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Table 2 Examples of current civic engagement activities in Indonesia as reported by study participants

From: Civic engagement and mental health system strengthening in Indonesia: a qualitative examination of the views of health professionals and national key stakeholders

ID 201In mental health we have involved them [people with lived experience of mental health problems] when constructing the Mental Health Act, and for the Narcotics Act also we had drug users involved and others too.
ID 102So the model we follow is meaningful youth participation. For example if there is a panel about mental health for teenagers that panel should include a teenager, not only the old experts, because [without this] there is a possibility that suggestions made will be biased and irrelevant to today’s circumstances. For example young people can give suggestions for improvements to law, research, questionnaires, and also the improvement of interventions, that is what we try to do in our community.
ID 116As I’ve said, our organization is an advocate group, and this advocation is done by people with mental health problems, so we don’t only accept programs but we also criticize, suggest, make programs better, and advocate for programs that are needed.
IDPeople from the community and us as an organization are advocating seriously to the health authority, and recently the health authority decided to register every person with mental illness, including ones with chronic mental illnesses.
ID103What already happen here is especially in a community like KPSI (Komunitas Peduli Skizofrenia Indonesia/Indonesian Schizophrenic Care Community), Bipolar Group, Substance Abuse Group, and we once asked them to discuss about mental health service like mental health that caused a physical illness like HIV/AIDS, chronic kidney disease, we asked about their hopes and merged it with other stakeholders and psychiatric hospital parters’ hopes in a discussion … … yes, we invite the user too, and stakeholder, partners, citizens, KPSI, Bipolar Care Group, Substance Abuse Group, and a group of people with chronic physical disease. Actually since 2009, we held it every 5 years. For RSMM (Marzuki Mahdi Psychiatric Hospital), we always connected with them to improve our services.
ID203We can see it in communities of people who have experienced it. For example, people with bipolar disorder or schizophrenia would have their own community, and they would engage with people who are healthy to spread awareness and ask for support. So there are now bipolar, schizophrenia, autism communities, those are the concrete examples that the society has done.
ID104In Pacitan, it’s Head is very concern with Pasung so there is a community of patients who have experienced Pasung and they become merchants in the market, every month they have a gathering, traveling together to the beach … .. There was a cooperation with Traditional Medicine Company and we helped it with providing a field and they teach and train them to grow vary of medicinal plants and sell the harvests to the company.
ID105When planning management, I tried to involve family and patients. Sometimes patients are accompanied by Kader, or care givers who are not close relatives. We try to make a plan or I like to call it road to recovery for this patient … … I think the patient is ready to go home then we do discharge planning, and that’s where the patient and family get involved to see what helps recovery to get better when they go home.
For example there is Ms. X who often teaches handicrafts, she will say “can I take the session?” Then I say “oh of course, we can set the time” (105)
There are also families who do have family members with mental health problems, then want to teach others. So he is a caregiver, but he volunteers for others.
ID111There are some custom topics family can choose to adjust with their problems so then there is an engagement from family because they have their own rights, we are not always “feeding” them. And then we also trained them to make their own rules and schedule for patient’s daily activity.
ID109I’m a clinician and I have a direct connection with patient. So when I give nursing care, I’m not just judging for what I’ve found, but I will explore deeper what’s in the family, and make my decision for the right treatment, together designing the nursing planning with patient and family. So we engage them, the patient and family.