Due to its long course and tendency of becoming chronic, patients with schizophrenia are often unable to take care of themselves, and rely on institutional or community resources, as well as main caregivers, for care. The mental health system often focuses its health care mission on alleviating patients’ symptoms, and neglects caregivers’ needs, let alone their quality of life and burden. Therefore, this study aims to understand the need for the quality of life and the burden drawn to caregivers with schizophrenia when they are taking care of the patients.
Methods: This research employed cross-sectional study, and selected caregivers with schizophrenia of home care cases from a psychiatric teaching hospital in central Taiwan as the subjects. A total of 104 caregivers accepted the interview. Structured questionnaire was used as the research tool, and included a questionnaire for the basic information of patients and caregivers, a questionnaire regarding caregivers’
needs triggered by taking care of patients, a world health organization quality of life questionnaire, and a caregiver with mental disorder patient burden scale. Data were analyzed with SPSS/PC 12.0 software for descriptive and inferential statistical analyses.
Results: Among the mental health care service items needed by caregivers, those help needed items with a percentage higher than 80%, including access to clinic or hospital for treatment, designated personnel or unit available to treat patients, professional phone consultation, hospital to accept emergency, assistance provided for managing dangerous behavior, consecutive health care service, medical assistance available from medical unit and convenient transportation. Among the mental health care service items and social care items obtained by caregivers, those items with which caregivers are most unsatisfied with a
percentage higher than 10% include patients’ self-care training, social entertainment, handling money, fixed remuneration employment, employment security, family group assistance, economic assistance and health examination.
The four domains of quality of life cover the physiological domain, environmental domain, social domain, and psychological domain as listed in the sequence from high to low. The average total burden scale for caregivers reads 27.38 points, referring to a medium burden. The burden sub-domains for caregivers as listed from high to low are caregivers’ tension, case subjects’ dependence, family disturbance, stigma and guilt. Regarding the number of service items that caregivers need in terms of comprehensive quality of life and total burden points, this study conducted a regression analysis after controlling the variables of patient characteristic and caregiver respectively. The results indicated that the more number of health care and social care service items needed by caregivers, the lower their synthetic quality of life is and the higher their total burden rating is. After controlling the variables of caregiver, the results indicated that the more number of social care service items needed by caregivers, the higher their synthetic quality of life is and the higher their total burden rating is.
Conclusion: In terms of community rehab organizations, caregivers need day care center, shelter workshop, employment service, recovery home, and community rehab center. Regarding medical organizations, caregivers need enhancement in patients’ self-care training, convenient transportation, assistance in managing patients’ dangerous behavior, designated personnel or unit for consultation and emergency service. Regarding home care in the community, caregivers need services of home cleaning, bathing patients, food delivery, and home respite service. The research result could provide references to mental health systems on medical practice, teaching, research and the alleviation of caregivers’ burden to enhance caregivers’ quality of life in the community.
Keywords: caregiver, caregiver’s need, quality of life, caregiver’s burden
