Background
Schizophrenia, the most common psychotic condition, is a major contributor to global morbidity and is ranked 11th among the top 25 causes of disability worldwide [
1,
2]. The burden of psychosis is considerable and wide ranging, including reduced life expectancy, social exclusion, poor quality of life, and poor physical and emotional health amongst caregivers [
3,
4]. Psychosis has extensive personal and financial consequences for individuals, their families and the economy, estimated at up to 102,396 million dollars nationally per year [
5].
In Indonesia, as in most low and middle income counties (LMICs), mental health systems are struggling to meet the needs of people with psychosis and their surrounding communities; more than 90% of people with mental illness do not get any treatment and Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia worldwide [
6]. This, combined with low mental health literacy (poor knowledge of mental health) and high levels of stigma within the general population has resulted in tens of thousands of people being illegally restrained and/or confined (‘pasung’) in the family home [
7].
Civic engagement, a core part of the recent WHO global strategy, could help to address these challenges [
8]. The World Health Organisation defines civic engagement is ‘a process by which people are enabled to become actively and genuinely involved in defining the issues of concern to them, in making decisions about factors that affect their lives, in formulating and implementing policies, in planning, developing and delivering services and in taking action to active change’. [
9].
Derived from social movements such as the Civil Rights Movement, the benefits of civic engagement have been demonstrated across the world, and include improved access to, and quality of care, increased health literacy, reduced stigma, better outcomes for service users and reduced service costs [
8,
10]. In a health systems context, civic engagement is a ‘bottom-up’ approach in which service users and their families become actively involved in the design and delivery of health services, also known as ‘co-production’ or ‘user involvement’ [
11].
Civic engagement can be enacted at macro, meso and micro levels within a system. For example, through service user membership on national policy committees (macro), user interviewers on clinical recruitment panels (meso) and shared decision-making and joint care planning in routine practice (micro). It recognises lived experience as an important and valuable form of expert knowledge, and so strengthens health systems by using it alongside clinical or scientific expertise in decision making, leading to the development of people-centred services; an ideal for health systems globally [
8].
The transformative impact of civic engagement is evident in the Western world where the move from traditional ‘paternalistic’ approaches towards people-centered models of care has largely been attributed to the survivor/user movement [
12]. It is particularly important in mental health systems, where the social determinants and impacts of mental health problems, frequently prioritised by service users, are often overlooked by professionals due the dominance of clinical models [
13], and where high levels of stigma and coercion mean that the voices of service users and their families often go unheard [
14].
Relationships between people’s contributions to society, civic engagement and the functioning of health institutions have become key areas of theoretical and empirical work within the social sciences. The increased salience of civic engagement within the mental health field has been evident over the last five decades due to a combination of factors including deinstitutionalisation, critiques of traditional biomedical models of psychiatry and a move towards consumerism [
15]. A burgeoning evidence base demonstrates the benefits of patient and public involvement in service planning and delivery both to health institutions and to the individuals they seek to serve [
16]. For example, mental health care plans that have been collaboratively produced between service users and professionals lead to better individual and service level outcomes [
17]. Furthermore, involving service users in the design of mental health care has been shown to improve service development, increase service user confidence and enhance staff attitudes towards service users [
18].
An examination of the extant theory underpinning civic engagement identifies potential mechanisms through which such activities are thought to impact on individual, service and community level outcomes. At an individual level civic engagement is thought to increase mental health literacy and confidence amongst service users which promotes engagement with services and improves health outcomes [
17]. Civic engagement has been shown to improve the health and subsequent quality of life for older people through increased engagement with meaningful activity and increased social interaction [
19]. At a systems level, recognising the importance and value of lived experience, strengthens systemic development, improves staff attitudes and increases service user satisfaction through the development of people-centred services [
15,
20]. System performance can also be increased through enhanced levels of accountability at all levels of the system instigated by civic engagement [
21]. Civic engagement can also reduce stigma and self-stigma within communities by promoting empowerment and social inclusion [
22].
Despite the pervasiveness of person-centred care in the academic, political and policy rhetoric [
23] and research demonstrating the utility of these approaches in improving the quality of mental health care [
20], international literature suggests a sustained failure to effectively implement civic engagement principles within mental health services [
18,
24]. Potential reasons for this failure to translate civic engagement into every day mental health practice include no shared definition of civic engagement, the history of coercion and control within services, finite resources, professional resistance, organisational influences and the on-going stigmatisation of mental health service users [
25‐
27]. Such challenges demonstrate the importance of developing an in-depth understanding of the context in which such activities are to be enacted prior to implementation.
As a rapidly developing LMIC, Indonesia’s mental health system is expanding; mental health is becoming a national priority, whilst at a local level clinicians are starting to set up the first community based mental health services and literacy programmes. This early stage of development presents a unique opportunity for civic engagement to shape and strengthen these emerging systems, and ensure that they are designed around the needs and preferences of the people they aim to serve. Yet civic engagement is an under explored area in Indonesia. This protocol was developed collaboratively with local service users, carers and providers and aims to address the priority areas raised by them.
Theoretical framework
This study will adopt a realist approach, which is a type of theory-driven evaluation set apart by its discrete philosophical underpinnings [
28]. It focuses on four linked concepts: mechanism; context; outcome and context–mechanisms–outcome (CMO) configurations, to examine intervention function and contextual variation in intervention effects, i.e. what works, for whom and under what circumstances [
29,
30]. In a realist analysis, CMO configurations are developed, tested and validated through an iterative process. A realist approach is particularly useful when examining the transfer of complex social interventions, such as civic engagement, to different settings because of its consideration of context and heterogeneity [
28], and has successfully been used in mental health systems previously [
31].
This project will use this theoretical framework to develop causal models (CMO configurations) which will explain the feasibility (i.e. contextual barriers and facilitators), mechanisms, and potential impacts (i.e. outcomes) of civic engagement on Indonesian mental health systems, derived initially from a systematic literature review (phase 1) and then validated/further developed during phases 2–4. For example, phase 2, a social network analysis of the stakeholders and evidence implicated in decision making within Indonesian health systems, will give an overview of the local context and identify opportunities for civic engagement. Interviews with key stakeholders (phase 3) will be used to support, refute or modify CMO configurations identified during phase 1 and develop a culturally appropriate framework for civic engagement in Indonesia. This will then be presented to participants at a series of synthesis workshops where the framework will be further refined (phase 4).
Patient and public involvement
This project was developed in collaboration with our project partner, Komunitas Peduli Skizofrenia Indonesia (KPSI). KPSI is a user-led charity, set up and run by people with a diagnosis of schizophrenia and the family members who care for them.
KPSI and our contacts in community health services at our study sites have identified a group of service users and carers who will act as an advisory group for this project. They will review key documents (e.g. questionnaire and interview schedules) throughout the study and will meet at least three times during the course of the project. A research methods course for service users and carers, was provided to researchers and members of the advisory group in January 2018, and will be supplemented with informal mentorship from the research team. Two members of the advisory group will receive bespoke training in qualitative methods to allow them to contribute to the data analysis in phase 3 of the study.
Discussion
An on going challenge facing mental health services in LMICs is to reduce the burden associated with the experience of mental health conditions. Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. Civic engagement has the potential to address this challenge through the development of person-centred models of care. However, this is an underexplored and under researched area within Indonesia.
This study will use mixed methods, underpinned by a realist approach, to explore the potential of civic engagement to strengthen mental health systems in Indonesia. The results will be used to develop a testable, systems level culturally appropriate civic engagement framework to be used as a mechanism to promote service user and carer involvement in the design and delivery of mental health care and strengthen emerging health systems.
Strengths and limitations
This study gains its strengths from the partnership between UK and Indonesian researchers, from the in-depth nature of its design which incorporates both qualitative and quantitative components and the utilisation of a realist approach to examine the transfer of civic engagement principles to the South-Asian context. Patient and public involvement is also central to the research design and proposed undertaking of the study.
This exploratory study will only recruit participants from two geographical locations within Java (Jakarta and Bogor). It therefore may not be possible to fully transfer findings to participants in other areas of Indonesia.
The application of critical realism in research can be a challenge as there are no strict methodological rules to follow, and a lack of detailed guidance around what a realist approach to data processing and analysis should look like in practice [
46,
49]. Furthermore, development of theory (CMO configurations) can be difficult if there is a lack of relevant research in the area of interest, or if evaluations or descriptions of existing approaches do not explicitly discuss the underlying theory [
49].
Authors’ contributions
HB and KJ are Principal Investigators on the study and led on the preparation of the manuscript. DR, KL, I, BK, EC are co-applicants on the funded project. All authors contributed to the design of the study protocol and approved this manuscript for publication. The University of Liverpool will act as the study sponsor. Principal Investigators will have ultimate authority over all study activities. All authors read and approved the final manuscript.