The results section is structured around the study aims to investigate the following aspects of mental health service user and family participation in policy making in Timor-Leste: (1) current situation, (2) challenges, (3) enabling factors, and (4) suggested future actions (see Table 2).
Experience of participation
None of the mental health service users interviewed had personally participated in policy making. However, decision makers, service providers and civil society members reported that some people with mental health problems and their families participated in the development of the National Mental Health Strategy 2018-2022 alongside inter-ministerial, NGO, civil society and community representatives. One service provider described working with families affected by mental ill-health during consultation for this Strategy in Venilale:
It was really good because all the families came, all the patients came for the duration of the day. We ate together, drank [coffee] together and made decisions together, made the strategic plan together (SP005, 56-60 years, male).
Mental health service users reported participating in several mental health advocacy events in Dili and Venilale, including the annual World Mental Health Day and World Disability Day celebrations. Although these advocacy events were not policy making, service users considered these events to be important occasions for inclusion. One female service user from Venilale relished the opportunity to attend such public events:
I like to go to activities run by the health centre. Normally [the community] go to activities hosted by the administrative leader, [the leader] invites us [me and my family] to come (P007, 36-40 years, female).
Another service user explained that he valued performing in an opening dance at the World Disability Day celebrations in Dili:
I like to dance because when I dance it reminds me of when I was little, before I was sick, and I was involved in dancing with my community (P016, 36-40 years, male).
For many participants, including mental health service users and their families, it was a novel idea that people with mental health problems would be involved in health policy making. Many mental health service users reported that they spent most of their time in and around their homes: “normally, every day I stay at home. When it starts to get hot in the house, I’ll move and sit here [under a tree in the shade]” (P009, 66-70 years, male). As a result, there was a large disconnection between the daily lives of people with mental health problems and the policy making arena, particularly for those who lived in rural areas away from administrative institutions. Participants from other groups were also confused by the suggestion of mental health service user participation in policy making. When asked whether mental health service users had been involved with government decision making, one community member from Venilale responded:
Not yet, they haven’t. But one time I asked the Ministry of Social Solidarity to give rice to the patients (OT005, 66-60 years, male).
Participants across groups explained that national policies should be made by government officials who possessed the requisite technical expertise, not community members. One [participant] stated:
[Policy making is] a technical thing, that [government officials] understand, have the knowledge, and are the ones that need to make the decisions. And there is this understanding that there has to be dissemination at the community level, so [government officials] go and pass the message of the decision that the government has already taken. (OT009, 46-50 years, female)
Part of this technical expertise was related to education. One decision maker explained that people with mental health problems may be able to contribute if they were educated, but otherwise could not:
It depends on the education of the crazy person. If he doesn’t really have enough knowledge then he doesn’t know what to do for the government. (DM001, 51-55 years, male)
Stigmatising beliefs that mental health service users lacked cognitive capacity were a major challenge to their participation in health policy development. Multiple decision makers, service providers and some disability civil society members expressed this idea:
…because policy discussions require thinking (points at head), and people with mental health problems cannot discuss (crosses temple) (DM003, 46-50 years, male).
One male family member couched this lack of capacity in terms of needing to facilitate his wife’s contact with the mental health system:
Being in a family, it is very important that when a husband or a wife has problems with mental illness, their partner supports them. If the medications are not at the health centre, I find it hard to find the medications to give to my wife. These are part of how I support her (FM002, 61-65 years, male).
One disability organisation member stated that the population in general: "don't respect what people with disabilities are thinking" (CS003, 26-30 years, female). One social service provider said that she could not trust people with mental health problems to consistently have the capacity to contribute to health policy development:
(sighs) I don’t know, because sometimes they can talk to us as if they don’t have a mental illness, but other times, everything has changed, and they can't remember us anymore (SP015, 31-35 years, female)
This contrasted with accounts from some mental health service users that they were able to ‘think’ even when they were unwell:
Even when I went to Dili [for treatment when I was unwell], my brain was still normal. I could still decide my own objectives and where to go and find a solution. It was just that I felt afraid, felt scared.” (P012, 26-30 years, female)
Some civil society participants agreed that people who had recovered could participate, however other decision makers and service providers thought that the broader community may still not trust the judgment of people with mental health problems:
Timor is very small, people know each other. If [someone] becomes crazy, even if they become well again, people understand that they have this background of mental illness. The communities understand that sometimes they might become unwell again, so it would be a problem for them to participate. (DM001, 51-55 years, male)
Within the social sector, a strong focus on human rights emerged in the interviews that aligned with the concept of mental health service user and family participation. Multiple participants across groups employed human rights language and cited human rights training they had received from disability organisations. One Ministry of Health representative explained that the ministry began to focus on the social inclusion of people with mental illness: “when we considered that it is a human rights problem, so we have to treat everyone the same" (DM001, 51-55 years, male). A service provider from Venilale referred to common humanity as a reason for improving the lives of people with mental health problems: “People with mental illness are humans like all of us, so they have to enjoy their life.” (SP002, 41-45 years, female)
Social sector participants reported existing structures for representation of people with disabilities in social policy making. The National Disability Strategy and accompanying Action Plan were upheld by several disability sector participants as examples of participation by multiple stakeholders:
[The National Disability Strategy received] really good input from service providers, people with disabilities themselves and their families, and also the UN, agencies, donors (OT002, 31-35 years, female).
A Ministry of Social Solidarity and Inclusion representative confirmed that some people with psychosocial disability were included in this consultation by creating a safe space:
When [people with psychosocial disability] came and gathered with us, we did not see them as a different human being or different from us; nobody said 'that person is crazy', it didn't happen. But I don't know if that happens outside the meeting, in [the person's] house or community, if people are bullying him. (DM009, 46-50 years, male)
Some service providers and civil society participants also described the value of including people with mental health problems in health policy development so they could share their experiences with policy makers. One civil society participant described lived experience of mental illness as a type of expertise in itself:
The government need to include them so that they can present themselves. To say ‘I suffered from mental health problems but I received treatment, and now I am back to being a normal person. Now I am in front of you and I would like to contribute my ideas.’ (CS009, 61-65 years, male)
Several participants across groups suggested ways to increase participation by people with mental health problems and families in health policy making. They first identified a need to raise awareness about mental health to increase participation of people with mental health problems more generally in society. One male family member described how his unwell brother-in-law had received a better reception from the community after community members understood more about his condition.
The community understand him because he has been sick for a long time. [Before] sometimes they came and called him bad words, but then I tell them not to say bad words to him. So all the people here know and understand [our situation]. Sometimes he goes and takes other people’s belongings, and people understand. But sometimes the neighbourhood kids come and annoy him, and I am the one that tells the kids not to do this. (F015, 46-50 years, male)
Multiple participants believed that decision makers from the community to national levels needed increased knowledge and support to facilitate the involvement of people with mental health problems in policy making. One decision maker explained his concerns:
We [the government] would need to have knowledge about how to do this because this is not a normal process. [Based on] if the person is thinking clearly, if they are well or not. We have to think deeply to make political decisions, [so it might be complicated] if we have to bring [people with mental illness] all together to have a discussion. (DM003, 46-50 years, male)
One participant described how local governance structures could be used to support participation by families affected by mental illness across all policies:
[Participation could be promoted] through the community base, through the town chiefs and others to create more awareness [of participation] and to involve them [people with mental health problems]. So that there is leadership at the lowest level, at the village level, from people that [people with mental health problems] feel comfortable approaching. But this is true for all policies that affect them, not just the mental health policy. (OT013, 46-50 years, male)
Several service providers, decision makers and civil society participants said that participation could be facilitated through the establishment of a forum, network or organisation led by people with mental health problems. One disability sector representative explained:
I think a forum would provide that safe space for [people with psychosocial disabilities] to talk about their experiences, among themselves to start with, and then create that confidence to talk about it [more broadly]. (OT002, 31-35 years, female)
This was reflected by one mental health service user who said that she appreciated gathering with fellow mental health service users at NGO, Pradet:
I’m really happy and I like it at Pradet. Before I came to Pradet, I couldn’t remember or talk about anything. But coming to Pradet makes me happy and I start to remember things and talk about things. (P018, 31-35 years, female)
A service provider also recognised that a mental health service user organisation could encourage individuals with mental illness to use their voices:
[There is one mental health service user] who’s at university, yeah but he’s pretty shy and retiring. So while nobody stands out there [advocating], there are a number of fairly good individual stories. (SP009, 66-70 years, female)
Another service provider discussed how such a forum might enable future participation:
I wonder whether you'd need a precursor [to participation...] what may need to come first would be the support groups, the advocacy groups, people who have recovered from mental illness or have a persisting mental illness that they manage [who] might be able to [...] advocate for better rights for mental health patients, better access to services. (SP013, 36-40 years, male)
However, the same disability sector representative quoted above said that civil society representation of people with mental health problems was challenged by a lack of resources to bring mental health service users from all over Timor-Leste together to participate. She also spoke about the potential challenge of gatekeeping by families:
So I think the challenge is getting the clients [to come together], and their families to want to allow them to be part of this. (OT002, 31-35 years, female)