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BACKGROUND: The healthcare system is under tremendous pressure. One possible solution towards relieving some of this pressure is to use Positive Health, which takes 'health' as a starting point, rather than 'illness'. Positive Health provides opportunities for stimulating integrated care. METHODS: Three cases in the Netherlands are studied in this paper. Their way of working with Positive Health is investigated through semi-structured and narrative interviews, using realist-evaluation and thematic analyses. RESULTS: Seven 'working elements' are identified that enhance the chances of successfully implementing Positive Health in practice (part 1). The interviews show that healthcare professionals have noticed that people adopt a healthier lifestyle and gain a greater degree of control over their own health. This boosts job satisfaction for healthcare professionals too. The organisations and professionals involved are enthusiastic about working with Positive Health, but still experience barriers (part 2). CONCLUSIONS: The results of this study imply that implementing Positive Health in practice can facilitate collaboration between organisations and professionals from different disciplines, such as healthcare, welfare, and municipal health services. Operating from the perspective of a shared goal, professionals from different disciplines will find it easier to jointly organise activities to foster citizens' health. Additionally, more attention is paid to non-medical problems affecting people's well-being, such as loneliness or financial problems.
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Interviews as Topic , Netherlands , Humans , Qualitative Research , Female , Health Promotion/methods , Health Promotion/organization & administration , Male , Delivery of Health Care, Integrated/organization & administration , Organizational Case Studies , Job Satisfaction , Delivery of Health Care/organization & administrationABSTRACT
Intersectoral collaborations are recommended as effective strategies to reduce health inequalities. People most affected by health inequalities, as are people living in poverty, remain generally absent from such intersectoral collaborations. Community-based participatory research (CBPR) projects can be leveraged to better understand how to involve people with lived experience to support both individual and community empowerment. In this paper, we offer a critical reflection on a CBPR project conducted in public housing in Québec, Canada, that aimed to develop intersectoral collaboration between tenants and senior executives from four sectors (housing, health, city and community organizations). This single qualitative case study design consisted of fieldwork documents, observations and semi-structured interviews. Using the Emancipatory Power Framework (EPF) and the Limiting Power Framework (LPF), we describe examples of types of power and resistance shown by the tenants, the intersectoral partners and the research team. The discussion presents lessons learned through the study, including the importance for research teams to reflect on their own power, especially when aiming to reduce health inequalities. The paper concludes by describing the limitations of the analyses conducted through the EPF-LPF frameworks and suggestions to increase the transformative power of future studies.
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Community-Based Participatory Research , Public Housing , Qualitative Research , Humans , Quebec , Intersectoral Collaboration , Health Status Disparities , Empowerment , Power, Psychological , Interviews as TopicABSTRACT
Paediatric radiology is a challenging and intriguing subspecialty, dealing with children, guardians and non-radiological clinical colleagues. Paediatric radiologists are routinely in contact with numerous paediatric and surgical subspecialties, all having different needs, perceptions, prioritisations and expectations. Moreover, the radiologist is part of the team of radiographers, sonographers, nurses and secretaries, assisted by appropriate equipment and electronic tools. The framework of good collaboration to ensure safety and effectiveness for the imaged child is a shared responsibility among all medical practitioners involved. Communication in routine practice has many forms and includes appropriately filled radiology requests in accordance to the patient's medical records, routine and timely production of structured, problem-solving radiology reports, face-to-face or electronic-assisted communications and discussions on a pre-defined framework, mutually-agreed and evidence-based protocols adjusted to local availability, skills and national and international guidelines. Mutual understanding of advantages and limitations of imaging is paramount. Well-meant discussions, professionalism and empathy should promote soft skills, bidirectional communication and good collaboration for the benefit of added-value paediatric radiology. International societies, health authorities, medical directors and senior consultants have the responsibility to suggest and safeguard frameworks and recommendations. Regular multidisciplinary meetings and multidisciplinary research projects under openness, honesty and transparency are pathways favouring good collaboration.
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The COVID-19 pandemic undeniably impacted population health and several aspects of community organization, including service delivery and social cohesion. Intersectoral collaboration and equity, two key dimensions of community resilience, proved central to an effective and equitable response to the pandemic. Yet the factors that enabled or constrained communities' capacity to enact intersectoral collaboration and equity-focused action in such times of urgency and uncertainty remain poorly understood. This descriptive qualitative study aimed to (1) describe the processes through which intersectoral collaboration and equity-focused action were deployed during the first wave of COVID-19 and (2) identify factors enabling and constraining these processes. We conducted semi-directed interviews with 35 representatives of the governmental, institutional, and public and third sectors from four municipal regional counties of the Estrie region (Québec, Canada). We coded detailed interview notes following a codebook thematic analysis approach. We identified three processes through which intersectoral collaboration and equity-focused action were deployed: (1) networking; (2) adaptation, creation and innovation; and (3) human-centred action. Examples of levers which supported the deployment of these processes included capitalizing on pre-existing networks, adapting practices and services, and investing in solidarity and mutual aid. The influencing factors we describe represent concrete targets for resilience-building action. Although focused on the COVID-19 pandemic, our findings are relevant to other types of health, social, environmental or economic crises, and may guide health promotion and community development practitioners towards more effective community resilience-building responses.
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COVID-19 , Qualitative Research , Resilience, Psychological , SARS-CoV-2 , COVID-19/epidemiology , Humans , Intersectoral Collaboration , Interviews as Topic , Pandemics , CanadaABSTRACT
INTRODUCTION: Headache disorders are the largest contributor to all years lived with disability attributed to neurological disorders. In sub-Saharan Africa (SSA), with 1.2 billion inhabitants, headache prevalence is similar to that of Western countries but with widely inadequate access to care. Cost of transport to healthcare facilities hampers access to care, leading to abandonment and low retention. The aim of this observational study in Malawi was to investigate cost of transport and its likely impact on implementation of WHO's-Intersectoral Global Action Plan (IGAP) in an HIV+ population also complaining of, and requiring treatment for, an active headache disorder. METHODS: The study was conducted at the Disease Relief through Excellent and Advanced Means (DREAM) centre in Blantyre, Malawi, in collaboration with the Global Campaign against Headache as an extension of a previous study. Enquiries about distance and costs of travel were added to the previously published questionnaire. RESULTS: We included 495 consecutive HIV+ patients aged 6-65 years who had been followed for at least 1 year. One-year prevalence of any headache was 76.6%; 28.7% missed at least one appointment because of transport costs. Higher costs of transport were associated with higher probability of missing visits (p < 0.001), while costs were higher for those living in rural areas than for those in urban (p < 0.001). CONCLUSIONS: Awareness of cost and affordability of transport in SSA may suggest strategies to improve access to headache care. Given the disability attributable to headache, this is necessary if the IGAP strategic objectives and targets are to be achieved.
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Health Services Accessibility , Humans , Male , Female , Adult , Adolescent , Middle Aged , Health Services Accessibility/economics , Health Services Accessibility/statistics & numerical data , Child , Young Adult , Aged , Headache/therapy , Headache/epidemiology , Headache/economics , HIV Infections/epidemiology , HIV Infections/economics , Africa South of the Sahara/epidemiology , Malawi/epidemiology , Prevalence , Transportation/economicsABSTRACT
BACKGROUND: The interdependent and intersecting nature of the Sustainable Development Goals (SDGs) require collaboration across government sectors, and it is likely that departments with few past interactions will find themselves engaged in joint missions on SDG projects. Intersectoral action (IA) is becoming a common framework for different sectors to work together. Understanding the factors in the environment external to policy teams enacting IA is crucial for making progress on the SDGs. METHODS: Interviews [n=17] with senior public servants leading SDG work in nine departments in the federal government of Canada were conducted to elicit information about issues affecting how departments engage in IA for the SDGs. Transcripts were coded based on a set of factors identified in a background review of 20 documents related to Canada's progress on SDGs. Iterative group thematic analysis by the authors illuminated a set of domestic and global contextual factors affecting IA processes for the SDGs. RESULTS: The mechanisms for successful IA were identified as facilitative governance, leadership by a central coordinating office, supportive staff, flexible and clear reporting structures, adequate resources, and targeted skills development focused on collaboration and cross-sector learning. Factors that affect IA positively include alignment of the SDG agenda with domestic and global political priorities, and the co-occurrence of social issues such as Indigenous rights and gender equity that raise awareness of and support for related SDGs. Factors that affect IA negatively include competing conceptual frameworks for approaching shared priorities, lack of capacity for "big picture" thinking among bureaucratic staff, and global disruptions that shift national priorities away from the SDGs. CONCLUSION: IA is becoming a normal way of working on problems that cross otherwise separate government accountabilities. The success of these collaborations can be impacted by contextual factors beyond any one department's control.
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Leadership , Sustainable Development , Canada , Humans , Federal Government , Intersectoral Collaboration , Administrative PersonnelABSTRACT
The attainment of the noble objective of Universal Health Coverage (UHC)- 'leaving no one behind' necessitates sufficient financial resources, an ample supply of skilled healthcare professionals, and the availability of essential services as part of a basic package This paper presents an analysis of the health system, health seeking behaviours and health service utilization en route to UHC in Pakistan. We have used the UHC 14 tracer indicators of service coverage to see where Pakistan stands, what are the gaps and what needs to be done. Pakistan clearly is lagging behind its neighboring countries. The country's health system ought to work on health seeking behaviours and broader determinants of health. The pursuit of UHC demands a shared responsibility and collective action, with stakeholders from different sectors uniting their efforts and expertise. Together, they can establish robust systems, design comprehensive policies, allocate adequate resources, and implement interventions that transcend disciplinary boundaries.
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Introduction: Western Australia has one of the highest rates of Aboriginal children entering out-of-home care in Australia. Kinship care is the preferred culturally safe out-of-home care option for Aboriginal children, yet all jurisdictions, including Western Australia, are far from meeting best-practice national standards. Intersectoral collaboration is a key primary healthcare principle and internationally recognized for improving health systems and outcomes. This paper presents findings from a qualitative research project investigating Aboriginal primary healthcare workers' experiences of intersectoral collaboration challenges and strengthening opportunities. Methods: Constructivist grounded theory guided this research involving 55 semi-structured interviews and four focus group discussions with Aboriginal primary healthcare workers. The research was guided by Indigenous methodologies and led by Indigenous researchers Participants were recruited from seven Aboriginal Community Controlled Health Organisations located across Perth metro, Pilbara, Midwest/Gascoyne and Southwest regions in Western Australia. Results: Key themes identified around intersectoral collaboration challenges were communication, including information sharing and interagency meetings, and the relationship with the government sector, including trust and the importance of the perception of Aboriginal health service independence. Key themes around strengthening areas to improve intersectoral collaboration included strengthening service resourcing and coverage, including the availability of services, and addressing high program turnover. The need for a shift in approach, including more emphasis on Aboriginal-led care and aligning approaches between sectors, was another area for strengthening. Discussion: This study addresses a significant research gap concerning out-of-home care, kinship care, and intersectoral collaboration in an Australian Aboriginal context. Findings highlighted the need to review the out-of-home and kinship models of care to strengthen the system, including creating more formal and structured modes of collaborating and better resourcing family support and kinship care.
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Health Services, Indigenous , Intersectoral Collaboration , Qualitative Research , Child , Female , Humans , Male , Focus Groups , Foster Home Care , Grounded Theory , Health Services, Indigenous/organization & administration , Interviews as Topic , Western Australia , Australian Aboriginal and Torres Strait Islander PeoplesABSTRACT
Establishing a robust One Health (OH) governance is essential for ensuring effective coordination and collaboration among human, animal, and environmental health sectors to prevent and address complex health challenges like zoonoses or antimicrobial resistance. This study conducted a mixed-methods environmental scan to assess to what extent Mexico displays a OH governance and identify opportunities for improvement. Through documentary analysis, the study mapped OH national-level governance elements: infrastructure, multi-level regulations, leadership, multi-coordination mechanisms (MCMs), and financial and OH-trained human resources. Key informant interviews provided insights into enablers, barriers, and recommendations to enhance a OH governance. Findings reveal that Mexico has sector-specific governance elements: institutions, surveillance systems and laboratories, laws, and policies. However, the absence of a OH governmental body poses a challenge. Identified barriers include implementation challenges, non-harmonised legal frameworks, and limited intersectoral information exchange. Enablers include formal and ad hoc MCMs, OH-oriented policies, and educational initiatives. Like other middle-income countries in the region, institutionalising a OH governance in Mexico, may require a OH-specific framework and governing body, infrastructure rearrangements, and policy harmonisation. Strengthening coordination mechanisms, training OH professionals, and ensuring data-sharing surveillance systems are essential steps toward successful implementation, with adequate funding being a relevant factor.
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One Health , Mexico , Humans , Interviews as Topic , Health Policy , AnimalsABSTRACT
Introduction: The COVID-19 pandemic disproportionally impacted people experiencing homelessness, including people sleeping rough, people in temporary accommodation and those living in boarding houses. This paper reports on intersectoral responses across six health and social care agencies in Inner Sydney, New South Wales, Australia. Prior to the pandemic the six agencies had established an Intersectoral Homelessness Health Strategy (IHHS), in recognition of the need for intersectoral collaboration to address the complex health needs of people experiencing homelessness. Description: The governance structure of the IHHS provided a platform for several innovative intersectoral responses to the pandemic. A realist informed framework was used to select, describe, and analyse case studies of intersectoral collaboration. Discussion: The resultant six critical success factors (trust, shared ways of working, agile collaboration, communication mechanisms, authorising environment, and sustained momentum), align with the existing literature that explores effective intersectoral collaboration in complex health or social care settings. This paper goes further by describing intersectoral collaboration 'in action', setting a strong foundation for future collaborative initiatives. Conclusion: While there is no single right approach to undertaking intersectoral collaboration, which is highly context specific, the six critical success factors identified could be applied to other health issues where dynamic collaboration and integration of healthcare is needed.
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BACKGROUND: There is a growing interest in the use of intersectoral collaborative (ISC) approaches to address complex health-related issues. However, relatively little empirical research exists on the challenges of implementing, fostering and sustaining these approaches. Our study explores the perceptions and experiences of programme implementers regarding the implementation of an ISC approach, focusing on a case study of nutrition programming in Assam, India. METHODS: We conducted qualitative semi-structured face-to-face in-depth interviews with eleven programme implementers from two selected districts of Assam, India. These participants were purposefully sampled to provide a comprehensive understanding of the experiences of implementing intersectoral collaboration. Following the interviews, an inductive thematic analysis was performed on the collected data. RESULTS: The study identified three main themes: operationalisation of ISC in daily practice, facilitators of ISC, and barriers to effective ISC. These were further broken down into six subthemes: defined sectoral mandates, leadership dynamics, interpersonal relationships and engagement, collective vision and oversight, resource allocation, and power dynamics. These findings highlight the complexity of ISC, focusing on the important structural and relational aspects at the macro, meso, and micro levels. Interpersonal relationships and power dynamics among stakeholders substantially influenced ISC formation in both the districts. CONCLUSION: Despite challenges, there is ongoing interest in establishing ISC in nutrition programming, supported by political development agendas. Success relies on clarifying sectoral roles, addressing power dynamics, and engaging stakeholders systematically. Actionable plans with measurable targets are crucial for promoting and sustaining ISC, ensuring positive programme outcomes. The insights from our study provide valuable guidance for global health practitioners and policymakers dealing with similar challenges, emphasising the urgent need for comprehensive research given the lack of universally recognised policies in the realm of ISC in global health practice.
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BACKGROUND: Shortage in nursing resource results from the combination of a lack of nurses, an increased patient volume and workload, and other factors. This seems to be a worldwide phenomenon, leading to multiple health care related challenges and a decreased quality of care, but is different in extent in high- vs. low-income countries. An international perspective can alleviate challenges to keep our patients safe through increasing our health workers' safety. PURPOSE & METHOD: To exchange experiences with the shortage in nursing resource globally, an international online conference event was hosted. Speakers from Germany, the Philippines, Poland, Tanzania, the United Kingdom and the United States presented their national challenges and strategies to deal with this phenomenon. RESULTS: Conference presentations included information about the health care systems, comparable numbers of hospital beds, nurses, and nursing education. Speakers reported challenges such as an imbalance between a high nurse vacancy rate and demands, but also war and refugees, high human immunodeficiency virus (HIV) and other infection rates, or nurses' migration to other countries; the solutions reported included buy-in from other countries, nurses-attracting projects such as Magnet hospitals, improved job opportunities like higher wages, career prospects, or improved education, and others. CONCLUSIONS: Shortage in nursing resource seems to be a global phenomenon. Nursing managers and researchers should exchange and communicate challenges and solutions continuously and cooperate globally.
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Developing Countries , Humans , Germany , Philippines , United States , United Kingdom , Tanzania , Cross-Cultural Comparison , Emigration and Immigration/statistics & numerical data , Workload , Education, Nursing/organization & administration , Health Services Needs and Demand/organization & administration , Refugees/statistics & numerical dataABSTRACT
PURPOSE: Providing patient access to precision oncology (PO) is a major challenge of clinical oncologists. Here, we provide an easily transferable model from strategic management science to assess the outreach of a cancer center. METHODS: As members of the German WERA alliance, the cancer centers in Würzburg, Erlangen, Regensburg and Augsburg merged care data regarding their geographical impact. Specifically, we examined the provenance of patients from WERA´s molecular tumor boards (MTBs) between 2020 and 2022 (n = 2243). As second dimension, we added the provenance of patients receiving general cancer care by WERA. Clustering our catchment area along these two dimensions set up a four-quadrant matrix consisting of postal code areas with referrals towards WERA. These areas were re-identified on a map of the Federal State of Bavaria. RESULTS: The WERA matrix overlooked an active screening area of 821 postal code areas - representing about 50 % of Bavaria´s spatial expansion and more than six million inhabitants. The WERA matrix identified regions successfully connected to our outreach structures in terms of subsidiarity - with general cancer care mainly performed locally but PO performed in collaboration with WERA. We also detected postal code areas with a potential PO backlog - characterized by high levels of cancer care performed by WERA and low levels or no MTB representation. CONCLUSIONS: The WERA matrix provided a transparent portfolio of postal code areas, which helped assessing the geographical impact of our PO program. We believe that its intuitive principle can easily be transferred to other cancer centers.
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Health Services Accessibility , Medical Oncology , Neoplasms , Precision Medicine , Humans , Germany , Health Services Accessibility/organization & administration , Neoplasms/therapy , Medical Oncology/organization & administration , Cancer Care Facilities/organization & administration , Rural PopulationABSTRACT
Alcohol harms threaten global population health, with youth particularly vulnerable. Low - and middle-income countries (LMIC) are increasingly targeted by the alcohol industry. Intersectoral and whole-of-community actions are recommended to combat alcohol harms, but there is insufficient global evidence synthesis and research examining interventions in LMIC. This paper maps existing literature on whole-of - community and intersectoral alcohol harms reduction interventions in high-income countries (HIC) and LMIC. Systematic searching and screening produced 61 articles from an initial set of 1325: HIC (n = 53), LMIC (n = 8). Data were extracted on geographic location, intersectoral action, reported outcomes, barriers, and enablers. HIC interventions most often targeted adolescents and combined community action with other components. LMIC interventions did not target adolescents or use policy, schools, alcohol outlets, or enforcement components. Programme enablers were a clear intervention focus with high political support and local level leadership, locally appropriate plans, high community motivation, community action and specific strategies for parents. Challenges were sustainability, complexity of interventions, managing participant expectations and difficulty engaging multiple sectors. A learning agenda to pilot, scale and sustain whole-of-community approaches to address alcohol harms in settings is crucial, with consideration of local contexts and capacities, more standardised methods, and a focus on community-driven action.
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Harm Reduction , Humans , Developing Countries , Adolescent , Alcohol Drinking/prevention & controlABSTRACT
BACKGROUND: Geriatric patients after hospitalization often utilize subacute inpatient care (SC); however, little is known about their care and further health status. OBJECTIVE: To identify persons in SC with rehabilitation needs and improvement potential after hospitalization and to describe the care, relevant parameters of the health status as well as use of medical/nursing services in and after SC. METHODS: After positive screening for previous hospitalization and need of rehabilitation with improvement potential in 13 nursing homes, the length of stay, therapeutic treatments and physician contacts in SC as well as functional parameters, pain, quality of life and the utilization of services according to the Social Security Code V (SGB V) and SGB XI were assessed at baseline, at the end and 3 months after SC. RESULTS: A total of 108 (44%) out of 243 screened persons with previous hospitalization had a need of rehabilitation with improvement potential, of whom 57 participated in the study. In SC (medianâ¯= 26 days) 35% received no therapeutic treatments and 28% had no physician contact. After SC 40% were transferred to rehabilitation. Participants with rehabilitation transition more frequently received therapeutic treatments in SC (pâ¯= 0.021) and were less frequently in long-term care 3 months after SC (pâ¯= 0.015). CONCLUSION: This study suggests that a high proportion of persons in SC after hospitalization are in need of rehabilitation with improvement potential, which is not sufficiently treated. Regular therapeutic treatments in SC could improve the transition rate to rehabilitation and subsequent home environment.
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Introduction: Obtaining real-world data from routine clinical care is of growing interest for scientific research and personalized medicine. Despite the abundance of medical data across various facilities - including hospitals, outpatient clinics, and physician practices - the intersectoral exchange of information remains largely hindered due to differences in data structure, content, and adherence to data protection regulations. In response to this challenge, the Medical Informatics Initiative (MII) was launched in Germany, focusing initially on university hospitals to foster the exchange and utilization of real-world data through the development of standardized methods and tools, including the creation of a common core dataset. Our aim, as part of the Medical Informatics Research Hub in Saxony (MiHUBx), is to extend the MII concepts to non-university healthcare providers in a more seamless manner to enable the exchange of real-world data among intersectoral medical sites. Methods: We investigated what services are needed to facilitate the provision of harmonized real-world data for cross-site research. On this basis, we designed a Service Platform Prototype that hosts services for data harmonization, adhering to the globally recognized Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR) international standard communication format and the Observational Medical Outcomes Partnership (OMOP) common data model (CDM). Leveraging these standards, we implemented additional services facilitating data utilization, exchange and analysis. Throughout the development phase, we collaborated with an interdisciplinary team of experts from the fields of system administration, software engineering and technology acceptance to ensure that the solution is sustainable and reusable in the long term. Results: We have developed the pre-built packages "ResearchData-to-FHIR," "FHIR-to-OMOP," and "Addons," which provide the services for data harmonization and provision of project-related real-world data in both the FHIR MII Core dataset format (CDS) and the OMOP CDM format as well as utilization and a Service Platform Prototype to streamline data management and use. Conclusion: Our development shows a possible approach to extend the MII concepts to non-university healthcare providers to enable cross-site research on real-world data. Our Service Platform Prototype can thus pave the way for intersectoral data sharing, federated analysis, and provision of SMART-on-FHIR applications to support clinical decision making.
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Background: Multisectoral collaboration is crucial in effectively managing public health emergencies. The One Health approach, which emphasizes the interconnectedness of human, animal, and environmental health, has gained recognition as an effective strategy. This study analysis the factors influencing the implementation of the One Health approach in Cameroon and examines its effects on public health emergency management. Method: A survey was conducted among 44 stakeholders from key sectors involved in implementing the "One Health approach" in Cameroon. Data were collected with a structured questionnaire using a self-administered approach. Statistical analysis using the Ki Square test was conducted to identify associations between variables. Results: The findings revealed that stakeholders in Cameroon lacked prior training on the One Health approach, primarily due to its absence in their academic programs. However, ad hoc trainings during public health emergencies were effective in involving various sectors. Limited communication and collaboration between different sectors, often operating in silos, posed significant challenges. Stakeholders with previous collaborative experiences and existing relationships demonstrated a greater propensity for multisectoral collaboration. The involvement of environmental health professionals in collaboration activities was limited, highlighting the need for improved engagement. Strong leadership, supported by coordination structures and platforms, played a critical role in facilitating collaboration during public health emergencies. Communication channels, such as regular multisectoral meetings, were essential in fostering relationships and trust among stakeholders. However, financial constraints hindered cross-sector cooperation. Conclusion: To enhance multisectoral collaboration in public health emergency management, there is a need to prioritize training on the One Health approach and promote cross-sector communication and collaboration. Strengthening coordination structures and platforms, improving resource allocation, and fostering a culture of accountability and trust are crucial for effective implementation. This study provides insights into the challenges and opportunities in implementing the One Health approach in Cameroon and offers valuable lessons for other countries seeking to enhance their multisectoral response to public health emergencies.
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BACKGROUND: Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients' and caregivers' general experience of healthcare, (2) to analyse patients' and caregivers' perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients' and caregivers' satisfaction with healthcare in the expert centers for rare diseases. RESULTS: In total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs. CONCLUSIONS: Our findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.
Subject(s)
Rare Diseases , Humans , Rare Diseases/therapy , Germany , Male , Female , Surveys and Questionnaires , Adult , Middle Aged , Intersectoral Collaboration , Health Personnel/psychology , Delivery of Health Care , Communication , Patient Satisfaction , Young Adult , Caregivers/psychologyABSTRACT
Background: Due to the globally increasing demand for care, innovation is important to maintain quality, safety, effectiveness, patient sensitivity, and outcome orientation. Health care technologies could be a solution to innovate, maintain, or improve the quality of care and simultaneously decrease nurses' workload. Currently, nurses are rarely involved in the design of health care technologies, mostly due to time constraints with clinical nursing responsibilities and limited exposure to technology and design disciplines. To ensure that health care technologies fit into nurses' core and routine practice, nurses should be actively involved in the design process. Objective: The aim of the present study was to explore the main requirements for nurses' active participation in the design of health care technologies. Design: An exploratory descriptive qualitative design was used which helps to both understand and describe a phenomenon. Participants: Twelve nurses from three academic hospitals in the Netherlands participated in this study. Method: Data were collected from semistructured interviews with hospital nurses experienced in design programs and thematically analysed. Results: Four themes were identified concerning the main requirements for nurses to participate in the design of health care technologies: (1) nurses' motivations to participate, (2) the process of technology development, (3) required competence to participate (such as assertiveness, creative thinking, problem solving skills), and (4) facilitating and organizing nurses' participation. Conclusion: Nurses experience their involvement in the design process as essential, distinctive, and meaningful but experience few possibilities to combine this work with their current workload, flows, routines, and requirements. To participate in the design of health care technologies nurses need motivation and specific competencies. Organizations should facilitate time for nurses to acquire the required competencies and to be intentionally involved in technology design and development activities.
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PURPOSE: The purpose of this paper is to rethink the concept of organizational culture as something that emerges bottom-up by using the sociological concepts of boundary object and boundary work as an analytical lens and to show how this approach can help understand and facilitate intersectoral coordination. DESIGN/METHODOLOGY/APPROACH: We used observations and qualitative interviews to develop "deep" knowledge about processes of intersectoral coordination. The study draws on a conceptual framework of "boundary work" and "boundary objects" to show how a bottom-up perspective on organizational culture can produce better understanding of and pave the way for intersectoral coordination. We use a case of health professionals engaged in two Danish intersectoral programs developing and providing health promotion services for women with gestational diabetes mellitus (GDM). FINDINGS: The study showed how boundary work revolves around negotiations on how to define, understand and act on the diagnosis of GDM. This diagnosis has the characteristics of a "boundary object", being more loosely structured in general terms, but strongly structured in local settings. Boundary objects help connect different professionals and facilitate coordination. The analysis showed how the introduction of time and the concept of "lifelong health promotion" helped to transgress existing organizational and professional boundaries. RESEARCH LIMITATIONS/IMPLICATIONS: The findings contribute to the literature on organizational culture and intersectoral coordination. We highlight the benefits of a practice-oriented, bottom-up perspective for a better understanding of how shared meaning is produced in cross professional coordination and collaboration. While the theoretical implications will be general applicable when studying organizational culture, the implications for practice are sensitive to context and the processes we have described as the outcomes of boundary work are generated from cases that were most likely to provide deep insight into our research topic. PRACTICAL IMPLICATIONS: For practice this can build bridges between organizational and professional boundaries. ORIGINALITY/VALUE: The findings contribute to the literature on organizational culture and intersectoral coordination. We highlight the benefits of a practice-oriented, bottom-up perspective for a better understanding of how shared meaning is produced in cross professional coordination. This may build bridges between organizational and professional boundaries in practice settings.