Evaluating the acceptability of a co-produced and co-delivered mental health public engagement festival: Mental Health Matters, Jakarta, Indonesia.
ABSTRACT: Background:Public engagement events are an important early strategy in developing a meaningful research agenda, which is more impactful and beneficial to the population. Evidence indicates the potential of such activities to promote mental health literacy. However, this has not yet been explored in Indonesia. Aim:This paper describes a mental health public engagement festival carried out in Indonesia in November 2018 and uses evaluation data to consider the acceptability and use of such activities in Indonesia in the future. Method:Evaluation data was collected from 324 of the 737 people who attended a six-day mental health festival comprising 18 events including public lectures, film screenings, arts activities, exercise classes and panel discussions. Attendees were asked to evaluate the festival in terms of its quality, benefits and areas for improvement. Descriptive statistics were used to analyse the evaluation data. 87 service users, carers, academics and professionals also engaged in a research prioritisation exercise to collaboratively determine mental health research priorities for Indonesia. Results:Participants evaluated the festival extremely positively with a significant majority (92%) rating the quality of the festival as good or excellent. Attendees reported an increase in their understanding of mental health issues and identified intended behaviour change including an increased propensity for future engagement with mental health research. Key strengths of the festival included the central role of patients, carers and the local community in the design and delivery of the festival which promoted emotional engagement and development of shared understanding and the use of international experts which in attendees' opinion further enhanced the credibility of festival activities. Conclusion:This manuscript indicates that a co-produced mental health public engagement festival is a potentially acceptable way to increase awareness of mental health in Indonesian populations. Future festivals should be larger in scope and target men, older people and the general public to maximise benefit and incorporate rigorous evaluation of effectiveness.
Project description:BACKGROUND:Depression and anxiety are two of the leading causes of disease burden in low-to-middle income coutnries. The World Health Organisation has engaged in a programme of scaling-up mental health services, but significant challenges remain. Improving mental health literacy in children and young people, a core part of recent, global health strategies has the potential to address some of these challenges. The study aims to co-develop and feasibility test, a culturally-appropriate toolkit to promote depression and anxiety focused mental health literacy and self-management skills in Indonesia, for children aged 11-15 years. METHODS:A mixed methods study comprising four phases. Through a systematic review of existing evidence, phase 1 will review approaches to improve mental health literacy and self-management in South East Asia and critically review current evidence regarding intervention effect. Phase 2 will explore stakeholders' views on depression, anxiety and mental health more broadly and identify priorities for the intervention through the use of semi-structured interviews and/or focus groups with policy makers, clinicians, teachers, adolescent service users, carers and young people aged 11-15. Phase 3 will comprise iterative workshops with local stakeholders to present our findings and co-produce a testable, culturally appropriate toolkit to promote mental health literacy and depression/anxiety focused self-management in 11-15 year olds in Java, Indonesia. Phase 4 comprises feasibility evaluation of our developed intervention via nine in-depth case studies (Jakarta, Bogor and Magelang). We will examine the impact, acceptability and feasibility of our prototype intervention and produce evidence-based guidelines for wider implementation. DISCUSSION:Tools to support mental health literacy and self-management are a low cost way in which mental health services in LMICs can attempt to address the burden of anxiety and depression amongst children and young people. However, this is an underexplored area in Indonesia. Working closely with local stakeholders, this study will design and undertake feasibility evaluation of co-produced mental health literacy and anxiety and depression focussed interactive self-management tools. This abstract has also been published on the funders website (UK Research and Innovation. Improving Mental Health Literacy Among Young People aged 12-15 years in Indonesia 2019).
Project description:BACKGROUND:The Pint of Science festival is the biggest annual international science festival. In May 2017, we coordinated the first Pint of Science festival in Thailand and reported our initial reflections. Building on this work, we set out to evaluate more systematically events conducted in 2018. METHODS:In 2018, we conducted Pint of Science events at four different locations in Bangkok. Overall, there were 18 talks held over six event-days in 2018. We administered 180 self-reported questionnaires as well as conducted 11 semi-structured interviews and a focus group discussion with audience members and speakers. RESULTS:Of the 180 questionnaires handed out, 125 attendees completed the questionnaire. The majority of attendees came because they were interested in science (68.0%), to learn something new (46.4%) and to enjoy themselves (44.8%). Our qualitative results confirm the quantitative findings. In addition, speakers viewed that they benefited by improving their communication skills and having the opportunity to network with scientists and non-scientists. Speakers also mentioned that such events were a good means to engage with the public, can improve the visibility of their work and potentially attract more funding. To improve the Pint of Science activities, audience members suggested to include a more diverse range of topics, more collaborations with other local research institutions and to hold the event at larger venues. CONCLUSIONS:We conclude that Pint of Science was well received in Bangkok with recommendations to improve minor issues related to practicalities and logistics.
Project description:Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. More than 90% of people with mental illness do not get any treatment and tens of thousands of people with psychosis are illegally detained ('pasung') in the family home. Civic engagement, a core part of the recent World Health Organisation global strategy, has the potential to address some of these challenges through the development of person-centered models of care. The aim of the study is to develop a testable systems level, culturally appropriate, civic engagement framework for use in Jakarta and Bogor, Indonesia to strengthen local mental health services.A mixed methods study underpinned by a realist approach will be undertaken across four phases in two study sites in Indonesia (Jakarta and Bogor). Phase 1 will explore the use of civic engagement across South East Asia by conducting a systematic review of existing evidence. By surveying 300 mental health professionals, phase 2 will identify the stakeholders, the sources of collaboration and the evidence used by professionals in decision making within local mental health systems and identify potential opportunities for civic engagement within the system. In order to explore the potential use of civic engagement within Indonesian mental health services and identify priorities for a culturally appropriate framework, phase 3 will undertake two focus groups with participants with experience of psychosis or caring for someone with psychosis (n?=?20-30). Professionals and other key decision makers in a range of roles across the system at a national (n?=?5) and local level (n?=?10-15/site) will also take part in semi-structured interviews. Phase 4 will co-produce a civic engagement framework for use in Indonesia by synthesising evidence from phases 1-3 collaboratively with key stakeholders.Civic engagement is a potential way in which health services in low and middle income countries can address the burden of mental health conditions through the development of person-centred models of care. However, such approaches are underexplored in Indonesia. This study will work with local stakeholders to design a testable civic engagement framework for use in mental health services in Indonesia.
Project description:<h4>Objectives</h4>To examine in depth carers' views and experiences of the delivery of patient care for people with dementia or delirium in an acute general hospital, in order to evaluate a specialist Medical and Mental Health Unit (MMHU) compared with standard hospital wards. This qualitative study complemented the quantitative findings of a randomised controlled trial.<h4>Design</h4>Qualitative semistructured interviews were conducted with carers of patients with cognitive impairment admitted to hospital over a 4-month period.<h4>Setting</h4>A specialist MMHU was developed in an English National Health Service acute hospital aiming to deliver the best-practice care. Specialist mental health staff were integrated with the ward team. All staff received enhanced training in dementia, delirium and person-centred care. A programme of purposeful therapeutic and leisure activities was introduced. The ward environment was optimised to improve patient orientation and independence. A proactive and inclusive approach to family carers was encouraged.<h4>Participants</h4>40 carers who had been recruited to a randomised controlled trial comparing the MMHU with standard wards.<h4>Results</h4>The main themes identified related closely to family carers' met or unmet expectations and included activities and boredom, staff knowledge, dignity and fundamental care, the ward environment and communication between staff and carers. Carers from MMHU were aware of, and appreciated, improvements relating to activities, the ward environment and staff knowledge and skill in the appropriate management of dementia and delirium. However, communication and engagement of family carers were still perceived as insufficient.<h4>Conclusions</h4>Our data demonstrate the extent to which the MMHU succeeded in its goal of providing the best-practice care and improving carer experience, and where deficiencies remained. Neither setting was perceived as neither wholly good nor wholly bad; however, greater satisfaction (and less dissatisfaction) with care was experienced by carers from MMHU compared with standard care wards.
Project description:AIMS:Planning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey. METHODS:The number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role. RESULTS:In 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1% v. 19.7% of carers) and less likely to assist with practical tasks (64.1% v. 86.6%) and activities of daily living (31.9% v. 48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers - the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0% v. 3.2%), and 35.0% did not know what services were available to them. CONCLUSIONS:Results reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports.
Project description:OBJECTIVES:To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden. DESIGN:Cross-sectional survey. SETTING:All Australian States and Territories. PARTICIPANTS:Responses were received from 231 Australian mental health caregivers. MAIN OUTCOME MEASURES:The Involvement Evaluation Questionnaire was used to assess caregiver burden. RESULTS:Smallest space analysis identified three distinct regions, which we conceptualise as: 1) promoting the safety and health of mental health consumers; 2) impact of caring on caregivers' personal lives and 3) enabling daily living functional recovery of mental health consumers. The analysis demonstrates that carers are most concerned with enabling daily living functional recovery, for which the mean value was considerably higher than the personal impact and promoting safety and health regions. In terms of the individual questionnaire items, the issues of most importance are assisting with self-care, worrying about consumers' future, finances and general health, encouraging consumer involvement in activities and concerns over the treatment consumers are receiving. CONCLUSION:Caregiving often came at significant personal cost. The burden that results from caring for mental health consumers could perhaps be alleviated through the expansion of psychiatric disability services, increasing government financial support and providing tailored psychosocial interventions that meet the needs of families.
Project description:<h4>Objective</h4>To assess the core knowledge of health indicators, federal health programs, and public health functions in practicing clinicians along with perceptions of their education and engagement with public health.<h4>Patients and methods</h4>A paper survey in booklet form was administered to attendees at 2 general medical conferences in May 2019. The survey was divided into 5 sections: knowledge of health systems and policy, knowledge of public health concepts and function, public health engagement, public health education, and demographics.<h4>Results</h4>One hundred two surveys were received from 402 attendees (response rate, 24.3%). Most were male (56%), older than 50 years (51%), and physicians (86%). Respondents had a fairly good knowledge of federal health programs (77%) and public health functions (84%), but less than half had a personal interaction with public health in the past 2 years (45%) or were aware of how to work with public health organizations in their community (46%). Only a few respondents rated their public health training as good or excellent during their primary degree (7%) or graduate medical education (15%), and most (75%) were interested in learning more about public health and health policy.<h4>Conclusion</h4>Respondents had generally good foundational knowledge of federal health programs and public health functions, although some gaps were identified. Inclusion of health policy and public health topics in continuing medical education would be well received by clinicians. To improve collaboration between public health and medicine, public health should personally engage clinicians more and explain how they can work together to improve population health.
Project description:Background:Persons with a diagnosis of severe mental illness have a life expectancy that is 20 years lower than the general population, and they are disproportionately affected by cardiovascular disorders. Improving the management of cardiovascular risk is one of the main challenges for the public health system. In the care pathway of persons with a diagnosis of severe mental illness, a better understanding of limiting and facilitating factors is required. The objective was to include persons with a diagnosis of severe mental illness, carers, and primary and mental health professionals in the creation and evaluation (feasibility) of a health promotion program designed to improve cardiovascular risk management through empowerment. Methods:This study combines a mixed methodology with qualitative and quantitative components. A multicenter prospective qualitative study was conducted in seven mental health units in France and was coordinated by a steering committee composed of persons with a diagnosis of severe mental illness, carers, and primary and mental health professionals. Results:This health promotion program must enable persons with a diagnosis of severe mental illness to assert their right to self-determination and to exercise greater control over their lives, beyond their diagnosis and care. Following a preliminary feasibility study, the effectiveness of this new tool will be evaluated using a randomized controlled trial in a second study. Conclusions:The findings can be used by health organizations as a starting point for developing new and improved services for persons with a diagnosis of severe mental illness.Trial registration Clinical Trials Gov NCT03689296. Date registered September 28, 2018.
Project description:BACKGROUND:Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. OBJECTIVE:Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS:We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. RESULTS:In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. CONCLUSION:A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.
Project description:Background:Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health. Aim:The aim of this study is to describe the creation and formative evaluation of the service user and carer advisory group after a trial period of 12?months. Method:Six individuals were recruited to the group all of whom had personal experience of mental illness. A formative evaluation was conducted after a trial period of 12?months. Results:Evaluation revealed that the group succeeded in promoting dialogue between service users/carers and researchers. Factors that contributed to the success of the group's first year included the opportunity it provided for researchers to involve service users and carers in their projects, the training provided to group members, and the openness of researchers to receiving feedback from the group. Conclusion:The group encourages the incorporation of PPI in data linkage research which helps to ensure the legitimacy of data linkage practices and governance systems whilst also improving the quality and relevance of the research being conducted using linked data.