Table 2 Quotations reflecting participant experiences
From: Stakeholder perspectives of family interventions for schizophrenia in Indonesia: a qualitative study
Concepts and Illness Models | Stigma and Shame: Self-stigma and Family Stigma “at that time it became more dominant that only the mother continued to talk, if for example she called her child, “My child doesn’t need to be listened to, Mom, he is crazy” like that… so even his own family… his language stigmatizes the same as his family members” N3 “His family paid no special attention, so he was restrained. So the mother restrains her child, the child is not allowed to go out to buy this. So the child is constrained by the mother.” N2 “Most parents feel ashamed because their children are ODGJ so they are locked up like that” N2 “When there’s a family member diagnosed with mental illness or schizophrenia, the family feel worry of becoming the afflicted object of the stigma by the society.” N3 “… the fear of the family’s mental health being affected is very heavy, isn’t it. The first time I cried, ma’am, that time, yes, the first time” K2 Stereotypical Beliefs: Healthcare Professionals “patients who are frequently visited cannot be spoken to… the only ones I talk to are their families, then in my area there are 7 people with ODGJ, and 3 of them have died, only 4 are left, one can be spoken to the patient, the three of them cannot be spoken to…” N4 “The challenges that I imagine is that after the patients recovered……. it is possible that their families will pressure them with lots of new responsibility. In this case, I always remind the families to not force them to do many things at once. Let them progress slowly while continue monitor their medication” N9 Explanatory Models “The health workers in Puskesmas told my child to recite istigfar (seeking forgiveness from God) whenever he gets angry. K9 “We have to remind the patients about our religion so that they remember about God which eventually help them get rid of the hallucination.” K12 Recovery: Support and Inclusion “Yes ma’am, good ma’am for the patient’s own healing process, ma’am. So that he can interact within the midst of society, ma’am” P3 “Family therapy is good, in my opinion, because it can treat families directly and the effect on us is so good. So we can become strong, strong human beings and accepted by society, ma’am” P3 Recovery: Treatment Compliance “The characteristics of Schizophrenia, ma’am, can be cured by taking the right medicine, ma’am” P3 “ I want to give my opinion, ma’am, broadly speaking, this disease can be cured in a fast way, ma’am. As long as you take medication regularly and check with your doctor regularly, ma’am.” P3 “Yes, it is very necessary even though we also often give direction “Mom, actually the child must be corrected, softened” so…” N2 “ the control. but when he is not informed that his recovery is likely he will be negligent, ah lazy to take a lot of medicine like this too.” N7 “taking medicine, now his family because he feels, this family member is already independent, so they forget to control him… forgets to control to check if the medicine has been taken or not…” N3 “the patient at my place in connection with the medicine running out, he will chatter and even throw things, but when we come, then we ask the mother?…Mom why is L getting angry? again…yes the medicine has run out, I haven’t had time to take the medicine…” N7 “ma’am when for example the family can’t listen to us, but usually when something like that happens, for example, the child has a relapse, yes, we remind you, we tell the family this is what, ma’am…what happens if the family also doesn’t care, isn’t obedient, for example….” N3 “I met a family of a patient that said that they cannot force the patient to take medication.” N10 “I think the family plays an important role and have to master the skill of how to communicate with the patients. The families need to talk to the patients calmly and softly. They cannot get angry and stop the patients from talking and sharing their thoughts. And what’s important as well is how the family should remind the patients to take medicine” N9 “We have found some cases of relapsed patients and we observed that it happened because they families are not willing to learn” N14 |
Family | Family: Role in Recovery “To recover, we not only need to take routine medication but we also we need support from parents and family” P2 “Families need to be informed about our mental health condition. Not only me, I need my mom, dad, and siblings to also understand my illness and condition” P5 “I know one patient who depend so much on his family; his parents and his siblings” N11 Collaboration between Families and Healthcare Professionals “usually I and my husband who visit, well, as… I am told to answer this, ma’am….we are asked about my child’s development until what condition… that means about his health development, his sleeping, whether he takes the medicine, that’s it ma’am. Every time we visit, every time I take medicine, once a month.” K2 “I often tell the doctor…(about disturbing behaviour)…But the doctor was silent, so the doctor just gave me a prescription, ma’am.” K1 “I hope that health workers from Puskesmas can visit my house so I can get to know them better” K7 |
Communication | Communication Preferences “They always monitor us by whatsapp” K12 “I think both written and direct communication is good. But the important thing is it has to be done by doctors and nurses and done continually.” P2 Shared Decision-making “I think the family plays an important… And what’s important as well is how the family should remind the patients to take medicine” N9 |
Content | “I wish that I can release my stress and ease my heart after getting this family therapy so that I can continue giving care for my child” K10 “The most important step is the fifth step to make the patients be able to get back together with their family.” K8 “The third step about stress management is the most important one for me. Although the patients may experience relapse, if the carers have a good stress management, I think they can handle the patients and even calm other family members” K7 “Stress management is important because families need to take care of us comprehensively” P3 |
Cultural Norms and Practices | Religious Practices “For me, family therapy teaches (the patient) about prayers, reciting the holy Quran……”“ K1 “Thank God for me Ma’am… I… my family is not stressed. Alhamdulillah, we always believe in Allah, surrender and while getting treatment I said earlier. And thank God my son has recovered… In sha Allah he will recover.” K2 “We, as family who care for the patient, need to have a stable emotion and I will always remember God and recite istigfar (seeking forgiveness from God) when dealing with him.” K7 “The health workers in Puskesmas told my child to recite istigfar (seeking forgiveness from God) whenever he gets angry.” K9 “We have to remind the patients about our religion so that they remember about God which eventually help them get rid of the hallucination.” K12 “Actually, the religious approach is not only for the patients but also for the family. For example, my wife as the carer, staying close to God will automatically release her stress.” K12 “I expect this family intervention to remind me to pray and recite Quran. And maybe to give me some kind of a special attention.” K1 “In order to care for my brother, what I do is, I need to pray more and remember God even more.” K7 “The second thing to do is, we need to teach the patients about religiosity especially if we are Moslem. This will make them remember about God the Creator. With this kind of therapy, the hallucinations will disappear” K12 |
Context and Delivery | Format and Mode of Delivery “The obstacle that I usually find is the denial shown by the families. Some families usually deny that their family members have mental illness, so they refuse the help we offer to them. We offered to give them counselling and teach them stress management, but they didn’t want it.” N17 “In our Puskesmas, we have many programs and none of the programs becomes our focus. I am worried that we might not be able to be consistent in giving the family intervention because we also need to run other programs as well. We also lack health workers if compared to the number of patients so we count on our cadres to help us with our tasks. And they even already have so much to do.” N13 |
Treatment Goals | Family Wellbeing “Family therapy is important for us, family therapy is to change the family’s perspective on things that are negative about mental health. Because families also need information, they need support on how to care for family members who are affected by the disorder. Because when a family member is disturbed, the family doesn’t know what to do. That’s why family therapy is important…” N3 Relapse Prevention “Doing the work of helping my mother at home and outside the house also has to have something to do with it, my relationship with that person, and continuing to take care of my family from what calamity will come to me again, ma’am.” P2 “Yes, I think that therapy is useful so that the patient does not depend on other people. It means that you can be independent here, you can stand on your own… So that the patient knows how this patient lives his life that way, is more useful for society, ma’am, and knows what to do” P6 |