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1.
Health Expect ; 27(3): e14091, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38924218

RESUMO

BACKGROUND: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. METHODS: Using Q-methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow-up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by-person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. RESULTS: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision-making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. CONCLUSIONS: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. PATIENT OR PUBLIC CONTRIBUTION: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications.


Assuntos
Cuidadores , Comportamento Cooperativo , Humanos , Cuidadores/psicologia , Idoso , Masculino , Feminino , Países Baixos , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Pessoal de Saúde/psicologia , Entrevistas como Assunto , Pesquisa Qualitativa , Relações Profissional-Paciente
2.
Global Health ; 19(1): 90, 2023 Nov 23.
Artigo em Inglês | MEDLINE | ID: mdl-37996877

RESUMO

INTRODUCTION: Pooled procurement can be seen as a collaboration initiative of buyers. Such mechanisms have received increased attention during the Covid-19 pandemic to improve access to affordable and quality-assured health commodities. The structural form of pooled procurement mechanisms ranges from a third-party organization that procures on behalf of its buyers to a buyer's owned mechanism in which buyers operate more collaboratively. However, little is known about how these types of pooled procurement mechanisms differ in terms of characteristics, implementation and developmental process. To fill this gap, we compared four pooled procurement mechanisms. Two buyer's owned mechanisms: the Organisation of the Eastern Caribbean States (OECS) and the Pacific Island Countries (PIC). And two third-party mechanisms: the Global Drug Facility (GDF) and the Asthma Drug Facility (ADF). METHODS: For this qualitative study, we used a multiple case-study design. The cases were purposefully selected, based on a most-similar case study design. We used the Pooled Procurement Guidance to collect data on individual cases and compared our findings between the case studies. For our analysis, we drew upon peer-reviewed academic articles, grey literature documents and 9 semi-structured interviews with procurement experts. RESULTS: Buyers within a buyer's owned mechanisms differ in procurement systems, financing structures, product needs and regulatory and legal frameworks. Therefore, buyers within such mechanisms require relative alignment on motivations, goals and operations of the mechanism. Our study showed that buyers' relative homogeneity of characteristics and their perceived urgency of the problems was particularly relevant for achieving that alignment. Third-party organization mechanisms require less alignment and consensus-building between buyers. To participate, buyers need to align with the operations of the third-party organization, instead of other buyers. Elements that were essential for the successful implementation and operation of such mechanisms included the procurement secretariat's ability to create local and global awareness around the problem, to induce political will to act upon the problem, to mobilize sufficient funding and to attract qualified staff. CONCLUSION: To successfully sustain pooled procurement mechanisms over time, key actors should drive the mechanism through continuous and reflexive work on stakeholder engagement, mobilization of funding and alignment of interests and needs.


Assuntos
Organizações , Pandemias , Humanos , Região do Caribe , Ilhas do Pacífico
3.
Health Expect ; 2023 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-37814486

RESUMO

BACKGROUND: The role of patient participation and representation during crises, such as the COVID-19 pandemic, has been under-researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID-19 pandemic. METHODS: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. RESULTS: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision-making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision-making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. CONCLUSIONS: The struggle for patient representation during pandemic decision-making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision-making offer lessons for future representation activities. However, adaptations to the crisis decision-making structure are also needed to enable patient representatives to play their role. PATIENT CONTRIBUTION: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co-authored this paper.

4.
Sociol Health Illn ; 2023 Nov 15.
Artigo em Inglês | MEDLINE | ID: mdl-37966700

RESUMO

In this article we examine the fragmented interpretation and implementation of a remarkably popular concept, value-based health care (VBHC). By building on a case study of a project team working on the development of value-based primary care services for elderly patients, we shed new light on the way in which VBHC transitions from theory to practice. The concept of 'translation' is used to theoretically frame our analysis. Between June 2021 and May 2022, we gathered data through participant observation (50 h), semi-structured interviews (n = 20) and document analysis (n = 16). Our findings show how VBHC inspired new ways of working, and that, in line with previous studies, parts of the original concept have been neglected, while others have been modified. We identified three reasons for VBHC's locally varied applications: VBHC transforms to enable a growing support base, the originally radical idea is applied conservatively and the concept tends to get mixed up with other policy objectives. In all, VBHC appears to be successful in catalysing cross-disciplinary interaction aimed at improving value for patients.

5.
Health Expect ; 25(5): 2246-2254, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35178839

RESUMO

INTRODUCTION: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. METHODS: Through a participatory research approach, EBCD was adjusted to long-term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. RESULTS: The participatory research resulted in the development of 'Ask us!'-a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible. CONCLUSION: The result of a robust participatory process, 'Ask us!' is a promising method for participatory quality improvement in long-term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. PATIENT OR PUBLIC CONTRIBUTION: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Humanos , Idoso , Idoso de 80 Anos ou mais , Deficiência Intelectual/terapia , Vida Independente , Melhoria de Qualidade , Assistência de Longa Duração
6.
BMC Health Serv Res ; 22(1): 1193, 2022 Sep 22.
Artigo em Inglês | MEDLINE | ID: mdl-36138382

RESUMO

BACKGROUND: A crucial component of value-based health care concerns the redesign of organizational structures. In theory, hospital structures should follow value creation: addressing medical conditions for specific groups of patients over full cycles of care. In practice, however, it remains unclear how hospitals can reorganize themselves into value-based structures. The purpose of this study is to explore the ways in which Dutch hospitals are currently implementing and pursuing value-based redesign. METHODS: This qualitative exploratory study used semi-structured interviews and a focus group for data collection. Transcripts were analyzed through deductive coding, for which we used Mintzberg's theory on organizational structures, particularly his work on design parameters. RESULTS: In their efforts to create more value-based structures, Dutch hospitals often employ a variety of liaison devices, such as project teams and committees. By contrast, the actual formation of units around medical conditions is much rarer. Outcome data are widely used within planning and control systems, and some hospitals partake in external benchmarking. Not all hospitals use cost indicators for monitoring performance. CONCLUSIONS: Value-based redesign is not necessarily a matter of radical changes or binary choices. Instead, as Dutch hospitals show, it can be an incremental process, with a variety of potential knobs to turn to various degrees. Health care executives, managers, and professionals thus have a wide range of options when they aim for more value-based structures. Our conceptualization of "value-based design parameters" can help guide the selection and implementation of strategies and mechanisms for further coordination around medical conditions over full cycles of care.


Assuntos
Atenção à Saúde , Hospitais , Humanos , Países Baixos , Pesquisa Qualitativa
7.
BMC Health Serv Res ; 21(1): 104, 2021 Jan 30.
Artigo em Inglês | MEDLINE | ID: mdl-33516206

RESUMO

BACKGROUND: The delivery of high-quality service in nursing homes and homecare requires collaboration and shared understanding among managers, employees, users and policy makers from across the healthcare system. However, conceptualizing healthcare professionals' perception of quality beyond hospital settings (e.g., its perspectives, defining attributes, quality dimensions, contextual factors, dilemmas) has rarely been done. This study therefore explores the meaning of "quality" among healthcare managers and staff in nursing homes and homecare. METHODS: The study applies a cross-sectional qualitative design with focus groups and individual interviews, to capture both depth and breadth of conceptualization of quality from healthcare professionals in nursing homes and homecare. We draw our data from 65 managers and staff in nursing homes and homecare services in Norway and the Netherlands. The participants worked as managers (n = 40), registered nurses (RNs) or assistant nurses (n = 25). RESULTS: The analysis identified the two categories and four sub-categories: "Professional issues: more than firefighting" (subcategories "professional pride" and "competence") and "patient-centered approach: more than covering basic needs" (subcategories "dignity" and "continuity"). Quality in nursing homes and homecare is conceptualized as an ongoing process based on having the "right competence," good cooperation across professional groups, and patient-centered care, in line with professional pride and dignity for the patients. CONCLUSION: Based on the understanding of quality among the healthcare professionals in our study, quality should encompass the softer dimensions of professional pride and competence, as well as a patient-centered approach to care. These dimensions should be factors in improvement activities and in daily practice.


Assuntos
Serviços de Assistência Domiciliar , Casas de Saúde , Estudos Transversais , Humanos , Países Baixos , Noruega
8.
BMC Health Serv Res ; 20(1): 862, 2020 Sep 14.
Artigo em Inglês | MEDLINE | ID: mdl-32928203

RESUMO

BACKGROUND: Today's remarkable popularity of value-based health care (VBHC) is accompanied by considerable ambiguity concerning the very meaning of the concept. This is evident within academic publications, and mirrored in fragmented and diversified implementation efforts, both within and across countries. METHOD: This article builds on discourse analysis in order to map the ambiguity surrounding VBHC. We conducted a document analysis of publicly accessible, official publications (n = 22) by actors and organizations that monitor and influence the quality of care in the Netherlands. Additionally, between March and July 2019, we conducted a series of semi-structured interviews (n = 23) with national stakeholders. RESULTS: Our research revealed four discourses, each with their own perception regarding the main purpose of VBHC. Firstly, we identified a Patient Empowerment discourse in which VBHC is a framework for strengthening the position of patients regarding their medical decisions. Secondly, in the Governance discourse, VBHC is a toolkit to incentivize providers. Thirdly, within the Professionalism discourse, VBHC is a methodology for healthcare delivery. Fourthly, in the Critique discourse, VBHC is rebuked as a dogma of manufacturability. We also show, however, that these diverging lines of reasoning find common ground: they perceive shared decision-making to be a key component of VBHC. Strikingly, this common perception contrasts with the pioneering literature on VBHC. CONCLUSIONS: The four discourses will profoundly shape the diverse manners in which VBHC moves from an abstract concept to the practical provision and administration of health care. Moreover, our study reveals that VBHC's conceptual ambiguity largely arises from differing and often deeply rooted presuppositions, which underlie these discourses, and which frame different perceptions on value in health care. The meaning of VBHC - including its perceived implications for action - thus depends greatly on the frame of reference an actor or organization brings to bear as they aim for more value for patients. Recognizing this is a vital concern when studying, implementing and evaluating VBHC.


Assuntos
Atenção à Saúde/métodos , Humanos , Países Baixos
9.
BMC Health Serv Res ; 20(1): 616, 2020 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-32631343

RESUMO

BACKGROUND: In the regulation of healthcare, the subject of patient and family involvement figures increasingly prominently on the agenda. However, the literature on involving patients and families in regulation is still in its infancy. A systematic analysis of how patient and family involvement in regulation is accomplished across different health systems is lacking. We provide such an overview by mapping and classifying methods of patient and family involvement in regulatory practice in four countries; Norway, England, the Netherlands, and Australia. We thus provide a knowledge base that enables discussions about possible types of involvement, and advantages and difficulties of involvement encountered in practice. METHODS: The research design was a multiple case study of patient and family involvement in regulation in four countries. The authors collected 1) academic literature if available and 2) documents of regulators that describe user involvement. Based on the data collected, the authors from each country completed a pre-agreed template to describe the involvement methods. The following information was extracted and included where available: 1) Method of involvement, 2) Type of regulatory activity, 3) Purpose of involvement, 4) Who is involved and 5) Lessons learnt. RESULTS: Our mapping of involvement strategies showed a range of methods being used in regulation, which we classified into four categories: individual proactive, individual reactive, collective proactive, and collective reactive methods. Reported advantages included: increased quality of regulation, increased legitimacy, perceived justice for those affected, and empowerment. Difficulties were also reported concerning: how to incorporate the input of users in decisions, the fact that not all users want to be involved, time and costs required, organizational procedures standing in the way of involvement, and dealing with emotions. CONCLUSIONS: Our mapping of user involvement strategies establishes a broad variety of ways to involve patients and families. The four categories can serve as inspiration to regulators in healthcare. The paper shows that stimulating involvement in regulation is a challenging and complex task. The fact that regulators are experimenting with different methods can be viewed positively in this regard.


Assuntos
Atenção à Saúde/legislação & jurisprudência , Família/psicologia , Participação do Paciente/métodos , Austrália , Inglaterra , Humanos , Países Baixos , Noruega
10.
Issues Ment Health Nurs ; 41(4): 283-295, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31990626

RESUMO

Mental health professionals are expected to stimulate the participation of service users with serious mental illness. This not only changes what is expected from service users and professionals, it also changes the values underlying their relationship. The value of autonomy becomes more important as a result. This raises potential ethical dilemmas. This paper reports the findings of a thematic synthesis of 28 papers on the views of service users, professionals and family members on the care relationship in inpatient, outpatient and community services for people with serious mental illness. It puts forward various perspectives on participation of service users, foregrounding differing values, which in turn can lead to ethical dilemmas for professionals. The key implications for mental health professionals and future research are discussed.


Assuntos
Transtornos Mentais/terapia , Serviços de Saúde Mental/ética , Seleção de Pacientes/ética , Humanos
11.
Health Expect ; 21(6): 1171-1182, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30221463

RESUMO

BACKGROUND: Patient involvement in the decision-making process, especially for chronically ill elderly patients, has become an important element of patient-centred primary care in many countries, including the Netherlands. This study openly explores different perspectives of patients, informal caregivers and primary care professionals on patient involvement in primary care team interactions. METHODS: Sixty-four qualitative semi-structured interviews with chronically ill elderly patients, informal caregivers and primary care professionals from various disciplines. Underpinned by a phenomenology approach, this study used conventional content analysis for data analysis. RESULTS: Participants have different views of the roles of patients and informal caregivers in the primary care team and thus different expectations of the extent and level of patient involvement. Three challenges impact patient involvement in the team: (a) patients feel misunderstood and less involved that they would like when professionals take control, (b) patients have to balance the conflicting opinions of different professionals and (c) informal caregivers act undesirably as team leaders due to their own view of the level of patient involvement. DISCUSSION AND CONCLUSION: Patient involvement is formed in complex interactions between patients, informal caregivers and multiple professionals whose perspectives and expectations can be misaligned. Recognizing the value of patients and informal caregivers on the team could help professionals to understand them better and thus limit the likelihood of challenges arising in team interactions.


Assuntos
Cuidadores/psicologia , Equipe de Assistência ao Paciente , Participação do Paciente/psicologia , Pacientes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Países Baixos , Atenção Primária à Saúde , Pesquisa Qualitativa
12.
BMC Health Serv Res ; 18(1): 226, 2018 04 02.
Artigo em Inglês | MEDLINE | ID: mdl-29606117

RESUMO

BACKGROUND: Users of care services are increasingly participating in inspections of the quality of care. In practice, incorporating service users' views is difficult, as users may have other views on good care than inspectors and thus give information that does not fit the inspectors' assessment criteria. This study compared the views on good care of young care users (adolescents) and inspectors, seeking to understand what the differences and similarities mean to incorporating the users' views in inspections. METHODS: We conducted a single-case study combining document analysis with a meeting with inspectors. The selected case came from a Dutch inspectorate and involved a thematic inspection of care for children growing up poor. RESULTS: Inspectors and adolescents agree on the importance of timely care, creating opportunities for personal development, and a respectful relationship. The views on quality of care differ with regard to sharing information, creating solutions, and the right moment to offer help. We identified three ways inspectors deal with the differences: 1) prioritize their own views, 2) pass the problem onto others to solve, and 3) separate the differing perspectives. With similar viewpoints, inspectors use the adolescents' views to support their assessments. When viewpoints conflict, information from adolescents does not affect the inspectors' judgments. Explanations are related to the vulnerability of the adolescents involved, the inspectorate's organizational rules and routines and the external regulatory context. CONCLUSIONS: Service user involvement in inspections potentially impacts the quality of care. Yet, conflicts between the views of service users and inspectors are not easily overcome in the regulatory context.


Assuntos
Atenção à Saúde/normas , Qualidade da Assistência à Saúde/normas , Adolescente , Serviços de Saúde do Adolescente/normas , Criança , Serviços de Saúde da Criança/normas , Feminino , Órgãos Governamentais , Humanos , Masculino , Pobreza
13.
Health Expect ; 20(5): 952-960, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28152248

RESUMO

BACKGROUND AND CONTEXT: Many countries are giving patients a more active role in health care, on both the individual and collective level. This study focuses on one aspect of the participation agenda on the individual level: self-management. The study explores self-management in practice, including the implications of the difficulties encountered. OBJECTIVE: To gain insight into the complexity of self-management practice. This is crucial for developing both self-management interventions and the participation policy agenda. METHODS: Qualitative semi-structured interviews with experts (n=6) and patients with a chronic condition (n=20). RESULTS: In terms of level of involvement and type of activity, shaping self-management in practice depends on personal and social dynamics, patients' ideas of the good life and their interactions with care professionals. Clashes can arise when patients and professionals hold differing ideas, based on different values, about the level and type of patient involvement. DISCUSSION: The discussion on self-management should account for the fact that how we define self-management is very much a normative issue. It depends on the norms and values of patients, professionals and underlying health-care policies. Differing ideas present professionals with ethical dilemmas which they should reflect on. However, professional reflection alone is not enough to deal with these dilemmas. The participation agenda needs far wider ranging reflection on how participation relates to other values in health care.


Assuntos
Doença Crônica/terapia , Conhecimentos, Atitudes e Prática em Saúde , Relações Profissional-Paciente/ética , Autogestão/ética , Atitude do Pessoal de Saúde , Doença Crônica/psicologia , Feminino , Estilo de Vida Saudável , Humanos , Relações Interpessoais , Entrevistas como Assunto , Masculino , Participação do Paciente/psicologia , Pesquisa Qualitativa , Autogestão/psicologia
16.
Health Expect ; 18(5): 1463-73, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24112128

RESUMO

BACKGROUND: Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health-care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health-care institutions is overlooked in research on patient/citizen participation in health care. OBJECTIVE: This research addressed the following question: What are the (political) expectations for increasing citizen participation in health-care regulation and how do these compare to regulators' expectations and experiences in practice? DESIGN: Because of the largely explorative nature of this study, we used qualitative methods (document and web analysis, focus groups and interviews) to answer this question. RESULTS: Our study shows that inspectors already have experience with participatory formats that lead to important information. There are three areas where the IGZ is currently increasing citizen participation: (i) providing individuals with information about inspectorate processes and activities, (ii) including patients as sources of information, and (iii) formally reviewing how citizen participation is ensured by health-care institutions. In situations where the patient has the clearest overview of the whole care trajectory, intensive methods of participation deliver valuable information. CONCLUSIONS: It is important to target participation activities and to capitalize on existing opportunities and activities, rather than creating participation activities for the sake of participation. In this regard, further research on the effectiveness and efficacy of different participatory strategies is necessary.


Assuntos
Participação da Comunidade , Regulamentação Governamental , Equipes de Administração Institucional/organização & administração , Grupos Focais , Órgãos Governamentais , Países Baixos , Segurança do Paciente/normas , Política , Pesquisa Qualitativa , Garantia da Qualidade dos Cuidados de Saúde/normas
17.
Health Expect ; 18(5): 942-55, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23634973

RESUMO

BACKGROUND: Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting. OBJECTIVE: To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development. METHODS: Dutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi-structured interviews were conducted with actors involved in guideline development (n = 25). RESULTS: The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence-based guideline development lose credibility as representatives for 'true' patients. DISCUSSION AND CONCLUSIONS: We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision-making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Participação do Paciente/métodos , Formulação de Políticas , Guias de Prática Clínica como Assunto , Tomada de Decisões , Medicina Baseada em Evidências , Humanos , Entrevistas como Assunto , Países Baixos , Assistência Centrada no Paciente
18.
Disabil Soc ; 39(3): 743-766, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38482454

RESUMO

Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users' experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden.


Points of interestPeople with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people's needs (e.g. person-centered planning), builds on people's strengths and contributes to recovery and community participation.Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: 'burden of support'.Examples of burden of support identified include:Clients' needs and wishes are sometimes not sufficiently attended too when working with a personal care plan.Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment.The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs.Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness.The research recommended that those who improve services should also alleviate these burdens.

19.
J Health Polit Policy Law ; 38(1): 57-87, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23052688

RESUMO

In many Western countries, options for citizens to influence public services are increased to improve the quality of services and democratize decision making. Possibilities to influence are often cast into Albert Hirschman's taxonomy of exit (choice), voice, and loyalty. In this article we identify delegation as an important addition to this framework. Delegation gives individuals the chance to practice exit/choice or voice without all the hard work that is usually involved in these options. Empirical research shows that not many people use their individual options of exit and voice, which could lead to inequality between users and nonusers. We identify delegation as a possible solution to this problem, using Dutch health care as a case study to explore this option. Notwithstanding various advantages, we show that voice and choice by delegation also entail problems of inequality and representativeness.


Assuntos
Comportamento de Escolha , Participação da Comunidade , Tomada de Decisões Gerenciais , Atenção à Saúde/organização & administração , Atenção à Saúde/normas , Política de Saúde , Humanos , Países Baixos , Estudos de Casos Organizacionais , Política , Qualidade da Assistência à Saúde
20.
J Pharm Policy Pract ; 16(1): 73, 2023 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-37316927

RESUMO

INTRODUCTION: Buyers of medicines and vaccines are increasingly interested in pooling their procurement to improve access to affordable and quality-assured health commodities. However, the academic literature has provided no detailed description of how pooled procurement mechanisms are set up and develop over time. These insights are valuable as it increases our understanding of implementing and operating pooled procurement mechanisms successfully. Therefore, the aim of this paper is twofold. First, to explore how such mechanisms evolve over time. Second, to clarify the work that is needed to set up and sustain a pooled procurement mechanism. These findings have been translated into our Pooled Procurement Guidance document. METHODS: This qualitative study draws upon theoretical insights from organizational life cycles, collaborative and network governance, semi-structured interviews with procurement experts and academic and grey literature documents on pooled procurement of medicines and vaccines. RESULTS: We identified four general developmental stages of pooled procurement mechanisms: promise, creation, early operational and mature. The promise stage is characterized by initiating engagement between participating actors, while they try to convert their perceived problem(s) or opportunities into a shared vision. The creation stage is where the participating actors formalize and design the mechanism through consensus-building, articulation of a shared plan, and mobilize resources to put the shared plan into action. The early operational stage is where the shared plan is being executed. The newly established or appointed procurement organization is required to learn fast from experience while showing flexibility to the changing needs of buyers and suppliers. Once operations are routinized, the mechanism enters the mature stage. During this stage, the pooled procurement organization develops into a trusted player that provides sufficient incentives for all actors involved. Importantly, pooled procurement mechanisms can stagnate or turn inactive at any time during the developmental process when alignment between actors is threatened. CONCLUSIONS: Pooled procurement mechanisms evolve over time. Setting up such mechanisms is a collaborative process that relies on intentional efforts by key actors involved. To increase the lifespan of pooled procurement mechanisms, key actors need to sustain a relative alignment of goals, needs, motivations and purpose of the mechanism throughout its entire life cycle.

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