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1.
Am J Transplant ; 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38825154

RESUMO

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.

2.
BMC Med ; 22(1): 417, 2024 Sep 27.
Artigo em Inglês | MEDLINE | ID: mdl-39334196

RESUMO

BACKGROUND: The hearing health sector is an example of a health sector that is experiencing a period of rapid innovation driven by digital technologies. These innovations will impact the types of interventions and services available to support the communication of deaf and hard-of-hearing individuals. This study explored the perceptions of informed participants on the topic of innovation and regulation within hearing healthcare in Australia and the United Kingdom (UK). METHODS: Participants (N = 29, Australia [n = 16], UK [n = 13]) were purposively sampled and joined one of two online workshops. Participants included adults with hearing loss and family members, hearing health professionals, academics/researchers, representatives of hearing device manufacturers, regulators and policymakers. Workshop data were analysed using reflexive thematic analysis. RESULTS: Participants conceptualised the hearing health sector as a network of organisations and individuals with different roles, knowledge and interests, in a state of flux driven by innovation and regulation. Innovation and regulation were perceived as mechanisms to ensure quality and mitigate risk within a holistic approach to care. Innovations encompassed technological as well as non-technological innovations of potential benefit to consumers. Participants agreed it was essential for innovation and regulation to be congruent with societal values. Critical to ethical congruence was the involvement of consumers throughout both innovation and regulation stages, and the use of innovation and regulation to tackle stigma and reduce health disparities. Participants expressed the desire for accessible and inclusive innovation in the context of fair, transparent and trustworthy commercial practices. CONCLUSIONS: This study explored how stakeholders within the hearing health sector understand and make sense of innovation and the role of regulation. Overall, and despite reservations relating to health care professionals' changing roles and responsibilities, innovation and regulation were conceptualised as beneficial when situated in the context of holistic, whole-person, models of care. The results of this study will inform considerations to support the development and implementation of innovations and regulation within the hearing sector and across other health sectors influenced by technological advances.


Assuntos
Perda Auditiva , Humanos , Reino Unido , Austrália , Perda Auditiva/terapia , Pesquisa Qualitativa , Adulto , Atenção à Saúde , Masculino , Feminino , Pessoa de Meia-Idade
3.
J Nurs Scholarsh ; 56(2): 291-313, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37984994

RESUMO

INTRODUCTION: Hospital-acquired pressure injuries (HAPIs) are a global high-stakes patient safety issue. Key stakeholder perspectives regarding their role and experiences with pressure injuries is critical as part of the solution to minimizing HAPI occurrence and attain sustainability. DESIGN: A qualitative, descriptive approach provided multiple perspectives of key stakeholders to support the complexity of HAPI care. The qualitative data are a part of a mixed method convergent research study examining pressure injury prevention and management practices. METHODS: Nursing system theory, mixed method convergent design, and participatory action research methodologies were chosen to address both the gap analysis development and results, achieve collaborative comprehensiveness, and enable key stakeholder involvement throughout this HAPI prevention and management initiative. Participants were recruited and enrolled from a large Level I trauma hospital and the key stakeholders. Demographic information were collected prior to the individual interview. Focused interviews were conducted virtually using zoom technology. Qualitative data were analyzed using NVivo software and thematic analysis was confirmed across the co-investigators for congruence and applicability to the research questions. RESULTS: Qualitative interviews with 26 key stakeholders provided data to support and integrate a link with gap analysis results on the complex health issue of HAPIs. Specific barrier and recommendation themes identified interventions that could be prioritized. The 52 barrier and 52 recommendation themes/sub-theme(s) respectively were organized by Donabedian (structure, process, and outcome) with structure elements the majority. The top three structure barrier themes involved equipment and standards for use, staff prevention education, and specialized health professionals. The top three structure recommendation themes involved specialized health professionals, equipment and standards for use, and an educational plan for those at risk or with HAPIs. CONCLUSION: The article provides findings from the qualitative portion of a mixed method study related to HAPIs. The qualitative findings associated with the gap analysis quantitative results, achieved the goal of the participatory action research key stakeholders' input into HAPI care and can be replicated internationally. CLINICAL RELEVANCE: The benefit of key stakeholder's involvement in solving a clinical problem is sustainability. A quantitative approach and integrating qualitative stakeholders' perspectives provide an in-depth solution that will advance nursing capacity toward health care delivery and HAPI nursing science and policy development on a global level.


Assuntos
Úlcera por Pressão , Humanos , Úlcera por Pressão/prevenção & controle , Úlcera por Pressão/epidemiologia , Formulação de Políticas , Cuidados Paliativos , Pesquisa sobre Serviços de Saúde , Hospitais , Pesquisa Qualitativa
4.
Health Promot J Austr ; 35(2): 393-409, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37384432

RESUMO

ISSUE ADDRESSED: Supporting healthy behaviours (quality diet, physical activity, sleep) through home-based interventions is feasible to improve postnatal mental health. Involving stakeholders in developing interventions is essential for maximising accessibility, implementation and scale-up. This study aimed to identify factors affecting the sustainable implementation and scalability of the Food, Move, Sleep (FOMOS) for Postnatal Mental Health program, including strategies to enhance research-practice translation. METHODS: Stakeholders (n = 13) involved in promoting physical activity, healthy eating, postnatal and mental health, public health and/or policy participated in semi-structured interviews. Interviews, based on PRACTIS Guide recommendations for implementation and scale-up, explored perceptions of program design, implementation and scalability. Reflexive thematic analysis was undertaken. Identified implementation and scale-up strategies were mapped against the Expert Recommendations for Implementing Change compendium and PRACTIS Guide. RESULTS: Individual-level: Targeting multiple systems (primary, tertiary, community-based care) and entry points (early, mid-postpartum) for uptake was important. For equity, screening women in public hospitals, engaging with community agencies and targeting most at-risk women, was suggested. Provider-level: Stakeholders identified strategies to enhance future roll-out (organisations assisting with recruitment). Factors impacting sustainability included high demand for the FOMOS program, and governance around screening and funding; online delivery, connecting with partners and providers and integration into existing services may enhance sustainability. Systems-level: Political support and community champions were perceived important for program dissemination. Nine strategies addressing program uptake, reach, implementation, potential scalability and sustainability were identified. CONCLUSIONS: For sustainable implementation and potential scalability of a home-based multi-behaviour postnatal intervention, multi-level implementation and scale-up strategies, aligned with existing health systems, policies and initiatives to support postnatal mental health should be considered. SO WHAT?: This paper provides a comprehensive list of strategies that can be used to enhance sustainable implementation and scalability of healthy behaviour programs targeting postnatal mental health. Further, the interview schedule, systematically developed and aligned with the PRACTIS Guide, may serve as a useful resource for researchers conducting similar studies in future.


Assuntos
Dieta , Saúde Mental , Humanos , Feminino , Comportamentos Relacionados com a Saúde , Alimentos , Saúde Pública
5.
Malar J ; 22(1): 384, 2023 Dec 21.
Artigo em Inglês | MEDLINE | ID: mdl-38129897

RESUMO

BACKGROUND: Gene drive modified mosquitoes (GDMMs) have the potential to address Africa's persistent malaria problem, but are still in early stages of development and testing. Continuous engagement of African stakeholders is crucial for successful evaluation and implementation of these technologies. The aim of this multi-country study was, therefore, to explore the insights and recommendations of key stakeholders across Africa on the potential of GDMMs for malaria control and elimination in the continent. METHODS: A concurrent mixed-methods study design was used, involving a structured survey administered to 180 stakeholders in 25 countries in sub-Saharan Africa, followed by 18 in-depth discussions with selected groups and individuals. Stakeholders were drawn from academia, research and regulatory institutions, government ministries of health and environment, media and advocacy groups. Thematic content analysis was used to identify key topics from the in-depth discussions, and descriptive analysis was done to summarize information from the survey data. RESULTS: Despite high levels of awareness of GDMMs among the stakeholders (76.7%), there was a relatively low-level of understanding of their key attributes and potential for malaria control (28.3%). When more information about GDMMs was provided to the stakeholders, they readily discussed their insights and concerns, and offered several recommendations to ensure successful research and implementation of the technology. These included: (i) increasing relevant technical expertise within Africa, (ii) generating local evidence on safety, applicability, and effectiveness of GDMMs, and (iii) developing country-specific regulations for safe and effective governance of GDMMs. A majority of the respondents (92.9%) stated that they would support field trials or implementation of GDMMs in their respective countries. This study also identified significant misconceptions regarding the phase of GDMM testing in Africa, as several participants incorrectly asserted that GDMMs were already present in Africa, either within laboratories or released into the field. CONCLUSION: Incorporating views and recommendations of African stakeholders in the ongoing research and development of GDMMs is crucial for instilling stakeholder confidence on their potential application. These findings will enable improved planning for GDMMs in Africa as well as improved target product profiles for the technologies to maximize their potential for solving Africa's enduring malaria challenge.


Assuntos
Culicidae , Tecnologia de Impulso Genético , Malária , Animais , Humanos , Tecnologia de Impulso Genético/métodos , África Subsaariana , Governo , Malária/prevenção & controle
6.
Can J Neurol Sci ; 50(5): 773-776, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-35912690

RESUMO

Poststroke visual impairment (VI) negatively affects rehabilitation potential and quality of life for stroke survivors. In this cross-sectional observational study, stroke survivors and providers were surveyed to quantify perspectives regarding care for poststroke VI in Alberta, Canada (n = 46 survivors; n = 87 providers). Few patients (35%) felt prepared to cope with VI at the time of discharge from acute stroke and inpatient rehabilitation settings. Less than 25% of stroke survivors, and <16% of providers, felt referral processes were adequate. 95.2% of providers and 82% of stroke survivors advocated for a provincial clinical pathway to improve care quality for poststroke VI.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Alberta/epidemiologia , Qualidade de Vida , Estudos Transversais , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/terapia , Acessibilidade aos Serviços de Saúde
7.
BMC Health Serv Res ; 23(1): 536, 2023 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-37226155

RESUMO

BACKGROUND: A new Health and Wellbeing pathway was introduced into the Improving Access to Psychological Therapies (IAPT) service in one geographical area of the UK in 2021 to address the wider determinants of mental health problems. It comprised assisted signposting to wider services and physical health promotion. This qualitative study aimed to understand stakeholders' experiences of implementing and receiving this new support and the barriers and facilitators to its delivery. METHODS: Forty-seven interviews were conducted, with service developers (n = 6), service deliverers (n = 12), service users (n = 22) and community and clinical partners (n = 7), as part of a larger mixed-methods evaluation. Interviews were recorded, transcribed, and analysed using reflexive thematic analysis. RESULTS: Three themes spanned all participant groups and represented key aspects of the service: (1) identifying suitability, (2) a holistic service, and (3) moving forward. The sub-themes represent the barriers and facilitators to processes working in practice, lending insight into potential service improvements. These included strengthening the quality of communication during referral and assessment, tailoring the support and delivery mode, and increasing transparency around continued care to drive sustained benefits. LIMITATIONS: Service users may have been selected due to their positive experiences of IAPT and were not demographically representative of the population, although participants' experiences of the service did suggest variation in our sample. CONCLUSIONS: The Health and Wellbeing pathway was perceived as having a positive impact on mental health and could reduce the burden on therapeutic services. However, service- and individual-level barriers need to be addressed to enhance statutory and community support links, manage service users' expectations, and improve accessibility for certain groups.


Assuntos
Comunicação , Saúde Mental , Humanos , Pesquisa Qualitativa , Promoção da Saúde , Exame Físico
8.
Environ Manage ; 2023 Mar 20.
Artigo em Inglês | MEDLINE | ID: mdl-36939890

RESUMO

Multistakeholder platforms (MSPs) are increasingly applied in environmental governance as institutions to collectively negotiate challenges, opportunities, and policy options in contested landscapes. However, their contributions and effectiveness depend on how stakeholders perceive and frame the role of MSPs in addressing social and environmental challenges. Despite this dependence, stakeholder perceptions of MSPs are currently under-researched. Hence this empirical study carried out in Zambia's Kalomo District asks: how do stakeholder groups perceive the role of MSPs in addressing landscape challenges, given the context of the dual land tenure system, and what does this imply for the implementation of integrated landscape approaches? This study uses Q-methodology to analyze the perceptions of purposefully selected stakeholders from state institutions, civil society organizations, land users, and others familiar with existing MSPs at the district and village levels. The findings reveal three narratives. The first one presents MSPs as institutions that foster dialogue. The second narrative foregrounds the role of the government and private sector, despite acknowledging the diversity of stakeholders in MSPs. In this narrative, MSPs should focus on supporting market-driven solutions to resolve landscape challenges. The third narrative recognizes power imbalances and considers MSPs as institutions to identify policy gaps and needs. The first two narratives are positioned in Dryzek's discourse classification as environmental problem-solving, while the third inclines toward green radicalism. Despite this divergence, there was consensus that MSPs have the potential to harmonize policies in a dual governance system and encourage dialogue between stakeholders to reconcile landscape challenges.

9.
BMC Public Health ; 22(1): 1423, 2022 07 26.
Artigo em Inglês | MEDLINE | ID: mdl-35883174

RESUMO

Current supermarket price promotions are likely to encourage unhealthy diets, leading some governments to recently endorse restrictions on price promotions for unhealthy food and beverages. However, little is known about the likely industry response to policy action in this area. The aim of this study was to understand how potential government policies targeting food and beverage price promotions in supermarkets are perceived by food industry stakeholders in Australia. Twelve semi-structured in-depth interviews were conducted with current and former employees of major food manufacturers and food retailers as well as other industry experts with experience related to price promotion practices in the Australian supermarket setting. Data were analysed deductively based on Lewin's organisational change theories and inductively to highlight forces that might drive or restrain change.From an industry perspective, forces likely to create industry opposition to implementation of price promotion policy included: fear of losing competitive advantage; potential financial loss for food retailers and their suppliers; a perception that restrictions on price promotions for unhealthy products will not impact health; and a perception of increased financial cost to consumers. Forces perceived to drive implementation of a policy that would benefit public health included: mandatory regulation; extensive compliance monitoring; support for promoting healthy products; consumer education; and sufficient lead time and support from retailers for implementation. These forces, and the way in which they interact, need to be actively considered as part of efforts to change the healthiness of food and beverage price promotions in supermarkets.


Assuntos
Comércio , Supermercados , Austrália , Bebidas , Alimentos , Indústria Alimentícia , Humanos , Políticas
10.
Sci Eng Ethics ; 28(4): 34, 2022 08 09.
Artigo em Inglês | MEDLINE | ID: mdl-35943612

RESUMO

Social categorizations regarding gender or age have proven to be relevant in human-robot interaction. Their stereotypical application in the development and implementation of robotics in eldercare is even discussed as a strategy to enhance the acceptance, well-being, and quality of life of older people. This raises serious ethical concerns, e.g., regarding autonomy of and discrimination against users. In this paper, we examine how relevant professional stakeholders perceive and evaluate the use of social categorizations and stereotypes regarding gender and age in robotics for eldercare. Based on 16 semi-structured interviews with representatives from technology development, industry, and nursing science as well as practice, we explore the subjects' awareness, evaluations, and lines of argument regarding the corresponding moral challenges. Six different approaches of dealing with categorizations and stereotypes regarding gender and age in care robotics for older people are identified: negation, functionalistic relativization, explanation, neutralization, stereotyping, and queering. We discuss the ethical implications of these approaches with regard to professional responsibility and draw conclusions for responsible age tech in pluralistic societies.


Assuntos
Robótica , Idoso , Identidade de Gênero , Humanos , Desenvolvimento Industrial , Princípios Morais , Qualidade de Vida
11.
J Environ Manage ; 279: 111571, 2021 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-33172707

RESUMO

Environmental remediation and restoration at hazardous waste sites is important for reducing risks and sustaining local economies. Navigating trade-offs between diverse and conflicting stakeholder perspectives to identify practical and affordable ways forward is important for sustaining objectives and goals. Differences in stakeholder perspectives are informed by their affiliations and roles and their views towards environmental, economic development, and public health issues. We used Q methodology, an approach that combines priority sorting and interviews, to elicit and interpret the perspectives of 28 stakeholders, representing government entities, non-profits, and industries at a mining-impacted Superfund site in the Coeur d'Alene Basin of Idaho, USA. Four primary perspectives were distinguished by their prioritization of: 1) government intervention, 2) the Superfund remediation, 3) local concerns, and 4) public-private partnerships. Participants' roles and affiliations played an influential role in informing primary perspectives. Overall, collaboration was viewed more favorably when it was associated with concrete implementation pathways.


Assuntos
Desenvolvimento Econômico , Saúde Pública , Monitoramento Ambiental , Substâncias Perigosas , Humanos , Idaho
12.
Eur J Cancer Care (Engl) ; 28(4): e13044, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31006931

RESUMO

OBJECTIVE: To assess the challenges and needs of colorectal cancer (CRC) survivors in maintaining employment and returning to work (RTW) from the perspectives of both CRC survivors and employers in the United States. METHODS: Semi-structured interviews with CRC survivors (n = 10) and employers (n = 4) were transcribed, coded and thematically analysed using NVivo 12 software. RESULTS: Workplace challenges for survivors included the following: inadequate availability of paid and unpaid leave, limited availability of workplace accommodations, and employers' lack of knowledge about CRC and the recovery process. Survivors were concerned about the lack of adequate financial resources to take unpaid leave and the need to relearn control of bodily functions. Workplace challenges for employers of cancer survivors included the following: limited institutional flexibility to provide individualised accommodations, communication with frontline managers about leave availability for employees and communication with employees about legal protections and limitations. Employers perceived that employees were unwilling to take leave. CONCLUSION: Colorectal cancer survivors in the US face difficult, sometimes insurmountable, challenges when trying to balance their physical and financial needs within the constraints of employment. Employers recognise challenges associated with this concern. Multi-level interventions-ranging from flexible work schedules to training for frontline managers-might facilitate the RTW process.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais/reabilitação , Retorno ao Trabalho/estatística & dados numéricos , Adolescente , Adulto , Idoso , Atitude Frente a Saúde , Neoplasias Colorretais/psicologia , Comunicação , Emprego/psicologia , Emprego/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Direitos do Paciente , Presenteísmo/estatística & dados numéricos , Retorno ao Trabalho/psicologia , Licença Médica/estatística & dados numéricos , Estados Unidos , Local de Trabalho/psicologia , Local de Trabalho/estatística & dados numéricos , Adulto Jovem
13.
Int J Health Plann Manage ; 33(2): 364-379, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29072341

RESUMO

BACKGROUND: There is an increasing tendency to reconfigure acute hospital care towards a more centralised and specialised model, particularly for complex care conditions. Although centralisation is presented as "evidence-based", the relevant studies are often challenged by groups which hold perspectives and values beyond those implicit in the literature. This study investigated stakeholder perspectives on the rationale for the reconfiguration of urgent and emergency care in Ireland. Specifically, it considered the hypothesis that individuals from different stakeholder groups would endorse different positions in relation to the motivation for, and goals of, reconfiguration. METHODS: Documentary analysis of policy documents was used to identify official justifications for change. Semi-structured interviews with 175 purposively sampled stakeholders explored their perspectives on the rationale for reconfiguration. RESULTS: While there was some within-group variation, internal and external stakeholders generally vocalised different lines of argument. Clinicians and management in the internal stakeholder group proposed arguments in favour of reconfiguration based on efficiency and safety claims. External stakeholders, including hospital campaigners and local political representatives expressed arguments that focused on access to care. A "voter" argument, focused on the role of local politicians in determining the outcome of reconfiguration planning, was mentioned by both internal and external stakeholders, often in a critical fashion. CONCLUSION: Our study adds to an emerging literature on the interaction between a technocratic approach to health system planning advocated by clinicians and health service managers, and the experiential "non-expert" claims of the public and patients.


Assuntos
Serviços Médicos de Emergência/organização & administração , Planejamento em Saúde , Feminino , Humanos , Entrevistas como Assunto , Irlanda , Pesquisa Qualitativa
14.
BMC Pregnancy Childbirth ; 17(1): 264, 2017 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-28854888

RESUMO

BACKGROUND: Promoting awareness of rights is a value-based process that entails a different way of thinking and acting, which is at times misunderstood or deemed as aspirational. METHODS: Guided by the SURE framework, we undertook a secondary analysis of 26 documents identified by an earlier systematic review on promoting awareness of rights to increase use of maternity care services. We thematically analysed stakeholder experiences and implementation factors across the diverse initiatives to derive common elements to guide future efforts. RESULTS: Interventions that promote awareness of rights for maternal health varied in nature, methodological orientation, depth and quality. Materials included booklets, posters, pamphlets/ briefs and service standards/charters. Target populations included women, family members, communities, community structures, community-based and non governmental organizations, health providers and administrators, as well as elected representatives. While one initiative only focused on raising awareness, most were embedded within larger efforts to improve the accountability and responsiveness of service delivery through community monitoring and advocacy, with a few aiming to change policies and contest elections. Underlying these action oriented forms of promoting awareness of rights, was a critical consciousness and attitudinal change gained through iterative capacity-building for all stakeholders; materials and processes that supported group discussion and interaction; the formation or strengthening of community groups; situational analysis to ensure adaptation to local context; facilitation to ensure common ground and language across stakeholders; and strategic networking and alliance building across health system levels. While many positive experiences are discussed, few challenges or barriers to implementation are documented. The limited documentation and poor quality of information found indicate that while various examples of promoting awareness of rights for maternal health exists, research partnerships to systematically evaluate their processes, learning and effects are lacking. CONCLUSION: Rather than being aspirational, several examples of promoting awareness of women's rights for quality maternity care services exist. More than mainly disseminate information, they aim to change stakeholder mindsets and relationships across health system levels. Due to their transformatory intent they require sustained investment, with strategic planning, concrete operationalization and political adeptness to manage dynamic stakeholder expectations and reactions overtime. More investment is also required in research partnerships that support such initiatives and better elucidate their context specific variations.


Assuntos
Implementação de Plano de Saúde/organização & administração , Promoção da Saúde/organização & administração , Serviços de Saúde Materna/normas , Direitos da Mulher , Fortalecimento Institucional , Feminino , Implementação de Plano de Saúde/métodos , Promoção da Saúde/métodos , Humanos , Gravidez , Responsabilidade Social
15.
Health Expect ; 18(5): 1769-82, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24372800

RESUMO

BACKGROUND: Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS . OBJECTIVE: The aim was to examine the question: how can decision making that is both effective and patient-centred be enacted in ALS multidisciplinary care? SETTING AND PARTICIPANTS: Fifty-four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi-structured interviews. Interviews were transcribed, coded and analysed thematically. RESULTS: Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision-making process; patient-centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non-specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: 'Participant Engagement'; 'Option Information'; 'Option Deliberation'; and 'Decision Implementation'. DISCUSSION: Effective and patient-centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient-centred decision making, by incorporating patients' cyclic decision-making patterns and facilitating carer inclusion in decision processes. CONCLUSIONS: The model captures the complexities of patient-centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.


Assuntos
Esclerose Lateral Amiotrófica/psicologia , Cuidadores/psicologia , Tomada de Decisões , Adulto , Idoso , Esclerose Lateral Amiotrófica/terapia , Progressão da Doença , Feminino , Pessoal de Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente/métodos , Qualidade de Vida
16.
Autism ; 28(4): 920-931, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37491973

RESUMO

LAY ABSTRACT: Improving social communication is often one goal during early autism services. However, researchers do not yet know whether their ideas about which social communication skills should be targeted during services for young autistic children are the same as the goals of autism community members, such as parents, teachers, and expert clinicians. This study used focus groups (meetings of small groups of community members) to ask people from these groups about what aspects of social communication are most important to support in young autistic children. A total of 43 people participated in these focus groups. These groups included parents (three groups; 21 people), teachers (two groups; 8 people), and experts in early social communication and autism (two groups; 14 people). Focus group participants talked about several aspects of social communication that were already familiar to the research team, such as problems with expressive communication, language understanding, and social interaction. However, participants also talked about several parts of social communication that were less familiar to the research team and had usually not been mentioned in previous research. These included (1) considering the value of unusual forms of communication, (2) taking context and setting into account when considering social communication, and (3) how communication and emotion regulation impact one another. The information from these focus groups will be helpful to making sure that researchers and clinicians focus their social communication supports on areas that are most important to parents and teachers.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Formação de Conceito , Comunicação , Pais
17.
JMIR Nurs ; 7: e55962, 2024 Jul 25.
Artigo em Inglês | MEDLINE | ID: mdl-39052315

RESUMO

BACKGROUND: Although the use of artificial intelligence (AI)-based technologies, such as AI-based decision support systems (AI-DSSs), can help sustain and improve the quality and efficiency of care, their deployment creates ethical and social challenges. In recent years, a growing prevalence of high-level guidelines and frameworks for responsible AI innovation has been observed. However, few studies have specified the responsible embedding of AI-based technologies, such as AI-DSSs, in specific contexts, such as the nursing process in long-term care (LTC) for older adults. OBJECTIVE: Prerequisites for responsible AI-assisted decision-making in nursing practice were explored from the perspectives of nurses and other professional stakeholders in LTC. METHODS: Semistructured interviews were conducted with 24 care professionals in Dutch LTC, including nurses, care coordinators, data specialists, and care centralists. A total of 2 imaginary scenarios about AI-DSSs were developed beforehand and used to enable participants articulate their expectations regarding the opportunities and risks of AI-assisted decision-making. In addition, 6 high-level principles for responsible AI were used as probing themes to evoke further consideration of the risks associated with using AI-DSSs in LTC. Furthermore, the participants were asked to brainstorm possible strategies and actions in the design, implementation, and use of AI-DSSs to address or mitigate these risks. A thematic analysis was performed to identify the opportunities and risks of AI-assisted decision-making in nursing practice and the associated prerequisites for responsible innovation in this area. RESULTS: The stance of care professionals on the use of AI-DSSs is not a matter of purely positive or negative expectations but rather a nuanced interplay of positive and negative elements that lead to a weighed perception of the prerequisites for responsible AI-assisted decision-making. Both opportunities and risks were identified in relation to the early identification of care needs, guidance in devising care strategies, shared decision-making, and the workload of and work experience of caregivers. To optimally balance the opportunities and risks of AI-assisted decision-making, seven categories of prerequisites for responsible AI-assisted decision-making in nursing practice were identified: (1) regular deliberation on data collection; (2) a balanced proactive nature of AI-DSSs; (3) incremental advancements aligned with trust and experience; (4) customization for all user groups, including clients and caregivers; (5) measures to counteract bias and narrow perspectives; (6) human-centric learning loops; and (7) the routinization of using AI-DSSs. CONCLUSIONS: The opportunities of AI-assisted decision-making in nursing practice could turn into drawbacks depending on the specific shaping of the design and deployment of AI-DSSs. Therefore, we recommend considering the responsible use of AI-DSSs as a balancing act. Moreover, considering the interrelatedness of the identified prerequisites, we call for various actors, including developers and users of AI-DSSs, to cohesively address the different factors important to the responsible embedding of AI-DSSs in practice.


Assuntos
Inteligência Artificial , Tomada de Decisões , Assistência de Longa Duração , Pesquisa Qualitativa , Humanos , Assistência de Longa Duração/métodos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Países Baixos , Entrevistas como Assunto
18.
J Cancer Policy ; 40: 100474, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38513969

RESUMO

INTRODUCTION: In Kazakhstan, a country of 19 million residents, more than 100,000 patients need palliative care. Since at least one family member is usually involved in the care of a terminal patient, more than 200,000 people would benefit from high-quality palliative care services in the country. However, with only 45 physicians and 101 nurses attending to 1925 palliative beds, Kazakhstan seeks to develop palliative services that meet the national needs in resource-limited settings and international standards. The objectives of this study are to explore the challenges faced by stakeholders involved in palliative care in Kazakhstan and to subsequently provide recommendations that can guide policymakers towards further developing palliative care services in the country. METHODS: This cross-sectional descriptive study collected narrative data with in-depth interviews from n= 29 palliative stakeholders (family caregivers n= 12, healthcare professionals =12, administrators n= 5) across five regions of Kazakhstan. Verbatim transcripts of interviews were analyzed using content analysis to identify needs and challenges of stakeholders involved in palliative care. RESULTS: Our analysis identified seven main challenges of palliative care stakeholders: high out-of-pocket expenditures; lack of mobile palliative care services for home-based care; severe shortages of opioids to prevent pain suffering; poor formal palliative care education; absence of practical skills training for family caregivers; lack of awareness about palliative care in the society, and lack of state support. CONCLUSION: Implementation of national palliative care strategies and policies require a large-scale coordinated involvement of all stakeholders. Our recommendations are based on the idea that coordinated, targeted, and tailored stakeholder engagement is preferred to a one-size-fits-all strategy.


Assuntos
Cuidados Paliativos , Humanos , Cuidados Paliativos/organização & administração , Cazaquistão , Estudos Transversais , Masculino , Feminino , Pessoal de Saúde , Cuidadores , Adulto , Pessoa de Meia-Idade , Região de Recursos Limitados
19.
J Clin Med ; 13(11)2024 May 25.
Artigo em Inglês | MEDLINE | ID: mdl-38892817

RESUMO

Background: Chronic bothersome tinnitus is a prevalent tinnitus subtype placing a high burden on affected individuals, economies, and healthcare systems. Patient and professional perspectives seem to be partly misaligned on how to improve tinnitus research and treatments in the future. This qualitative interview study was aimed at exploring, comparing, and stipulating the perspectives of different tinnitus stakeholder groups on ways of redirecting research and treatments to reduce patients' suffering while accounting for challenges within these practices. Methods: This study used the participatory action research approach to facilitate the stakeholder involvement. Semi-structured online interviews including five participants (two tinnitus patients, two tinnitus researchers and medical specialists, one general practitioner) were conducted. Inductive grounded theory and the constant comparative method were used for data analysis. Results: Four categories for suggested research adaptations ((I) ethical patient involvement; (II) prioritising cure versus coping research; (III) funding; (IV) ethical publication) and six categories for suggested treatment adaptations ((I) ethical professional support; (II) patient involvement; (III) interdisciplinarity; (IV) professional tinnitus education; (V) clinical treatment guidelines; (VI) psychological treatment) were identified. Participants held partly similar priorities such as increasing pathophysiological and cure research. Differences between participants included, for instance, patients aiming for increasing patient involvement in tinnitus research and treatments compared to professionals arguing that the excessive focus on patients' conditions might reduce the patients' chances of habituating to their symptoms. Conclusions: Four action redirections for improving tinnitus research and treatment practices were defined: (I) facilitating communication between and within stakeholder groups, (II) increasing the reflective use of patient involvement, (III) increasing interdisciplinarity, and (IV) reducing barriers to receiving psychological treatment.

20.
Front Psychiatry ; 15: 1385947, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38919639

RESUMO

Augmentative alternative communication (AAC) devices or systems are often prescribed to minimally verbal or nonspeaking autistic individuals and other individuals with complex communication needs to facilitate communication or as an alternative to spoken language. AAC use can result in communication gains and improved quality of life for minimally verbal or nonspeaking individuals. Despite this, AAC abandonment is high, limiting societal participation of the individual on the autism spectrum with complex communication needs. Our study is a novel exploration of the barriers of AAC use from a multi-stakeholder perspective, and a qualitative analysis of similarities and differences between stakeholders. We conducted semi-structured interviews and focus groups with 30 parent-carers, educators and clinicians currently supporting AAC users in Western Australia and analysed the data using reflexive thematic analysis. Barriers from each stakeholder group were coded, resulting in 17 subthemes forming five main themes common to all stakeholders: Stakeholder Knowledge, Stakeholder Attitudes and Stigma, Resources, AAC User Engagement, and Device Fit. Contrasting perspectives included actual and perceived stigma associated with AAC use (parent-carers vs clinicians); different struggles with resources and knowledge (parent-carers vs clinicians and educators); and a lack of clinician communication in the processes that determined AAC-fit for school environments (educators only). Findings are discussed in the context of improving inter-stakeholder collaboration and capacity building in Australian health service and practice to better support minimally verbal or nonspeaking autistic individuals and individuals with complex communication needs. Suggestions are also offered for communication partner training.

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