Table 2 Dimensions of social inclusion/ exclusion, sub themes and example quotations

1. Socio cultural

1.1 Explanatory model of mental distress

Family member (64 years, male)

Most of [my wife’s] problems are from the Indonesian occupation

Service provider (41 years, female)

[The woman’s parents] didn’t want to give the medicine to [her] because if she got better another family member might get sick with the same problem.

Decision maker (51 years, male)

Some people who are crazy become normal again when they go back [and tend to] their sacred houses.

1.2 ‘crazy’, Dangerous

Person with mental illness (53 years, female)

Before I took medications, I would just walk around, and just yell, just scream, just swear. And if someone walked by and stared at me, I would just swear at them. And that’s how people around here knew that something was wrong with me.

Family member (42 years, male)

He was very aggressive, he tried to [throw] stones at people, and destroy everything.

Service provider (35 years, female)

The mother [with mental illness] was hitting her stomach when she was pregnant and when the child was born. After one month, the mother was beating [the child].

1.2 Capacity and abilities

Person with mental illness (29 years, female)

Even when I went to Dili [when I was unwell], my brain was still normal. I could still decide what my objectives were and where to go and find a solution. It is just that I felt afraid, felt scared.

Civil society (29 years, female)

People with mental illness have a problem with their mind so everything they do is not right

Decision maker (46 years, male)

People with mental health problems cannot discuss or think properly

1.2 Incurability and shame

Service provider (58 years, male)

Also the majority of the community seems to believe that you can’t heal or treat mental health problems

Civil society (62 years, male)

It could be that the family feel shame, yes. Another thing is that the family believe the illness is from their ancestors, generations, so they think that once [the person] is crazy, it is just going to be like that.

Civil society (30 years, male)

[Having a good image in the community is] such a core of someone’s values and beliefs that it could actually destroy you, the shame [from having mental illness in your family] could actually destroy you

1.3 Altered social roles

Service provider (38 years, female)

Every time she went to her sister’s house they wouldn’t look after her. So she just walked around the streets.

Decision maker (48 years, male)

For example, if there is a crazy person and he is aggressive and destroys things, it means that the family have to look after him every day. He can’t go to work, he is crazy. It will stop the family from doing things, like work.

1.3 Discrimination

Family member (64 years, male)

With the neighbours and the community, sometimes when they come and talk to her, they say something wrong [“crazy”], and she will get angry. But with my children, I always let them know not to do anything that will make her angry.

1.3 Vulnerability

Civil society (42 years, male)

People with mental disabilities [are] very easy for other people to influence, and do other things to them

1.3 Violence

Family member (44 years, male)

[When my wife was sick], she was always arguing and abusing me. […] Once we had a very big argument and she was hitting me and so I hit her and the police came because she was bleeding.

Civil society (42 years, male)

[A man from Liquisa municipality] was killed in Attaby because he destroyed the water pipe, he broke it. So the community – you know, water is very important – so the community were aggressive and they killed him. He was killed on the street.

1.3 Confinement and chaining

Family member (46 years, male)

Man: yes, I chained [my brother] three times. The first was when I was working with the UN so they gave me handcuffs and I put them on him. But after that, he used a saw to cut them. At that time, I was away but when I came back I tied him up again with rope but then he cut it and untied himself. I went to the police and asked for another set of handcuffs to use on him, and then somehow seven or eight months later he cut those too. I went once again to the police and they said, “no more”.

TH: would you prefer to chain him or that he is unchained?

Man: only when he is sick. At the time he always beat my children, and once he was trying to throw a stone at my Mum. And he was trying to kill me, so I decided to chain him up

Civil society (29 years, female)

[People] think that it is better to keep [people with mental illness in the house […] and leave them in the house for the rest of their lives. Because [people] think that if they let [people with mental illness] go, they might cause some problems outside.

Decision maker (46 years, male)

The main cause is shame, when one member of the family has a mental illness, [the family] feel shame, that is why they isolate the [unwell person]. Sometimes they are tied up or far away from home or isolated.

1.4 Acceptance

Person with mental illness (53 years, female)

It is family that is more important to me. Because with family, even if I am sick, they are the ones that will look after me. Because we have problems to face, economical problems, but if I have my family everything is ok. So family is like number one. Because even when I am sick, my family will look after me.

Family member (42 years, male)

People who live in this area are our family … At first when [my sister] got sick, [the community] were afraid of her, but they still looked after her and saw her as a daughter and a relative. When she returned from [the mental health facility in] Laclubar, the doctors said that she has to stay in a quiet place with no distractions. So when people are making noise near our house, our neighbours are the ones who help us to tell those people to stay away or be quiet.

1.4 Recovery

Person with mental illness (36 years, male)

Because when I dance [at Pradet] it reminds me of when I was little, before I used to be involved in dancing and I used to use traditional tais for the dancing.

Decision maker (46 years, male)

Participation [in the community] is just for people who have recovered can participate but those ones that haven’t, cannot.

1.4 Peer support

Person with mental illness (31 years, female)

I don’t talk [about my difficulties] when other people ask me or talk to me about it […] because I am afraid they might break my heart or make me feel bad so I don’t talk to them about it. I am open with my friends [at Pradet], we are open with each other.

2. Economic

Contribution

Family member (60 years, female)

[my daughter has] only [studied until] 6th grade. If she can get better again, then it would be good for her to stay here and help our family with [domestic] work

Civil society (42 years, male)

[Mental illness] destroys the whole family. I’m trying to say that if the head of the family is mentally ill, they have lost the key resources of the family. They lose everything. Particularly for families who are very poor. Unemployment happens, there is nothing there, they only rely on the farm to grow corn of cassava or vegetable so [they] need that person.

Employment

Person with mental illness (53 years, female)

I really like to take medicines [… because] I am doing my sewing again, so I can sell items and get some money [to buy my childrens’ school uniforms] and I also sell stuff to support my community.

Person with mental illness (31 years, female)

I would love to work at an organisation or at the government or in an office[…] I would like to work as a normal person.

Service provider (41 years, male)

[employers] are going to get tired when in the third week the person [with mental illness...] stops turning up to work, or starts shouting at one of the other staff or one of the customers.

3. Political

3.1 Education

Person with mental illness (29 years, male)

After the injections, I seemed to lose my mind. I couldn’t remember things.

Family member (42 years, male)

We [the family] have been thinking about any training that she could get, like training for sewing or to do something but we don’t who we need to contact [to organize this]? We would like her to develop herself. She needs an activity that could help her to think. She couldn’t just sit like this [at home all day].

3.2 Social protection

Family member (46 years, male)

The government gives the subsidy to one of my brother’s [with mental illness], but not my other [brother …] with my brother who gets the subsidy, at the time he was ok with organising all his documents. He was willing to go to the health centre for them to assess whether he has a mental health problem or not. But with my other brother, when we were trying to organise his documents, the health staff required that we bring him to the health clinic so they could assess him, but then my brother didn’t want to go so we couldn’t organise it.

3.3 Legal and political representation

Other community member (46 years, male)

If [the crime] is committed against their own family then it is ok, but if they commit a crime towards other people then sometimes that person wants to put the person with the mental problem in jail. But it is a very hard decision. The law is to put [anyone who commits a crime into jail.

Civil society (29 years, female)

We haven’t had any people who have recovered from their mental illness who want to be involved in the [disability support] group.