Reducing Relapse for People with Schizophrenia in Jakarta, Indonesia: Developing a culturally-relevant, evidence-based Family Intervention

Mental illnesses comprise the single largest source of health-related economic burden worldwide. Schizophrenia is among the most disabling conditions in these low-resource settings and 90% of those who need treatment do not receive it. Consequently, much of the burden of care is transferred to families who have few resources to support them in caring for their loved one. Often, carers lack knowledge and expertise about how to manage and having caring responsibilities significantly affects their own quality of life.

In high-resource settings family interventions (FIp) are provided as a 'talking therapy' for relatives and carers. These types of interventions focus on helping families to cope with illness, learn how to communicate, solve problems and set goals for treatment. Families also find these interventions supportive and reassuring which helps with their own coping and emotions. These interventions are known to be highly effective but they may not translate directly from one culture to another because there are differences in the way people view mental illnesses, how they see and communicate with each other and how treatment is organised.

The aim of this study is to see whether we will be able to tailor an intervention we know is effective in the UK to the needs of people living in Indonesia. To do this, we will ask people in groups what they think of the intervention, about their experiences with getting help and how schizophrenia has affected their lives. We will ask them how they would like to receive the intervention in the future, what aspects are important to include, what type of therapist they would prefer and how and when they would like to receive the intervention. We will then gather a panel of experts to make a final decision about the intervention and ask them what kind of resources they think would help to train people. We will develop a manual to help people who deliver the intervention to deliver these interventions well and we will prepare teaching resources so that in the future, they can teach others to deliver the intervention.

The final part of this work is to train people to deliver the intervention in a primary care setting. A large trial of this intervention would use lots of valuable resources to complete and would not be a good use of resources if we don't know that we can complete the trial. For example, we might not be able to recruit people so before we get to that stage we will do a small trial and see if all the pieces work together, we can recruit everyone we need and collect all the information we need. We also need to make sure that healthcare professionals delivering the intervention can do this with the manual as it is described. We will then need to check with the people who receive the intervention that they like it, whether we could change parts to make it better and whether people delivering it also like it. At the same time, we will be thinking about how this will work in primary care, we will be having conversations with the right people who will use or be affected by our new intervention and we will tell them about what we are doing.

Schizophrenia is among the most disabling conditions in low resource settings and 90% of those who need treatment do not receive it. Consequently, much of the burden of care is transferred to families who often lack knowledge and expertise, support and experience significant impacts on their quality of life.

Family interventions (FIp) are routine psychosocial interventions in high-income settings and have a robust evidence base for their efficacy in reducing relapse, improving functioning and family environment. The aim of this research is to adapt and refine an existing, effective intervention for relatives and carers of people with schizophrenia and test whether it is feasible to conduct a full trial of this intervention and assess acceptability. This study comprises three phases:

In Phase 1 we will conduct stakeholder consultation groups to obtain stakeholder preferences and priorities for content, format and delivery of FIp. We will then explore key informants views on wider implementation within primary care settings to ascertain factors that will assist and hinder intervention implementation during feasibility testing.

In Phase 2, we will convene stakeholder workshops to gain consensus on the intervention components, delivery format and identify the training needs of healthcare professionals. We will present the expert consensus panel with a synthesis of evidence from existing reviews and phase 1 findings and using modified nominal group techniques, we will gain consensus on intervention content, format and delivery. We will develop a manual to support delivery of the intervention and training resources to support sustainable implementation.

In Phase 3, we will evaluate the feasibility and acceptability of delivering culturally-adapted FIp to reduce relapse in people with schizophrenia.

Our aim is to provide evidence to support the process of testing a culturally-adapted intervention in a full trial.

A primary aim of our research is to build research and develop an evidence-based, testable intervention consistent with Indonesia's new mental health policy to provide a minimum standard of health for all through primary care settings. If this intervention is found to be effective, the potential social impacts are substantial in terms of improved health outcomes, wellbeing and quality of life for people with schizophrenia and their carers'. The economic impacts may also be substantial considering that a high proportion of the costs attributable to this mental illness arises from reduced productivity and lost opportunity for carers are forced to care their loved ones rather than maintaining labour force employment.
Our research is mainly exploratory so is not powered to provide evidence of effectiveness, however, there are a number of stakeholders who will directly benefit from this research in determining solutions for meeting policy directives of service provision including the wide network of over 8000 primary care centres throughout Indonesia. In the short-term, we may better understand pathways to care and issues that impact supply and demand by exploring the wider implementation issues which can inform service provision. In the medium to long term, primary care centres, of which less than 20% are considered to have some mental health resources require evidence of effective interventions. We will explore in a preliminary manner, whether there is capacity for delivering culturally-relevant, evidence-based interventions within primary care by utilising trial therapists who have no mental health training and some that do. There will be cross-fertilisation within faculty at UI who deliver nurse training and attempt to provide for healthcare workforce needs.