Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal wellbeing and what is typically provided by services. This study focused on the role of healthcare and social welfare services in childcare and aims to contribute to understanding how parents perceive their interactions with service providers. Methods We interviewed 25 Dutch parents who cared for their child at home. Data were analysed using Framework Method. Findings Two overarching themes were found: “Being the lifeline” addressed that parents had central roles in fragmented services, and “Losing ownership” highlighted that parents were constrained in living life according to own beliefs and values while interacting with providers. Conclusions Findings illuminated that many parents became overburdened and compromised heavily on agency over family thriving due to functioning of healthcare and social welfare services. Findings supported working with integrated family case managers, creating effective and proactive access to equipment and services, and enacting high quality facilities for help with childcare and respite. These are important conditions to enable parents to construct family life more autonomously and make their further contribution to society. This may also lead to improved connotations of dependence on healthcare and social welfare services.
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This paper explores whether constitutional litigation contributes to sustaining the equity element of the right to health. Equity entails a fair distribution of the burden of healthcare financing across the different socio-economic groups of the population. A shift towards uncontrolled private healthcare provision and financing raises equity challenges by disproportionately benefitting those who are able to afford such services. The extent to which equity is enforced is an indicator of the strength of the right to health. However, do domestic constitutional courts second-guess, based on equity, policy decisions that impact on healthcare financing? Is it the task of constitutional courts to scrutinize such policy decisions? Under what conditions are courts more likely to do so? The paper addresses these questions by focusing on the case of Hungary, where the right to health has been present in the Fundamental Law adopted in 2010 and the Constitutions preceding it. While the Hungarian Constitutional Court has been traditionally cautious to review policy decisions pertaining to healthcare financing, the system has been struggling with equity issues and successive government coalitions have had limited success in tackling these. The paper discusses the role of constitutional litigation in addressing such equity concerns. In doing so, it contributes to the discussion on the role of domestic constitutional courts in the protection of social and economic rights.
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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Abstract Background: Many countries in Europe have implemented managed competition and patient choice during the last decade. With the introduction of managed competition, health insurers also became an important stakeholder. They purchase services on behalf of their customers and are allowed to contract healthcare providers selectively. It has, therefore, become increasingly important to take one's insurance into account when choosing a provider. There is little evidence that patients make active choices in the way that policymakers assume they do. This research aims to investigate, firstly, the role of patients in choosing a healthcare provider at the point of referral, then the role of the GP and, finally, the influence of the health insurer/insurance policies within this process. Methods: We videotaped a series of everyday consultations between Dutch GPs and their patients during 2015 and 2016. In 117 of these consultations, with 28 GPs, the patient was referred to another healthcare provider. These consultations were coded by three observers using an observation protocol which assessed the role of the patient, GP, and the influence of the health insurer during the referral. Results: Patients were divided into three groups: patients with little or no input, patients with some input, and those with a lot of input. Just over half of the patients (56%) seemed to have some, or a lot of, input into the choice of a healthcare provider at the point of referral by their GP. In addition, in almost half of the consultations (47%), GPs inquired about their patients' preferences regarding a healthcare provider. Topics regarding the health insurance or insurance policy of a patient were rarely (14%) discussed at the point of referral. Conclusions: Just over half of the patients appear to have some, or a lot of, input into their choice of a healthcare provider at the point of referral by their GP. However, the remainder of the patients had little or no input. If more patient choice continues to be an important aim for policy makers, patients should be encouraged to actively choose the healthcare provider who best fits their needs and preferences.
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In solving systemic design challenges designers co-create with professionals from various fields. In the context of innovation in healthcare practices, this study investigates design abilities that healthcare professionals develop by participating in co-design projects. We conducted a mixed-methods research approach consisting of five retrospective interviews with healthcare researchers involved in co-design projects, and a multiple case study (three cases) on the collaboration between design researchers and healthcare professionals. The three cases all aimed at designing tools for healthcare innovation. The cases differ in the healthcare context and the professionals involved: Paediatric physical therapists in the treatment of babies (0-2 years), supervisors (e.g. in assisted living) of people with intellectual disabilities, and academic researchers in social sciences and design research developing e-health applications for elderly people with early stages of dementia. Literature states that healthcare professionals may be competent in specific abilities related to design, but they are not trained to mode-shift and to use two different ways of working for creativity. We found that the healthcare professionals involved in co-design projects developed design ability over time, and that the research setting was supportive. Based on design abilities that the five healthcare researchers explicated in the interviews as having adopted, we suggest eight mode-shift practices related to design, which we investigated in the cases. Findings of the case-study show that two mode-shift practices related to design and innovation are difficult to adopt for healthcare professionals: Generate and synthesize; and keeping track on overview and details. These two design abilities require more training and/or experience than the other six design abilities that ran smoothly in the cases, if healthcare professionals were facilitated in the process. Healthcare professionals specifically relate two of these practices to design: Collaboration and slow down – sprint. This study discusses these findings by referring to an analogy of kayaking on a wild water river: The collaboration aspect of switching between working in a group and by yourself, like a group of kayakers who collaborate in going down stream a river but peddle by themselves in their own boats; the slowdown and sprint aspect, like kayakers who oversee the river in turning waters and sprint in between, rather than go with the flow in a raft.
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Objective: To report the study protocol and baseline characteristics of a prospective cohort study to evaluate longitudinal recovery trajectories of patients recovering from COVID-19 who have visited a primary care allied health professional. Design: Report of the protocol and baseline characteristics for a prospective cohort study with a mixed-methods approach. Patients: Patients recovering from COVID-19 treated by primary care dietitians, exercise therapists, occupational therapists, physical therapists and/or speech and language therapists in the Netherlands. Methods: The prospective study will measure primary outcome domains: participation, health-related quality of life, fatigue, physical functioning, and costs, at baseline, 3, 6, 9 and 12 months. Interviews, on the patients’ experiences with allied healthcare, will be held with a subsample of patients and allied health professionals. Results: The cohort comprises 1,451 patients (57% female, mean age 49 (standard deviation 13) years). Preliminary results for the study cohort show that 974 (67%) of the participants reported mild/moderate severity symptoms during the infection period and patients reported severe restrictions in activities of daily living compared with previous research in other patient populations. Both quantitative and qualitative, will provide insight into the recovery of patients who are treated by allied health professionals. Conclusion: In conclusion, this will be the first comprehensive study to longitudinally evaluate the recovery trajectories and related costs of patients recovering from COVID-19 who are treated by allied health professionals in the Netherlands. This study will provide evidence for the optimal strategy to treat patients recovering from COVID-19 infection, including which patients benefit, and to what extent, from treatment, and which factors might impact their recovery course over time. The preliminary results of this study demonstrated the severity of restrictions and complaints at the start of therapy are substantial.
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Background: To be accountable to laws and regulations, healthcare professionals spend more than 40% of their time on administrative tasks. The Compulsory Mental Healthcare Act (CMHA) was introduced in Dutch mental healthcare in 2020. It was hypothesized that this legislative amendment would raise the administrative burden for some care professionals. Pilot studies in 2020 and 2021 visualized the exponentially rise of the administrative burden for care professionals, especially psychiatrists due to the transition. However the total response was too small and not generalizable. Aim: gain more nationwide insight in the hypothesized raise of administrative burden of psychiatrists due to the implementation of the CMHA. Method: Under the leadership of an advisory board of three medical director psychiatrists, a Likert scale questionnaire was further developed to investigate the administrative burden of psychiatrists in the Netherlands before and after transition. Open-ended questions provided the opportunity for feedback from the psychiatrists. The study was supported by the Department of Medical Directors (DMD) of The Netherlands Psychiatric Association (NPA). Results: all mental health institutions members of the DMD of the NPA received an invitation to participate. 14 institutions (total N=158) responded. The data show a significant change in the time spent on administrative tasks, the usefulness of the administrative actions, the fit for use and ease of use of supporting systems. The forementioned all decreased significantly after the implementation. Conclusion and discussion: Psychiatrists spend more time on administration than before the legislative amendment instead of helping vulnerable patients. None of the institutions has been able to use the transition to its advantage given the time spent on administrative tasks and the usefulness of these tasks. This is an unacceptable development in the field of mental health in the Netherlands and should be addressed to those who are responsible for the decision making, especially policy makers. These results show that the introduction of the CMHA have made the field of Dutch mental health an impossible area to work for. , Administrative burden, Legislative amendment, Public governance, Information Management
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Background: A highly promoted opportunity for optimizing healthcare services is to expand the role of nonphysician care providers by care reallocation. Reallocating care from physicians to non-physicians can play an important role in solving systemic healthcare problems such as care delays, hospital overcrowding, long waiting lists, high work pressure and expanding healthcare costs. Dermatological healthcare services, such as the acne care provision, are well suited for exploring the opportunities for care reallocation as many different types of care professionals are involved in the care process. In the Netherlands, acne care is mainly delivered by general practitioners and dermatologists. The Dutch healthcare system also recognizes non-physician care providers, among which dermal therapists and beauticians are the most common professions. However, the role and added value of non-physicians is still unclear. The present study aimed to explore the possibilities for reallocating care to nonphysicians and identify drivers for and barriers to reallocation. Methods: A mixed-method design was used collecting quantitative and qualitative data from representatives of the main 4 Dutch professions providing acne care: dermatologists, GP’s, Dermal therapists and beauticians. Results: A total of 560 questionnaires were completed and 24 semi-structured interviews were conducted. A broad spectrum of non-physician tasks and responsibilities were delineated. Interviewed physicians considered acne as a low-complexity skin condition which made them willing to explore the possibilities for reallocating. A majority of all interviewees saw a key role for non-physicians in counselling and supporting patients during treatment, which they considered an important role for increasing patients’ adherence to proposed treatment regimes, contributing to successful clinical outcome. Also, the amount of time non-physicians spend on patients was experienced as driver for reallocation. Legislation and regulations, uncertainties about the extent of scientific evidence and proper protocols use within the non-physician clinical practice were experienced as barriers influencing the possibilities for reallocation. Conclusions: Delineated roles and drivers demonstrate there is room and potential for reallocation between physicians and non-physicians within acne healthcare, when barriers are adequately addressed.
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Abstract Healthcare organizations operate within a network of governments, insurers, inspection services and other healthcare organizations to provide clients with the best possible care. The parties involved must collaborate and are accountable to each other for the care provided. This has led to a diversity of administrative processes that are supported by a multi-system landscape, resulting in administrative burdens among healthcare professionals. Management methods, such as Enterprise Architecture (EA), should help to develop and manage such landscapes, but they are systematic, while the network of healthcare parties is dynamic. The aim of this research is therefore to develop an EA framework that fits the dynamics of network organizations (such as long-term healthcare). This research proposal outlines the practical and scientific relevance of this research and the proposed method. The current status and next steps are also described.
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