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Development of an evidence-informed and codesigned model of support for children of parents with a mental illness— “it takes a village” approach

Providing support to parents and their children to help address the cycle of intergenerational impacts of mental illness and reduce the negative consequences for children is a key focus of selective prevention approaches in public mental health. However, a key issue for children of parents with a mental illness is the lack of access to early intervention and prevention support when needed. They are not easily identifiable (until presenting with significant mental health issues of their own) and not easily accessing the necessary support that address the complex interplay of parental mental illness within families. There are significant barriers to the early identification of these children, particularly for mental health care. Furthermore, there is a lack of collaborative care that might enhance identification as well as offer services and support for these families. The “It takes a Village” project seeks to improve mental health outcomes for children through the co-development, implementation and evaluation of an approach to collaborative practice concerned with the identification of families where a parent has a mental illness, and establishing a service model to promote child-focused support networks in Austria. Here we describe the development of service delivery approach for the “It takes a Village” project that aims to improve identification and support of these children within enhancements of the existing service systems and informal supports. The paper describes the use of codesign and other implementation strategies, applied to a research setting, with the aim of impacting the sustainability of workforce reform to achieve lasting social impact. Results highlight the steps involved in translating evidence-based components, local practice wisdom and lived experience into the “It takes a Village” practice model for Tyrol, Austria. We highlight through this paper how regional context-specific solutions are essential in the redesign of care models that meet the complex needs of children of parents with a mental illness. Service system and policy formation with local and experienced stakeholders are also vital to ensure the solutions are implementation-ready, particularly when introducing new practice models that rely on organizational change and new ways of practice with vulnerable families. This also creates a solid foundation for the evaluation of the “It take a Village” approach for children of parents with a mental illness in Austria

Acceptability, engagement and exploratory outcomes and costs of a co-designed intervention to support children of parents with a mental illness: mixed-methods evaluation and descriptive analysis

Children whose parents have a mental illness are much more likely to experience mental health problems and other adverse long-term impacts. Child-centred psychosocial interventions can be effective, but not much is known about how to design and implement them in different settings. A pre-post, mixed methods, single-arm evaluation of a co-designed social support intervention with parents and children (4–18 years) measured parents' mental health (PHQ-9), perceived social support (ENRICHD), parental self-efficacy (PSAM) and children's mental health (SDQ), quality of life (Kidscreen-27), and child service use (CAMHSRI-EU) at baseline and 6 months. Qualitative data were gathered at 6 months to explore parents' and children's experience with the intervention. Twenty-nine parents and 21 children completed baseline and follow-up questionnaires; 22 parents and 17 children participated in interviews. Parents' depression (MD −1.36, SD 8.08), perceived social support (MD 1, SD 5.91), and children's mental health potentially improved, and children's service use and costs potentially reduced (€224.6 vs. €122.2, MD 112.4). Parental self-efficacy was potentially reduced (MD −0.11, SD 3.33). The sample was too small to perform statistical analysis. Favourable themes emerged describing the high satisfaction with the intervention, parents' improved understanding of the impact of their mental health problems on children, and improvements in parent–child relationships. This study contributes to an emerging evidence base for co-designed child-centred interventions to prevent the transgenerational transmission of poor mental health

Improving identification and child-focused collaborative care for children of parents with a mental illness in Tyrol, Austria

Background: Children of parents with a mental illness (COPMI) are more likely to experience negative long-term adversities. However, interventions to support their needs early can significantly enhance adjustment and reduce negative outcomes. Approximately one in four children currently lives with a parent with mental illness worldwide. The lifelong impact for individuals, governments, and broader society is likely to be substantial. There are significant workforce barriers to the early identification of COPMI and addressing their needs, particularly within the adult mental health care system. The current study aims to reduce such barriers and to improve identification of COPMI in the current health care systems. Objectives: The project The Village is a multidisciplinary health and social care policy intervention and seeks to improve child development and well-being outcomes for children of parents with a diagnosed mental illness. This will be achieved through the co-development, implementation, and evaluation of a practice approach to the early identification and collaborative care for COPMI, through establishing child-focused support networks. This will be done with open innovation science (OIS) approaches engaging the public in Tyrol, a geographical region of Austria, throughout 4 years. As part of the co-development process, we will work with stakeholders to co-develop the practice approaches based on evidence-based approaches and determine the most appropriate study design to evaluate those, as well as the implementation processes we will undertake. Methods: The project is underpinned by theories from different disciplines (i.e., public health, psychology, sociology, linguistics, economic sciences) as well as drawing on different approaches (i.e., co-development, implementation science, symbolic interactionism, and realist evaluation). It is based on the seven content work packages (WPs): 1) management, 2) focusing on children and methods to understand their voice, 3) scoping, 4) co-development, 5) implementation, 6) evaluating the practice approaches, and 7) knowledge dissemination. Scoping will involve exploring the existing evidence, practice, and current state of identification and collaborative care in Tyrol, Austria. Co-development involves the co-design of practice approaches to identify and support children in partnership with key stakeholders and service providers working in Tyrol. The implementation of practice approaches will be based on the results of the co-development phase and will involve working with organizations to develop support strategies that draw on known organizational drivers from the field of implementation science to support the rollout of the practice approaches. In Evaluation we will follow principles of a realist approach; this includes developing program theories and logic models for the practice approaches. Those will set out the outcomes hypothesized to achieve and the processes that are expected to lead to those changes. This will refer to changes in children, parents, and practitioners. We expect that the main focus will be on measuring child quality of life and mental health outcomes, and outcomes that are on the path to those (such as social support needs, resilience, mental health literacy, stigma, and help-seeking behavior) as well as costs. The child voice WP focuses on children\u27s perceptions and needs as the importance of assent and support of children to develop their own voice in health care is increasingly recognized within child health research. The dissemination step focuses on reaching a broad public audience of different stakeholders, researchers, and families involved. Discussion: The research project aims to directly improve identification and support of vulnerable children across selected regions in Tyrol, Austria, and by doing so, improve the health and well-being of future generations, through breaking the cycle of intergenerational transfer of adverse childhood experiences

Practices to support co-design processes: A case-study of co-designing a program for children with parents with a mental health problem in the Austrian region of Tyrol

Forms of collaborative knowledge production, such as community-academic partnerships (CAP), have been increasingly used in health care. However, instructions on how to deliver such processes are lacking. We aim to identify practice ingredients for one element within a CAP, a 6-month co-design process, during which 26 community- and 13 research-partners collaboratively designed an intervention programme for children whose parent have a mental illness. Using 22 published facilitating and hindering factors for CAP as the analytical framework, eight community-partners reflected on the activities which took place during the co-design process. From a qualitative content analysis of the data, we distilled essential practices for each CAP factor. Ten community- and eight research-partners revised the results and co-authored this article. We identified 36 practices across the 22 CAP facilitating or hindering factors. Most practices address more than one factor. Many practices relate to workshop design, facilitation methods, and relationship building. Most practices were identified for facilitating ‘trust among partners’, ‘shared visions, goals and/or missions’, ‘effective/frequent communication’, and ‘well-structured meetings’. Fewer practices were observed for ‘effective conflict resolution’, ‘positive community impact’ and for avoiding ‘excessive funding pressure/control struggles’ and ‘high burden of activities’. Co-designing a programme for mental healthcare is a challenging process that requires skills in process management and communication. We provide practice steps for delivering co-design activities. However, practitioners may have to adapt them to different cultural contexts. Further research is needed to analyse whether co-writing with community-partners results in a better research output and benefits for participants

The European challenges of funding orphan medicinal products

Funding of orphan medicinal products (OMPs) is an increasing challenge in the European Union (EU).To identify the different methods for public funding of OMPs in order to map the availability for rare disease patients, as well as to compare the public expenditures on OMPs in 8 EU member states.Information on the reimbursement status of 83 OMPs was collected in 8 countries by distinguishing standard and special reimbursements. In two consecutive years, the total public expenditures on OMPs were calculated by using annual EUR exchange rates. Annual total public expenditures were calculated per capita, and as a proportion of GDP, total public pharmaceutical and healthcare budgets. Differences between countries were compared by calculating the deviations from the average spending of countries.In 2015 29.4-92.8% of the 83 OMPs were available with any kind of public reimbursement in participant countries including special reimbursement on an individual basis. In Austria, Belgium and France more OMPs were accessible for patients with public reimbursement than in Bulgaria, Czech Republic, Hungary and Poland. Standard reimbursement through retail pharmacies and/or hospitals was applied from 0 to 41% of OMPs. The average annual total public expenditure ranged between 1.4-23.5 €/capita in 2013 and 2014. Higher income countries spent more OMPs in absolute terms. Participant countries spent 0.018-0.066% of their GDPs on funding OMPs. Average expenditures on OMPs were ranged between 2.25-6.51% of the public pharmaceutical budget, and 0.44-0.96% of public healthcare expenditures.Standard and special reimbursement techniques play different roles in participant countries. The number of accessible OMPs indicated an equity gap between Eastern and Western Europe. The spending on OMPs as a proportion of GDP, public pharmaceutical and healthcare expenditure was not higher in lower income countries, which indicates substantial differences in patient access to OMPs in favour of higher-income countries. Equity in access for patients with rare diseases is an important policy objective in each member state of the EU; however, equity in access should be harmonized at the European level

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