Twelve informal caregivers of people with schizophreniafrom 6 community health service centers in urban districts were selected. Only 10 caregivers were interviewed; and the other 2 declined withno reason. Most caregivers were either spouses (6/10, n=6) or children (3/10, n=3) (see Table 1 for additional characteristics).The average age of the caregivers was 65.43 ± 11.39 years, while the average age of the schizophrenia patients was 47.07 ± 10.45 years. The demographics of the patients and the caregivers are described in Table 1.
Of the 370 questionnaires administered, 363 questionnaires were returned (response rate 98.1%); 7 declined because they did not want to talk about their experiences.The mean age of caregivers was 64.6±11.5 years. More than half of them were aged 61 years and above.About 35.5% of thecaregivers receivedhigh school or higher education.Detailed socio-demographic information of caregivers is described in Table 2.
Qualitative findings
Two dominant themes emerged from the insights ofthe caregivers: the obtained support, and furtherneeds for social support.
The obtained support
Three obtained support subcategories were identified,including financial support, medical support, and information and education support. The caregivers expressed that external financial resources including medical insurance and free medication were provided to alleviate family economic pressure at a certain extent; medical resources from society alleviated the caregiver’s burdens; health education and mutual support groups organized by the community created opportunities for caregivers to communicate with others and help to alleviate the psychological pressure of caregivers. However, these means of support were insufficiently available.
We received 2200RMB subsidies per monthfrom the government. The medicationsand the health examinations for himare free. (Caregiver 1)
If the patient has a sudden relapse, the general practitioners,and our neighbors would help me to preventhis violent behavior and take him to the hospital. (Caregiver 6)
The mutual support group is good, butI have no time to attend. I have to look after thepatient... (Caregiver 10)
Further needs for social support
Threefurther needs for social support subcategorieswere identified,includingmore financial support, being respected, and affordable rehabilitation institutions. Every interviewee hoped that the government could supply more types of free medications and expand health insurance coverage for patients; they indicated that families with schizophrenia patients are more vulnerable to discrimination in China, and hoped to create a non-discriminatory environment around them; and they agreed that more affordable rehabilitation institutions should be opened for schizophrenia patients.
My son does not have a job. Our family depends on my husband’s retirementpension… the treatment fee for the patient is too muchexpensive. We hope to get more free medical service forpatients. (Caregiver 5)
Sometimethey callmy son idiot and even beat him. I hope that schizophrenia patients shouldbe fairly treated. (Caregiver 4)
I heard of Daxing Farming Therapy Base. Patients could do agriculture work or take exercise there.The patients’ daily life was taken care of by doctors and nurses. We would like to take the patient there, but we can’t afford it. (Caregiver 10)
Scale scores
The scale had a mean of 27.33,objective support had a mean of 6.70, subjective support had a mean of 14.56, and support usage had a mean of 6.07.The distribution of SSRS scoreswas shown in Table 3.
Correlation analysis
There was no significant difference between caregivers whether they have religious faith or not (P> 0.05).There were four factors significantly correlated with thetotal SSRS score. Age, education, marital status, and hours for caring patients per day were positively correlated with the total SSRS score.Correlation analysis between SSRS scores (total scores and subscale scores) and general characteristics of caregivers were shown in Table 4.
Ordinal regression analysis
We put gender, age, education, marital status, relationship with patient,main medical payment way,numbers of chronic disease,and hours for caring patients per day into the regression models, with the totalSSRS scores and the three subscale scores being dependent variables,respectively.The results revealed that the main medical payment way in caring for people with schizophrenia were predictor of the SSRS scores.These results are shown in Table 5.
The awareness and utilization status of social support for caregivers
The top three awareness ratesof social support for caregivers werepatients could apply for disability certificate (96.14%),patients could obtain free psychotropic medications (93.66%),and patients could obtain regular medical examination once a year in the community health service center (or station) (90.08%).The top three utilization rateswerepatients could apply for disability certificate (90.08%), patients could obtain free psychotropic medications (83.75%), and patients could use the public transport and visit scenic spots for free (76.58%).More details are shown in Table 6.