participants described high positive interest in advanced therapies, but low knowledge of, and access to, reliable information. The substantial 'therapeutic gap' and 'therapeutic odyssey' common to RNDs were recognised in five key themes: (i) unmet need and urgency for access; (ii) seeking information; (iii) access, equity and sustainability; (iv) a multidisciplinary and integrated approach to care and support and (v) difficult decision-making. Participants were motivated to intensify RND clinical trial activity and access to advanced therapies; however, concerns around informed consent, first-in-human trials and clinical trial procedures were evident. There was high-risk tolerance despite substantial uncertainties and knowledge gaps. RNDs with high mortality, increased functional burdens and no alternative therapies were consistently prioritised for the development of advanced therapies. However, little consensus existed on prioritisation to treatment access. CONCLUSIONS: This study highlights the need to increase clinician and health system readiness for the clinical translation of advanced therapeutics for RNDs. Co-development and use of educational and psychosocial resources to support clinical decision-making, set therapeutic expectations and promotion of equitable, effective and safe delivery of advanced therapies are essential. PATIENT OR PUBLIC CONTRIBUTION: Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.


Subject(s)
Nervous System Diseases , Rare Diseases , Humans , Rare Diseases/therapy , Cross-Sectional Studies , Nervous System Diseases/therapy , Female , Male , Australia , Adult , Caregivers/psychology , Surveys and Questionnaires , Interviews as Topic , Stakeholder Participation , Middle Aged , Health Personnel/psychology , Translational Research, Biomedical , Qualitative Research
6.
Sci Eng Ethics ; 30(3): 17, 2024 May 08.
Article in English | MEDLINE | ID: mdl-38720094

ABSTRACT

Wandering is a symptom of dementia that can have devastating consequences on the lives of persons living with dementia and their families and caregivers. Increasingly, caregivers are turning towards electronic tracking devices to help manage wandering. Ethical questions have been raised regarding these location-based technologies and although qualitative research has been conducted to gain better insight into various stakeholders' views on the topic, developers of these technologies have been largely excluded. No qualitative research has focused on developers' perceptions of ethics related to electronic tracking devices. To address this, we performed a qualitative semi-structured interview study based on grounded theory. We interviewed 15 developers of electronic tracking devices to better understand how they perceive ethical issues surrounding the design, development, and use of these devices within dementia care. Our results reveal that developers are strongly motivated by moral considerations and believe that including stakeholders throughout the development process is critical for success. Developers felt a strong sense of moral obligation towards topics within their control and a weaker sense of moral obligation towards topics outside their control. This leads to a perceived moral boundary between development and use, where some moral responsibility is shifted to end-users.


Subject(s)
Caregivers , Dementia , Interviews as Topic , Moral Obligations , Qualitative Research , Humans , Dementia/therapy , Caregivers/ethics , Wandering Behavior/ethics , Grounded Theory , Stakeholder Participation , Electronics/ethics , Female , Motivation/ethics
7.
J Glob Health ; 14: 04098, 2024 May 10.
Article in English | MEDLINE | ID: mdl-38721686

ABSTRACT

Background: Emergency obstetric and newborn care (EmONC) in Bangladesh focusses on maternal health, whereby it addresses childbirth and postpartum complications to ensure women's health and well-being. It was transitioned to a digital platform to overcome challenges with the paper-based EmONC register and we conducted implementation research to assess the outcome. Here we outline the stakeholder engagement process integral to the implementation research process. Methods: We adopted a four-step stakeholder engagement model based on the identification, sensitisation, involvement, and engagement of stakeholders. The approach was informed by previous experience, desk reviews, and expert consultations to ensure comprehensive engagement with stakeholders at multiple levels. Led by the Maternal Health Programme of the Government of Bangladesh, we involved high-power and high-interest stakeholders in developing a joint action plan for digitisation of the paper-based EmONC register. Finally, we demonstrated this digital EmONC register in real-life settings to stakeholders at different levels. Results: The successful demonstration process fostered government ownership and collaboration with multiple stakeholders, while laying the foundation for scalability and sustainability. Nevertheless, our experience highlighted that the stakeholder engagement process is context-driven, time-consuming, resource-intensive, iterative, and dynamic, and it requires involving stakeholders with varied expertise. Effective strategic planning, facilitation, and the allocation of sufficient time and resources are essential components for successful stakeholder engagement. Conclusions: Our experience demonstrates the potential of adopting the 'identification, sensitisation, involvement, and engagement' stakeholder engagement model. Success in implementing this model in diverse settings depends on leveraging knowledge gained during implementation, maintaining robust communication with stakeholders, and harnessing the patience and determination of the facilitating organisation.


Subject(s)
Stakeholder Participation , Humans , Bangladesh , Female , Pregnancy , Infant, Newborn , Maternal Health Services/organization & administration , Registries , Emergency Medical Services/organization & administration
8.
BMJ Open ; 14(5): e082598, 2024 May 02.
Article in English | MEDLINE | ID: mdl-38697756

ABSTRACT

OBJECTIVES: The burden of malaria has persistently been high in Ebonyi state and Nigeria despite long-standing collaborations with international partners with huge and increased amounts of financial investments. We explored the system-wide governance challenges of the Ebonyi State Malaria Elimination Programme (SMEP) and the factors responsible in order to make recommendations for malaria health system strengthening. DESIGN: We did a qualitative study informed by the health system governance framework by Mikkelsen-Lopez et al and Savedoff's concept of governance. SETTING AND PARTICIPANTS: Between 18 October 2022 and 8 November 2022, 25 semistructured face-to-face in-depth interviews were conducted in English with purposively selected key stakeholders in the Ebonyi SMEP aged 18 years or older with at least 2 years of involvement in the SMEP and who gave consent. ANALYSIS: Data were analysed deductively and the analytical strategy was informed by the framework method for the analysis of qualitative data by Gale et al. RESULTS: Many system-wide governance challenges of the SMEP were identified including the absence of state's strategic vision and plans for malaria elimination; very weak primary and secondary healthcare systems; inadequate financial allocation and untimely release of budgeted funds by the state government; lack of human resources for health and very poor mosquito net distribution system. Other challenges were inadequate stakeholders' participation; poor accountability culture; impaired transparency and corruption and impaired ability to address corruption. The fundamental responsible factors were the lack of state government's concern for people's welfare and lack of interest and commitment to the malaria elimination effort, chronic non-employment of staff and lack of human resources in the entire health sector including SMEP, and nepotism and godfatherism. CONCLUSIONS: The system-wide governance challenges and the responsible factors call for changing the 'business as usual' and refocusing on strengthening malaria health system governance in addressing the persisting malaria health problems in Ebonyi state (and Nigeria).


Subject(s)
Malaria , Qualitative Research , Humans , Nigeria , Malaria/prevention & control , Disease Eradication/organization & administration , Disease Eradication/methods , Stakeholder Participation , Delivery of Health Care/organization & administration , Interviews as Topic , Female , Male
9.
PLoS One ; 19(5): e0297489, 2024.
Article in English | MEDLINE | ID: mdl-38722852

ABSTRACT

BACKGROUND: There are few data reporting the needs and priorities of older adults in Brazil. This hampers the development and/or implementation of policies aimed at older adults to help them age well. The aim of this study was to understand areas of importance, priorities, enablers and obstacles to healthy ageing as identified by older adults and key stakeholders in both urban and rural environments. METHODS: Two locations were selected, one urban and one rural in the municipality of Santo André, in the metropolitan region of São Paulo (SP). Workshops for older adults (>60 y) and stakeholders were conducted separately in each location. The workshops incorporated an iterative process of discussion, prioritisation and ranking of responses, in roundtable groups and in plenary. Areas of commonality and differences between older adult and stakeholder responses were identified by comparing responses between groups as well as mapping obstacles and enablers to healthy ageing identified by older adults, to the priorities identified by stakeholder groups. The socio-ecologic model was used to categorise responses. RESULTS: There were few shared responses between stakeholders and older adults and little overlap between the top ranked responses of urban and rural groups. With respect to areas of importance, both stakeholder groups ranked policies for older people within their top five reponses. Both older adult groups ranked keeping physically and mentally active, and nurturing spirituality. There was a marked lack of congruence between older adults' obstacles and enablers to healthy ageing and stakeholder priorities, in both urban and rural settings. Most responses were located within the Society domain of the socio-ecologic model, although older adults also responded within the Individual/ Relationships domains, particularly in ranking areas of most importance for healthy ageing. CONCLUSIONS: Our results highlight substantial differences between older adults and stakeholders with respect to areas of importance, priorities, enablers and obstacles to healthy ageing, and point to the need for more engagement between those in advocacy and policymaking roles and the older people whose needs they serve.


Subject(s)
Rural Population , Urban Population , Humans , Brazil , Aged , Male , Female , Middle Aged , Aged, 80 and over , Stakeholder Participation , Health Priorities , Healthy Aging , Health Services Needs and Demand
10.
PLoS One ; 19(5): e0301370, 2024.
Article in English | MEDLINE | ID: mdl-38709752

ABSTRACT

Occupational injuries in the construction industry have plagued many countries, and many cases have shown that accidents often occur because of a combination of project participants. Assembled construction (AC) projects have received extensive attention from Chinese scholars as a future trend, but few studies have explored the interrelationships and potential risks of various stakeholders in depth. This study fills this research gap by proposing a multi-stakeholder AC risk framework. The study surveyed 396 stakeholders, then analyzed the collected data and created a risk framework based on Structural Equation Modelling (SEM) and the CRITIC weighting method. The results revealed that factors like "regular supervision is a formality," "blindly approving the wrong safety measures," and "failure to organize effective safety education and training." are vital risks in AC of China. Finally, the study validates the risk factors and the framework with 180 real-life cases, which shows that the proposed framework is theoretically grounded and realistic. The study also suggests multi-level strategies such as introducing AI-based automated risk monitoring, improving the adaptability of normative provisions to technological advances, and advancing the culture of project communities of interest to ensure AC's safe practices.


Subject(s)
Construction Industry , Humans , China , Accidents, Occupational/prevention & control , Stakeholder Participation , Risk Factors , Latent Class Analysis , Occupational Injuries/prevention & control , Occupational Injuries/epidemiology , Risk Assessment/methods , Surveys and Questionnaires
11.
BMC Prim Care ; 25(1): 152, 2024 May 06.
Article in English | MEDLINE | ID: mdl-38711025

ABSTRACT

BACKGROUND: Action on the social determinants of health is important to strengthen primary health care and promote access among underserved populations. We report on findings from stakeholder consultations undertaken at one of the Canadian sites of the Innovative Models Promoting Access-to-Care Transformation (IMPACT) program, as part of the development of a best practice intervention to improve access to primary health care. The overarching objective of this qualitative study was to understand the processes, barriers, and facilitators to connect patients to health enabling community resources (HERs) to inform a patient navigation model situated in primary care. METHODS: Focus groups and interviews were conducted with primary care physicians, and community health and social service providers to understand their experiences in supporting patients in reaching HERs. Current gaps in access to primary health care and the potential of patient navigation were also explored. We applied Levesque et al., (2013) access framework to code the data and four themes emerged: (1) Approachability and Ability to Perceive, (2) Acceptability and Ability to Seek, (3) Availability and Accommodation, and Ability to Reach, and (4) Appropriateness. RESULTS: Determinants of access included patient and provider awareness of HERs, the nature of the patient-provider relationship, funding of HERs, integration of primary and community care services, and continuity of information. Participants' perspectives about the potential scope and role of a patient navigator provided valuable insight for the development of the Access to Resources in the Community (ARC) navigation model and how it could be embedded in a primary care setting. CONCLUSION: Additional consultation with key stakeholders in the health region is needed to gain a broader understanding of the challenges in caring for primary care patients with social barriers and how to support them in accessing community-based primary health care to inform the design of the ARC intervention.


Subject(s)
Focus Groups , Health Services Accessibility , Physicians, Primary Care , Primary Health Care , Qualitative Research , Humans , Health Services Accessibility/organization & administration , Primary Health Care/organization & administration , Physicians, Primary Care/psychology , Canada , Male , Female , Stakeholder Participation , Patient Navigation/organization & administration , Community Health Services/organization & administration , Attitude of Health Personnel
12.
J Perinat Neonatal Nurs ; 38(2): 221-220, 2024.
Article in English | MEDLINE | ID: mdl-38758276

ABSTRACT

BACKGROUND: The COVID-19 pandemic impacted healthcare systems, including resuscitation training programs such as Helping Babies Breathe (HBB). Nepal, a country with limited healthcare resources, faces challenges in delivering effective HBB training, managing deliveries, and providing neonatal care, particularly in remote areas. AIMS: This study assessed HBB skills and knowledge postpandemic through interviews with key stakeholders in Nepal. It aimed to identify strategies, adaptations, and innovations to address training gaps and scale-up HBB. METHODS: A qualitative approach was used, employing semistructured interviews about HBB program effectiveness, pandemic challenges, stakeholder engagement, and suggestions for improvement. RESULTS: The study encompassed interviews with 23 participants, including HBB trainers, birth attendants, officials, and providers. Thematic analysis employed a systematic approach by deducing themes from study aims and theory. Data underwent iterative coding and refinement to synthesize content yielding following 5 themes: (1) pandemic's impact on HBB training; (2) resource accessibility for training postpandemic; (3) reviving HBB training; (4) impacts on the neonatal workforce; and (5) elements influencing HBB training progress. CONCLUSION: Postpandemic, healthcare workers in Nepal encounter challenges accessing essential resources and delivering HBB training, especially in remote areas. Adequate budgeting and strong commitment from healthcare policy levels are essential to reduce neonatal mortality in the future.


Subject(s)
COVID-19 , Humans , Nepal/epidemiology , COVID-19/epidemiology , COVID-19/prevention & control , Infant, Newborn , Female , Qualitative Research , Resuscitation/education , SARS-CoV-2 , Health Personnel/education , Health Personnel/psychology , Pregnancy , Asphyxia Neonatorum/therapy , Asphyxia Neonatorum/prevention & control , Asphyxia Neonatorum/epidemiology , Stakeholder Participation , Pandemics , Program Evaluation , Male
13.
BMC Health Serv Res ; 24(1): 634, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38755604

ABSTRACT

BACKGROUND: Multisectoral collaboration is essential for advancing primary health care (PHC). In low- and middle-income countries (LMICs), limited institutional capacities, governance issues, and inadequate stakeholder engagement impede multisectoral collaboration. India faces similar challenges, especially at the meso-level (districts and subdistricts). Owing to its dependence on context, and insufficient evidence, understanding "How" to improve multisectoral collaboration remains challenging. This study aims to elicit specific recommendations to strengthen meso-level stewardship in India for multisectoral collaboration. The findings from this study may offer lessons for other LMICs. METHODS: Using purposive, maximum variation sampling, the study team conducted semi-structured interviews with 20 diverse participants, including policymakers, implementers, development agency representatives, and academics experienced in multisectoral initiatives. The interviews delved into participants' experiences, the current situation, enablers, and recommendations for enhancing stakeholder engagement and capacities at the meso-level for multisectoral collaboration. RESULTS: Context and power are critical elements to consider in fostering effective collaboration. Multisectoral collaboration was particularly successful in three distinct governance contexts: the social-democratic context as in Kerala, the social governance context in Chhattisgarh, and the public health governance context in Tamil Nadu. Adequate health system input and timely guidance instil confidence among local implementers to collaborate. While power plays a role through local leadership's influence in setting agendas, convening stakeholders, and ensuring accountability. To nurture transformative local leaders for collaboration, holistic, equity-driven, community-informed approaches are essential. The study participants proposed several concrete steps: at the state level, establish "central management units" for supervising local implementers and ensuring bottom-up feedback; at the district level, rationalise committees and assign deliverables to stakeholders; and at the block level, expand convergence structures and involve local self-governments. Development partners can support data-driven priority setting, but local implementers with contextual familiarity should develop decentralised plans collaboratively, articulating rationales, activities, and resources. Finally, innovative training programs are required at all levels, fostering humility, motivation, equity awareness, leadership, problem- solving, and data use proficiency. CONCLUSION: This study offers multiple solutions to enhance local implementers' engagement in multisectoral efforts, advocating for the development, piloting, and evaluation of innovative approaches such as the block convergence model, locally-led collaboration efforts, and novel training methods for local implementers.


Subject(s)
Primary Health Care , Qualitative Research , India , Primary Health Care/organization & administration , Humans , Stakeholder Participation , Interviews as Topic , Cooperative Behavior , Intersectoral Collaboration , Health Policy
14.
BMC Med Ethics ; 25(1): 54, 2024 May 14.
Article in English | MEDLINE | ID: mdl-38745276

ABSTRACT

BACKGROUND: A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case. METHODS: The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software. RESULTS: The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research. CONCLUSION: In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.


Subject(s)
AIDS Vaccines , Community-Based Participatory Research , HIV Infections , Negotiating , Qualitative Research , Humans , AIDS Vaccines/administration & dosage , HIV Infections/prevention & control , Tanzania , Clinical Trials as Topic , Focus Groups , Male , Female , Decision Making , Research Personnel , Stakeholder Participation , Developing Countries , Adult
15.
BMC Health Serv Res ; 24(1): 628, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38750447

ABSTRACT

BACKGROUND: In the quest for quality antenatal care (ANC) and positive pregnancy experience, the value of comprehensive woman hand-held case notes cannot be emphasised enough. However, the woman's health passport book in Malawi presents gaps which hinder provision of quality care, especially during pregnancy. We aimed to develop a compressive updated woman hand-held case notes tool (health passport book) which reflects WHO 2016 ANC guidelines in Malawi. METHODS: From July 2022 to August 2022, we applied a co-creative participatory approach in 3 workshops with key stakeholders to compare the current ANC tool contents to the WHO 2016 ANC guidelines, decide on key elements to be changed to improve adherence and change in practice, and redesign the woman's health passport tool to reflect the changes. Within-group discussions led to whole-group discussions and consensus, guided by a modified nominal group technique. Facilitators guided the discussions while ensuring autonomy of the group members in their deliberations. Discussions were recorded and transcribed. Data was analysed through thematic analysis, and reduction and summaries in affinity diagrams. The developed tool was endorsed for implementation within Malawi's healthcare system by the national safe motherhood technical working group (TWG) in July 2023. RESULTS: Five themes were identified in the analysis. These were (i) critical components in the current tool missed, (ii) reimagining the current ANC tool, (iii) opportunity for ultrasound scanning conduct and documentation, (iv) anticipated barriers related to implementation of the newly developed tool and (v) cultivating successful implementation. Participants further recommended strengthening of already existing policies and investments in health, strengthening public private partnerships, and continued capacity building of healthcare providers to ensure that their skill sets are up to date. CONCLUSION: Achieving goals of quality ANC and universality of healthcare are possible if tools in practice reflect the guidelines set out. Our efforts reflect a pioneering attempt in Malawi to improve women's hand-held case notes, which we know help in enhancing quality of care and improve overall women's satisfaction with their healthcare system.


Subject(s)
Prenatal Care , Humans , Malawi , Female , Prenatal Care/standards , Pregnancy , Quality Improvement , Poverty , Stakeholder Participation , Quality of Health Care , Adult , Maternal Health
16.
BMC Health Serv Res ; 24(1): 631, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38750498

ABSTRACT

BACKGROUND: Ensuring equal access to medicines and their appropriate and safe use at reasonable costs are core functions of health systems. Despite that, few descriptions of national medicines policies' development processes and implementation strategies have been published. This study aimed to describe the government program-based development of the Rational Pharmacotherapy Action Plan in Finland as a part of the undergoing major health and social service system reform, also covering the implementation of rational pharmacotherapy in the reformed system and processes. METHODS: The data of this qualitative study consisted of public reports and Steering Group meeting memos related to the development of the national Rational Pharmacotherapy Action Plan that the Ministry of Social Affairs and Health coordinated. Qualitative content analysis applying systems theory and the conceptual framework of integrated services as theoretical frameworks was used as an analysis method. RESULTS: The national Rational Pharmacotherapy Action Plan covering 2018-2022 was created in a bottom-up development process involving a wide range of stakeholders. Rational pharmacotherapy was redefined by adding equality as the fifth pillar to complement the previously defined pillars of being effective, safe, high-quality, and cost-effective. The Action Plan formed a normative framework for long-term development, with a vision and principles focusing on people-centeredness, better coordination and management of the medication use processes, the continuity of treatment paths and the flow of patient and medicines information through partnerships, and evidence-informed policies and practices. CONCLUSION: Through intensive stakeholder participation, the bottom-up approach created a national vision and principles of rational pharmacotherapy along with strong commitment to implementing the goals and measures. The concern lies in ensuring the continuity of the Action Plan implementation and achieving a balanced long-term development aligned with the integrated and reformed national social and health services system. The development of the pharmaceutical system has several national and EU-level dependencies requiring political long-term commitment. While the Action Plan differs from the national medicines policy, it forms a good basis for long-term development covering important parts of medicine policy at the micro, meso, and macro levels of the service system.


Subject(s)
Health Care Reform , Finland , Humans , Health Policy , Qualitative Research , Stakeholder Participation
17.
J Glob Health ; 14: 04082, 2024 May 17.
Article in English | MEDLINE | ID: mdl-38751308

ABSTRACT

Background: Despite a global decrease of 59% in under-five mortality rates from 1990 to 2021, child survival remains a pressing issue. This holds true for Bangladesh, as well. In response, the Government of Bangladesh introduced a standardised register for strengthening the inpatient management of newborns and sick children in 2021. Methods: We employed a comprehensive four-phase stakeholder engagement process to implement an inpatient register for newborns and sick children. The first stage included identifying and prioritising potential stakeholders at the national and district levels. We identified eight organisations involved in newborn and child health and selected 24 participants from various other sectors for workshops aimed at raising awareness about the register's introduction. These stakeholders also participated in the register's design, development strategies planning, and implementation phases. These phases were led by the 'National Newborn Health and IMCI programme' with support from various partners. A technical working group reviewed existing registers and helped prepare training materials. Feedback from each workshop was crucial in finalising the register. Results: The Government of Bangladesh has recognised the need for an indoor register for newborns and sick children, which was to be established in collaboration with development partners. This initiative can enhance the quality of care for sick children and increase service provider accountability. Due to its successful implementation, it will continue to be used in the Kushtia and Dinajpur districts, with plans for a nationwide scale-up. The Government has allocated funds in the next health sector programme for orientation and register printing. A strengths, weaknesses, opportunities, and threats (SWOT) analysis of the stakeholder engagement process highlighted strengths such as a context-specific approach and collaborative engagement, as well as challenges such as time resource requirements. Conclusions: Implementing an inpatient register for newborns and sick children through stakeholder engagement can effectively improve child health care services. Aside from challenges such as resource intensiveness and stakeholder commitments, success depended on the organising authority's expertise in relationship building, budget allocation, time management, and workforce dedication. Therefore, strategic planning, staff recruitment, networking, and budgeting are crucial for successful stakeholder engagement and health care initiatives.


Subject(s)
Registries , Stakeholder Participation , Humans , Bangladesh , Infant, Newborn , Infant , Child, Preschool , Quality Improvement , Hospitalization
18.
JMIR Res Protoc ; 13: e54933, 2024 May 22.
Article in English | MEDLINE | ID: mdl-38776540

ABSTRACT

BACKGROUND: There is data paucity regarding users' awareness of privacy concerns and the resulting impact on the acceptance of mobile health (mHealth) apps, especially in the Saudi context. Such information is pertinent in addressing users' needs in the Kingdom of Saudi Arabia (KSA). OBJECTIVE: This article presents a study protocol for a mixed method study to assess the perspectives of patients and stakeholders regarding the privacy, security, and confidentiality of data collected via mHealth apps in the KSA and the factors affecting the adoption of mHealth apps. METHODS: A mixed method study design will be used. In the quantitative phase, patients and end users of mHealth apps will be randomly recruited from various provinces in Saudi Arabia with a high population of mHealth users. The research instrument will be developed based on the emerging themes and findings from the interview conducted among stakeholders, app developers, health care professionals, and users of mHealth apps (n=25). The survey will focus on (1) how to improve patients' awareness of data security, privacy, and confidentiality; (2) feedback on the current mHealth apps in terms of data security, privacy, and confidentiality; and (3) the features that might improve data security, privacy, and confidentiality of mHealth apps. Meanwhile, specific sections of the questionnaire will focus on patients' awareness, privacy concerns, confidentiality concerns, security concerns, perceived usefulness, perceived ease of use, and behavioral intention. Qualitative data will be analyzed thematically using NVivo version 12. Descriptive statistics, regression analysis, and structural equation modeling will be performed using SPSS and partial least squares structural equation modeling. RESULTS: The ethical approval for this research has been obtained from the Biomedical and Scientific Research Ethics Committee, University of Warwick, and the Medical Research and Ethics Committee Ministry of Health in the KSA. The qualitative phase is ongoing and 15 participants have been interviewed. The interviews for the remaining 10 participants will be completed by November 25, 2023. Preliminary thematic analysis is still ongoing. Meanwhile, the quantitative phase will commence by December 10, 2023, with 150 participants providing signed and informed consent to participate in the study. CONCLUSIONS: The mixed methods study will elucidate the antecedents of patients' awareness and concerns regarding the privacy, security, and confidentiality of data collected via mHealth apps in the KSA. Furthermore, pertinent findings on the perspectives of stakeholders and health care professionals toward the aforementioned issues will be gleaned. The results will assist policy makers in developing strategies to improve Saudi users'/patients' adoption of mHealth apps and addressing the concerns raised to benefit significantly from these advanced health care modalities. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54933.


Subject(s)
Computer Security , Confidentiality , Mobile Applications , Telemedicine , Humans , Saudi Arabia , Surveys and Questionnaires , Male , Female , Privacy , Adult , Qualitative Research , Stakeholder Participation
19.
JCO Glob Oncol ; 10: e2300256, 2024 May.
Article in English | MEDLINE | ID: mdl-38781548

ABSTRACT

PURPOSE: There is an urgent need to improve access to cancer therapy globally. Several independent initiatives have been undertaken to improve access to cancer medicines, and additional new initiatives are in development. Improved sharing of experiences and increased collaboration are needed to achieve substantial improvements in global access to essential oncology medicines. METHODS: The inaugural Access to Essential Cancer Medicines Stakeholder Meeting was organized by ASCO and convened at the June 2022 ASCO Annual Meeting in Chicago, IL, with two subsequent meetings, Union for International Cancer Control World Cancer Congress held in Geneva, Switzerland, in October 2022 and at the ASCO Annual Meeting in June of 2023. Invited stakeholders included representatives from cancer institutes, physicians, researchers, professional societies, the pharmaceutical industry, patient advocacy organizations, funders, cancer organizations and foundations, policy makers, and regulatory bodies. The session was moderated by ASCO. Past efforts and current and upcoming initiatives were initially discussed (2022), updates on progress were provided (2023), and broad agreement on resulting action steps was achieved with participants. RESULTS: Summit participants recognized that while much work was ongoing to enhance access to cancer therapeutics globally, communication and synergy across projects and organizations could be enhanced by providing a platform for collaboration and shared expertise. CONCLUSION: The summit resulted in new cross-stakeholder insights and planned collaboration addressing barriers to accessing cancer medications. Specific actions and timelines for implementation and reporting were established.


Subject(s)
Global Health , Health Services Accessibility , Neoplasms , Humans , Health Services Accessibility/organization & administration , Neoplasms/drug therapy , Antineoplastic Agents/therapeutic use , Antineoplastic Agents/supply & distribution , Stakeholder Participation , Drugs, Essential/supply & distribution
20.
Stud Health Technol Inform ; 314: 173-177, 2024 May 23.
Article in English | MEDLINE | ID: mdl-38785026

ABSTRACT

In healthcare, there are various stakeholders who hold different understandings of technology. Cybersecurity risks may also be something these stakeholder have varying perceptions of. This papers explores how cybersecurity risks are understood by two key stakeholder groups in the Norwegian healthcare sector related to welfare technology and personal healthcare devices. Two stakeholder groups (healthcare workers and technology vendors) have been interviewed to gather data on this topic. Key findings highlight that there are differences in how risks are perceived, both in terms of likelihood and in consequence. We apply risk perception theory to analyze these findings and provide suggestions for further research within this topic.


Subject(s)
Computer Security , Norway , Humans , Telemedicine , Attitude of Health Personnel , Stakeholder Participation
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