Background
Methods
Study setting and participant
Patient | Family member | |
---|---|---|
Age, year (mean, SD) | 46.1 (13.5) | 60 (10.4) |
Range (age) | 28–69 | 35–81 |
Female (n, %) | 4 (36.4%) | 12 (57.1%) |
Duration of illness, year (mean, SD) | 17.4 (11.0) | – |
Education (n, %) | ||
Uneducated | 2 (18.1%) | 7 (33.3%) |
Primary school education | 4 (36.4%) | 7 (33.3%) |
Junior middle school education | 4 (36.4%) | 5 (23.8%) |
High school degree or above | 1 (9.1%) | 2 (9.6%) |
Marital status (n, %) | ||
Married | 6 (54.5%) | 21 (100%) |
Single | 4 (36.4%) | – |
Divorced | 1 (9.1%) | – |
Living condition (n, %) | ||
Living with others | 10 (90.9%) | – |
Living alone | 1 (9.1%) | – |
Diagnosis (n, %) | ||
Schizophrenia | 8 (72.7%) | – |
Depression | 2 (18.2%) | – |
Bipolar disorder | 1 (9.1%) | – |
Data collection
Data analysis
Results
Key themes
Lack of self-insight
Before, we couldn’t control (him). He always threw the bowl on the ground when we tried to give him the drugs. Never admitted he was ill. Sometimes he said: “I’m not ill! Why would I be ill!! I AM NOT!! You can go to the hospital if you want. I don’t want to be hospitalized!” (Family Member 16, 65 years)
I hated the medicine when I was younger. Why would I need it when I am ok? (Patient 04, 28 year)
On the other hand, some patients might be depressed, anxious and angry at the time of onset, it would be difficult to control their behaviors in such states, so they were less likely to take drugs on time.If a doctor gives him the medicine and watches him, he takes it. But at home, he refuses the med we give him. He thinks he is perfectly healthy. (Family Member 10, 53 years)
I don’t know it when I lose my consciousness. I don’t know if I should take the meds or not. I just don’t have consciousness of what I’m doing. (Patient 05, 44 years)
I usually take drugs on time. But can’t control myself when I have an attack. Can’t remember to take them. (Patient 11, 37 years)
Sometimes it’s not that she forgets things. Sometimes we want her to take the meds and she’s not stable. So she doesn’t take it. (Family Member 25, 48 years)
Inadequate family support
I saw that he (the patient) took only one drug at the hospital and took 3 drugs after back at home. But he doesn’t take it if no one is watching. (Family Member 11, 56 years)
Some patients were in their youth when they were ill. They were supposed to provide financial income for their families, especially in rural China and needed to go to work. However, since the side effects of taking drugs, such as fatigue and sleepiness, would affect their normal work, their family may intervene or even stop those patients’ taking their medicine.(The patient) hasn’t taken the meds. His two children are not home. Who should feed him? (This patient has never taken any medication) (Family Member 28, 60 years)
At home we can’t be as attentive as when they are at the hospital. We expect him to help with the farming, so we don’t give him the meds in the morning, otherwise he might not be able to work. (Family Member 16, 65 years)
Family members of patients had to go to the fields to cultivate, and sometimes the patient was left alone at home. Because family members work in farming for most of the day, it is difficult for them to regularly remind patients to take their medicine, which can lead to reduced medication compliance.I find in my follow-up visits that they have something in common. When they’re at the hospital and accompanied by professionals, they take the medicine regularly. But things are bound to change when they return home. Last Friday I visited one patient at his home. He’s got mania but he’s the main labor force of the family. The family is raising many pigs. When he takes the meds, he’s very sleepy and cannot help with the work. So his family cut down on his meds and sometimes even doesn’t give him the meds. (Medical Staff at Nigou Town, 40 years)
I usually put the medicine on the table before I go out (to the fields) and come back to see if she’s taken it. If not, I watch her take it. If she refuses, I make her do it. (Family Member 31, 69 years)
Long treatment duration and side effects of drugs
The reason of stopping the medicines could be that she is sick of the whole thing, taking the medicine every day, was uncomfortable and doesn’t want the meds. (Family Member 14, 46 years)
Many patients mentioned that they would have some uncomfortable symptoms after taking the medicine. For example, after taking drugs, patients might become sleepy and have dry mouth, blurred vision` and other symptoms, which could affect their normal life, especially when the symptoms were serious.It might be that the treatment has been too long. He’s got tired of it and doesn’t want to take the meds any more. (Family Member 12, 63 years)
Sometimes I don’t feel well after take medicine. I can’t express how uncomfortable I felt after I took the medicine, Sometimes I feel dizzy. I don’t want to take medicine. (Patient 07, 61 years)
There are also personal reasons (for not taking medicines). If he doesn’t feel well after taking the meds, he secretly stops it. (Mental Health Worker at Nigou Town, 40 years)
Economic conditions discouraging them from purchasing medicine
How could he afford it? He doesn’t even have basic living allowance. He’s spent all his money to treat this disease. That treatment in Beijing alone costed over 30000 yuan (about $4500). The medicines are all very expensive. The medicines bought in Beijing were over 100 yuan (about $14) each package! Couldn’t afford the expensive medicines so he bought cheap ones. Last year he applied for the basic living allowance but didn’t get it. He’s only 15 or 16 years old. Poor child! And he couldn’t even get the allowance. (Family Member 18, 57 years)
Similarly, some patients mentioned that the diseases had caused a heavy financial burden. They had to stop taking medicine, or chose to take medicine when their condition was serious, but stop taking medicine after their condition had been alleviated.Some have poor economic conditions. If they don’t have basic living allowances or for some other economic reasons, they might stop the medicines. (Mental health worker at Zhangjiawa town, 50 years)
The treatment alone was over 8000 yuan (about $1126) and there were other fees too. We could no longer afford it so we didn’t get further treatment. (Family Member 20, 74 years)
I couldn’t afford it all and bought some medicines. They didn’t last long. When I were having an attack later, I couldn’t even have meds. (Patient 11, 37 years)
The perceived stigma of illness
He’d throw away the meds secretly. He wouldn’t take the name of a “mental” from others. He’d punch them. (Family Member 10, 53 years)
Some patients were in the age of getting marriage or getting a job. Having a mental disorder was believed to have a great impact on their interpersonal interaction. Therefore, they refused to take medicine, hoping to hide their mental disorder from others.Some patients are resistant to their diseases and can easily get irritated if they hear people talk about them. And some family members lock the patients inside the houses when they go to the fields, even though the condition of patients is not that serious. But the family members cannot put their minds at ease if not locking the patients. They fear the patients might go out and get into trouble. And being locked in also irritates the patients. It’s not good for their recovery. (Mental Health Worker at Xiji Town, 39 years)
I’m so worried that my boyfriend might leave me because of the disease. I used to be into my looks but now I don’t even want to wash my face. I don’t want to go out. (Patient 05, 44 years)