Background
Methods
Study setting and context
Participants
Data collection
Data analysis
Validity checks
Reflexivity
Results
Socio-demographic characteristics
Characteristics | Service users | Caregivers |
---|---|---|
Number of participants | 13 | 10 |
Gender | ||
Male | 8 | 4 |
Female | 5 | 6 |
Age (years) | ||
≤ 25 | 0 | 2 |
25–34 | 2 | 3 |
35–44 | 6 | 0 |
45–59 | 4 | 3 |
60+ | 1 | 2 |
Level of Education | ||
Unable to read or write | 5 | 2 |
Informal education | 3 | 1 |
Primary education | 4 | 5 |
Secondary education | 1 | 0 |
Certificate and above | 0 | 2 |
Religion | ||
Muslim | 5 | 2 |
Orthodox Christian | 8 | 3 |
Protestant Christian | 0 | 5 |
Experience of involvement
PP: There is only nominal participation, the ‘user ‘association is at best promotional and no meaningful attempt is being taken by the Ministry of Health to engage them.
Policy-maker/planner ID3
HCH. We invite for participate the “One to Five” community organization networks to report general health problems; we don't specifically enquire for mental health issues....
Health Centre Head ID1
I: But do you think it is important in any way to involve people with mental health problems in research?
SU: I do think so. I am pleased you are here to listen to what I have to say because most of the time most people are not willing to listen to what we have to say because they believe we are mentally ill. … But it blesses me to have people who listen to my ideas around.
Service user ID
They [researchers] came from Amanuel hospital [the only psychiatric hospital in Ethiopia]. Just like you [the interviewer]. Maybe, you came from the branches… Things move from the stem to the branches. Not from the branches to the stem. People from there will call me here or come to my house for the study. They [the researchers] will discuss many things, though it is not implemented.
Service user ID5
Barriers to involvement
Involvement as an alien concept
Service User (SU): Quality assurance kind of thing is done by higher bodies or by people assigned by the government for this purpose. …
Interviewer (I): So, don’t you think that your participation improves the service delivery?
SU: You [service user] will add nothing, since this [worker] is appointed by the government.
Service user ID5
Policy/planner (PP): I think that's an excellent initiative. I see that it is very difficult to implement that in Ethiopia. I think there's not that type of culture in Ethiopia so I don't know how workable it is. Policy-maker/planner ID6.
Stigma and mental health status
PP: Yes, absolutely stigma is contributing.
I: Within policy-making and planning?
PP: I mean, for me, it is hard to separate anything you know. You are dealing with human beings who are doing the planning; you don’t just put a new hat on when they come here. It is part and parcel of the whole value system. Mental health, mental illness, has been neglected, stigmatized type of diseases and of course, it is the same person who is stigmatizing mental illness who is working in planning…
Policy-maker/planner ID1
Currently, there is no a good thing towards mental health patients in the society, once a person gets sick mentally, the society discriminates and takes that person as useless; they don't think mental health problem can be treated and the patient can be better and live a normal life again.
Health Centre Head ID8
Are you a fool? Only our families know what our problem is, but the others don’t care. ... only you may want to help us or understand what our problem is; otherwise they wish us to disappear …uhh…nobody wants us.
Service user ID10
To negotiate and to participate in planning, he [service user] should be healthy. How can a mentally ill person participate in management activities? Disabled people can do this since they are physically disabled. But mentally ill person faces difficulty on the main part of thinking.
Service user ID5
Lack of resources and empowerment
It is because of our status…are educated and uneducated people equal?
Service user ID12
We never speak for our rights, we have fears...Our fear is…it is difficult to speak about something which the society doesn’t understand and nobody gave us strength to go forward other than giving a small amount of money and other things.Service user ID9
Poor access to mental health care
They [service providers] don't treat mental health patients properly, the ill-treatment and abuse must be corrected, and the people at the health centre must be disciplined in case of mental health patients. They should be caring, should consider the mental health patients just like their children, and loving attitude.
Caregiver ID9
SU. We have a fear.
I. What type of fear?
SU. They (health service officials) use to call us anything and they are trying to help us at least so it is difficult to talk about their deficiencies.
Service user ID10
Potential benefits of involvement
Advocacy, fighting exclusion and improving service quality
We can oversee/push how the allocated budget is spent, whether they [health centre heads] are spending it properly for the intended purpose or not, because we can't be sure unless we participate there.
Caregiver ID6
It [involvement] has a significant impact on the improvement of the service quality and inclusivity, as you know in our country many strategic plans come from above … if you base your planning… the low level, or the users, first of all there will not be any wastage and outflow of resources… if we [Health Centre Heads] involve the patients and their caregivers, in the planning, and even in the future research, then our plans would be very effective and problem solving.
Health Centre Head ID5
Well, I think it [involvement] will be important because it will help people with mental health problems to have control about the quality of service they receive and manoeuvre the way their problem is addressed. It [involvement] can also help protect people with mental health problem from any abuse and maltreatment. Their [service users and caregivers] participation could also mean that the professional can get needed information from them about their need and situation.
Service user ID3
Awareness raising and service promotion
Our[caregiver]contribution will be...we will tell other patients and caregivers to go to hospital...I use to tell everyone to go there and get treatment...there are many people with this problem on the streets and who are walking around...
Caregiver ID8
… if that patient is treated well he will be witness and will publicize positively and propagate the good result of the program to the community, the treated-patients would spread out where they took the medicine and what type of program helped them restore their health. In addition the participation of the patients or their caregivers will be a good source of constructive comments, on the both strength and weakness of the program.
Health Centre Head ID8
Need for capacity building
Enabling community structures and past experience
I: But if that [involving service users and caregivers] were possible, do you think that could be constructive?
PP: Not could be, it should be. Unless you involve the users, unless you involve the beneficiaries, how do you know? For me, it is very, very critical. And some day it is going to come, but it requires awareness, organization and stuff like that. I think it is very important.
Policy-maker/planner ID1
…About HIV, they are doing many things in different organizations, in health facilities and also on media; so, they need to do better than HIV, you know mental illness can be treated like HIV; therefore, it needs everyone's participation.
Service user ID11
Mental health advocacy
We need to educate the families, the caregivers and the community altogether, not to physically and psychologically attack mental health patients. People used to insult, condemn, despise mental health patients, they may be even severely attacked to death, if they leave their village, they cannot participate in a normal social relations, this will aggravate their anger and touches their emotion…
Caregiver ID10
To work with them [service users and caregivers] you have to have better knowledge. This is because they may raise their real experience since they are living with the problem. They may ask you actual issues which they face when they took the medicines. If you can clarify them [what they need] they will build confidence to work with you. You need to know more. The kind of training that helps you [healthcare providers] to work with people and help you to convince others are the important ones.
Health Centre Head ID8
Service user and caregiver mobilization and empowerment
To bring change, we [service users] should get together and discuss about solutions and things which are helpful for us…We should be together, we need to stay together as we couldn’t stand problems related to our sickness, so, we need to organize or we should establish our own unity; we want our health…, they [health service managers] should tell us the rules and regulation from the government and also things we should do not only to oppose their work.
Service user ID10
…In that case my first recommendation even before giving them [service users] financial and any material support is [to] establish a kind of club, where they can discuss together ... then education can be conducted on different subject matters … and in this way we[caregivers] can provoke them[service users]to stand for their right and the rights of patients. In this way we can also reduce the problems…Yes! We need training. We need to know what we have to do, at all level, so that we will have acceptance by the people [community] whom we are going to work together. ... We must know the extent and the limits of our rights and what duties we have to carry out.
Caregiver ID10