Supplementary materials to the article submitted to
the Social Psychiatry and Psychiatric Epidemiology
“Experience of stigma in the public life of relatives of people diagnosed with schizophrenia in the Republic of Belarus”
DzmitryKrupchanka1, 4, NinaKruk2, NormanSartorius3, SilviaDavey4, PetrWinkler1,4, and JoannaMurray4
1Department of Social Psychiatry, National Institute of Mental Health, Prague, Czech Republic
2Department of Medical Psychology and Psychotherapy, Grodno State Medical University, Grodno, Belarus
3 Association for the Improvement of Mental Health Programmes, Geneve, Switzerland
4 Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UK
Corresponding author:
Dzmitry Krupchanka,
Tel: +420776215160
E-mail:
Correspondence address: Department of Social Psychiatry, National Institute of Mental Health, Topolová 748, 250 67 Klecany, Czech Republic.
Appendix A. Topic guide for interviewers.
- Social and personal life (friends, neighbours, leisure, holiday, shopping, religious and cultural life);
- Life within a family (attitude towards people living with schizophrenia, relationship with other family members, changes in family after diagnosis, support and conflicts inside of the family);
- Feelings associated with being a relative of people living with schizophrenia;
- First experience of hearing about the diagnosis;
- Education and employment (barriers, deteriorations);
- Finance (problems, income influence, access to loans, welfare payment);
- Experience of contacting both mental and physical health care system (treatment, hospitalization, contact with psychiatrists and other doctors);
- Accommodation issues (deterioration, general conditions, access to basic needs);
- Legal issues, contacts with police (attitude of police, experience of detention, access to mental health care);
- Ways to cope with raised challenges;
- Requests of interventions to reduce burden and improve the situation.
Appendix B. The full list of themes related to stigmatization experience in the public domain of life and supporting citations from respondents’ narratives.
1.1 Associated with mental health care:
1.1.1 Difficulties in contacting mental health professionals and their attitude towards PLS
“When he (son) was hospitalized for the second time, we were allowed to visit him day after day or after two days. He was tied to a bed all the time… and of course it was scary” (Mother,ID1)
“They don’t particularly communicate with you. For example if I visit my doctor – he won’t tell me anything. I think it is likely that he knows nothing. Likely… And doctors are all closed in general…” (Husband,ID11)
(Example of positive and caring attitudes from mental health professionals): “We were just lucky with one doctor. Another would hospitalise and forget, but this woman spoke to her (PLS) carefully, described us how to treat, what to do. After that we remained out of hospitalisations for a long time” (Mother,ID5)
1.1.1 Difficulties getting appropriate information (poor contact with medical specialists; inconsistency of information; lack of information during the initial stage of disorder).
“This nurse told me a lot… I asked her what happens with the body… She answered that these patients were all chronic, and that breakdown of the body happened. It killed me” (Mother,ID12)
“Different doctors said different things” (Mother,ID15)
“Yes, it is such a shock… I didn’t know what to do, how… I don’t know how I got through.” (Father,ID10)
“… there wasn’t any information… this kind of information is usually restricted… I remember: psychiatrist came, wrote an appointment card for the admission to hospital. And that’s all, where else? We hadn’t faced it before. It’s not like cutting an arm or leg. Then it’s understandable where one must go – to a surgeon. But you don’t face mental disorders constantly. That’s why we just didn’t know… at all. We invited a wise woman to get rid of whammy, i.e. self-cure.” (Husband,ID16)
1.1.2 Lack of alternatives to hospital treatment
“I don’t want to hospitalize her, but what else can I do – it is the only option” (Father,ID10)
“Especially when I hospitalize him… After it I go by bus and cry, walk through the city and cry…” (Mother,ID15)
1.1.3 Difficulties during hospital treatment of PLS (long travelling distances, lack of time and space when visiting, difficulties in contacts with medical staff).
“I don’t like that there is always a lack of time… I don’t know what happens to them (patients) for sitting 5 minutes more… They (staff) tried to shout at us because we delayed the appointment” (Son,ID4)
“… when I come, we are sitting with my wife, and a crowd of people is here also… Simply to go out and walk through the corridors… – No, it is forbidden. The doctor doesn’t allow it” (Husband,ID11)
“Actually nobody wants to speak with you there. I went to the head of department; she spoke with me for maybe two minutes” (Mother,ID1)
1.1.4 Absence of alternatives to long-term residential care facilities;
“I don’t want to deprive her of legal capacity, but I have no other choice… I become older, I can get ill, I don’t know what will happen in the future. No, I need to think about her… I understand that I must not limit her, she is a person, but for now it’s impossible without it” (Mother,ID5)
“Well, there is an option – “internat” (long-term residential care facility), but I am scared and very much afraid of it. (…) One may say “What kind of parents are they if they kick out their child to the internat?” Is it shameful? Yes! But I don’t have any another choice. Last year I came to them and wrote an application to the internat but later took it back and didn’t come again. And since then I can’t initiate this again… I don’t want to deprive her of legal capacity, but do I have another choice? I understand that she is a human being and it is wrong to limit her totally, but I it is not allowed to proceed the other way” (Mother,ID20)
“We don’t have any rehabilitation centers where I could come and leave him for a week or so. They could take care of him there, interest him in any way. At the same time, he should be able to leave the place for a while, then come back. I know that if it is mental disorder then rehabilitation is very limited, but at least something may be done, I think! But we do not have anything like this, you know. I have searched a lot in the internet and everywhere, but nothing exist, do you understand?” (Mother,ID19)
1.2 Associated with employment of PLS
“She would like to work and she needs to work, earn more money, but it is not allowed, it is forbidden.”(Nephew,ID17)
“The administration called me and said: "We must exclude him, because he is a radio technic – anything may happen here, so …” He, poor boy, was very upset. He liked it, he studied, and generally he was very active in life. He had many friends there. And then suddenly he was expelled. For him, it was a very big trauma, well, for him and for me, of course. And then he got worse. He was so worried about it.” (Mother,ID15)
1.3 Associated with contacting police
“They (policemen) called my mother “dumb” (Son,ID6)
“They accused us of killing X (PLS) when she disappeared for several days” (Mother,ID5)
“Police suspects X all the time when some crime happened in the district. Once they even arrested him and didn’t allow him to take his medicine during detention, which lead to the deterioration of X’s condition” (Mother,ID15)
2. Strategies that FMs use to cope with stigma
2.1 Resignation and passive acceptance
“You know, no one will help me. I think that what has happened with a child – it's all for our own sins and only we can pray for forgiveness, through our own experience. It just needed to be understood. It is necessary to remember everything that we have done badly and to not repeat it” (Mother,ID1)
“It is too late – I shall bear this cross till the end. What else? It is my fate to be with an ill person, my destiny” (Mother,ID2)
“We have to struggle by ourselves. No one will help.” (Father,ID8)
2.2 Self-reliance
“You know, I just went into myself. And, you know, it was easier for me with no one to talk to. And I just tried anything that I could find: all literature, at least anything. Because when I communicated with other people, unfortunately, many of them reacted either strongly: "Oh what a pity, oh what a pity!!!" or with surprise: "Oh, that's it?!" These two extremes ... But I didn’t want pity but useful information. So it has happened that I was left with much less friends. I still have only those with whom I became really somehow educated” (Mother,ID1).
“Who else may help me? I don’t know any. I don’t ask anyone for additional help. I do everything by myself, and never ask anyone. No one ever helped me. Thankfully they at least provide us with medications for free as they are expensive for us” (Mother,ID3)
2.3 Emotional containment during crises.
“Now I don’t spend time at home as the condition is bad. I try to spend most of my time at work or go to my sister and live there until the condition is improved” (Mother,ID2)
“Sometimes I move to my sister’s and live there for a month or just leave home so not to make the situation worse, not to fight with her” (Son,ID4)
3. Intervention requests
3.1 Passivity in expression and scepticism in expectations
“It cannot be cured. I certainly would like a cure, but it cannot be cured. That's all. What else? Thus we need to struggle by ourselves” (Son,ID4)
3.2 Changes in mental health care service
3.2.1 Alternatives to hospital treatment of PLS AND to psychopharmacological interventions.
“To keep X. under control, do not allow development of a new crisis. Can the crisis be avoided? I do not know, up to now we couldn’t. But logically - she does not need to be in the hospital, because, in principle, in a hospital there it is not a surgery, where everything is sterile. Here all treatment is in the mind, tablets, and injections. If only it would be possible to do it at home, probably a specialized service or a paid family doctor, some fee-based person. Others - I do not know whether this would be allowed or not, but I would pay. I would like to try this way: let’s say, several million rubles (100-200$) to serve 2-3 families. Probably his presence is not necessary on a daily basis, maybe just several times a week. But this person has to be well-prepared and informed, which is not easy taking into account the difficulty of the disorder. Nevertheless, this issue I see somehow like it is in Germany where, first of all, few patients and for each of them – there is a personal nurse or medical specialist – plenty of staff. Therefore, I understand how it should be organized correctly. The state should deal with it, because people today often don’t have money even for medicines.” (Father,ID10)
3.2.2 Alternatives to long-term care facilities and independent living of PLS.
3.3 Assistance in patient’s life
3.3.1 Communication with peers.
“I think he does not have enough communication. I would like for him to have more communications with peers” (Mother,ID1)
3.3.2 Better legal defence.
“Her ex-husband always threatened to put her in hospital, deprive her of legal capacity, remove the children from her parental custody and we always needed to defend her by ourselves. But we often don’t understand how and what to do. I would like it if there were any help” (Mother,ID2)
3.3.3 Assistance in employment.
He needs more attention, to take part in something. May be if there was some kind of special training, education at least something very small and easy and with assistance in employment it would simplify our life.” (Mother,ID19)
Notes: PLS – people living with schizophrenia; FMs – family members.
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