Connecting care for individuals living with a mental health issue in Indonesia: a grounded theory study

Mental health services are not a priority in the Indonesian health system. Insufficient resources are allocated, resulting in shortfalls in key performance indicators for mental health services. Overall, facilities and human resources are inadequate which means that mental health services do not function at their best. The impact of these inadequacies can be seen when individuals living with a mental health issue experience the 'vicious cycle' of a 'revolving door' between psychiatric institutions and the community. Individuals living with a mental health issue wander on the streets - a visible consequence of an inadequate mental health system. In extreme cases, shackling (or other physical restraint) of individuals living with a mental health issue occurs because the family cannot afford the cost of treatment. To date, there has been little research undertaken in Indonesia that investigates the way in which mental health care is delivered. The aim of this grounded theory study was to generate a theoretical model of collaborative care for individuals living with a mental health issue in Indonesia. The findings will contribute to the evidence base concerning the provision of mental health care in this country. Data were collected during three field trips between 2011 and 2012. Forty-nine participants were interviewed including health professionals and non-health professionals, individuals living with a mental health issue, cadres (a term that in Indonesia refers to mental health volunteers), families and community leaders. The interviews were recorded and transcribed in Indonesian before being analysed using grounded theory methods of concurrent data collection and analysis: initial, intermediate and advanced coding and theoretical sampling. The grounded theory of connecting care for individuals living with a mental health issue explains in part how mental health care is delivered in Indonesia. The core category was connecting care. Three categories were constructed in the development of this theory and these categories are decision-making, shifting responsibility and accepting responsibility. Of these three categories, decision-making was found to be central to the provision of care by health professionals and non-health professionals. Decision-making is characterised by four properties, each one of which influences individual stakeholders to varying degrees. These properties are level of resources; competency of the individual to provide care; willingness to provide care; and compliance with official policies. When making a decision, stakeholders such as doctors, nurses, carers and family members, will either shift responsibility or accept responsibility to provide care. The success and effectiveness of shifting responsibility is largely influenced by the quality of communication between stakeholders. Accepting responsibility is influenced by resources, competency and willingness. The most influential factor for health professionals is following the rules of institutional policy when they make decisions about whether to shift or accept responsibility to provide care. Decision-making for non-health professionals, however, is influenced more heavily by personal circumstances. These circumstances include competence, willingness, resources and compliance with policy. Negotiations between health professionals and non-health professionals about the provision of care can result in either matched or unmatched decision-making. Matched decision-making leads to the unforced acceptance of responsibility and results in optimum health outcomes. Unmatched decision-making can result in health professionals and non-health professionals (especially families) being forced to provide a level of care that exceeds their competency and resources. Unmatched decision-making also results in individuals being forced into psychiatric institutions for unnecessarily long periods of time. Forced acceptance of responsibility leads to adverse health outcomes and can increase the risk of human rights violations and the burden of care. Several recommendations arise from this study. The first recommendation is that the Indonesian Government should establish a mental health act and accompanying regulations to serve as a guideline for all stakeholders who make decisions to shift or accept responsibility for care. The second recommendation is to apply a series of strategies aimed at reducing families’ burden of care. These strategies include providing social networks (groups) for families and providing education for non-health professionals, such as community members, to help them better understand mental health and the needs of consumers. Mental health services, both in psychiatric institutions and in the community, also need to be more accessible to individuals living with a mental health issue and for their families. The provision of financial support for individuals living with a mental health issue and their families is also crucial. The final strategy proposed is that the Indonesian Government provides an increased and adequate number of competent health professionals to meet the needs of individuals living with mental health issues and their families in the community. This grounded theory explains the process of collaborative care for individuals living with a mental health issue. The product of this grounded theory study also can explain the three phenomena that prompted this study: the vicious cycle of the revolving door for people with mental illness, wandering cases and shackling (or other physical restraints). It is hoped that the theory of connecting care can be used as a framework to improve mental health service delivery in Indonesian cities, towns and regions with a subsequent improvement in patient outcomes