The thesis details the study of the experience of the family of the schizophrenic patient. The primary aim of the research was to develop an understanding of the caregiving role adopted by the family in response to the development of schizophrenia in a family member. The second aim was to use that understanding of the caregiving role to develop an intervention programme that would assist families to cope better with the role.
Reviews of the research literature covered such areas as the development of the concept of schizophrenia in psychiatry, the aetiology of schizophrenia, the deinstitutionalization movement, the studies of expressed emotion, and the studies of the problems of families caring for a schizophrenic family member. This literature review emphasized a growing acceptance of a 11limited illness model" of schizophrenia and a discrediting of the psychogenic theories which have linked family structure and functioning to the emergence of schizophrenia in a family member. With the deinstitutionalization movement, there has been a greater reliance on the family to care for the patient at home, and an increasing recognition of the problems created for the family in this transfer of care from the hospital to the community.
The caregivers of fifty schizophrenic patients treated at an acute psychiatric hospital were studied to obtain descriptive information covering aspects of the caregiving role. Data were collected from both patients and family members during admission and in the three month period following discharge. The study showed that family members accepting the caregiving role included parents, spouses, siblings and children of patients. Caregivers described a range of problems and emotional responses. At initial interview during the patient's admission, problems reported included family disruption and conflict, worry and anxiety, and loss and grief. During the follow-up period problems described included patient passivity and withdrawal, financial problems, family conflict and dealing with difficult behaviours. A small group of caregivers reported no problems.
Data were gathered of the caregiver ratings of patient symptoms and social skills, contact with the treatment team and other supports, and caregiver emotional responses to the caregiving experience. The study showed a low level of contact between the family and the treatment team, with a small group of caregivers having no team contact at all. Analysis of the caregiver emotional responses showed a wide range of responses, with few differences based on caregiver sex or family type. Correlations were found between the extent of caregiver negative emotional response, the caregiver reporting of patient symptoms, and the levels of patient readmission. The caregivers of patients who were readmitted within twelve months of discharge reported higher levels of patient symptoms at follow-up interviews, and higher levels of negative emotional responses.
A model to describe the relationships among level of caregiver reported patient symptoms, caregiver emotional response, patient readmissions, and caregiver supports was developed. The data provided a basis for describing the caregiving role in terms of the instrumental, the cogitive, and the affective components of caregiving.
A literature review of services to families of schizophrenic patients showed trends towards a reliance on a process of collaborating with families in long-term care of the patient, and the use of educational strategies in engaging families in this process. The data from the study of the caregiving experience were used as the basis for the design of a Family Support and Education Programme which sought to educate caregivers on the illness and treatments of schizophrenia, to support the family, and provide skills in the caregiving role.
The Programme was tested with a group of nineteen caregivers using five outcome indicators;- caregiver knowledge of the illness, caregiver positive and negative emotional responses, caregiver rated levels of patient symptoms, and self-reported levels of caregiver support from family and others. Results showed significant improvements in knowledge and emotional responses following the programme, and at a six month follow-up interview. Results were not significant for the two other outcome measures - levels of patient symptoms, and levels of caregiver support.
The research results suggest the need to engage families of schizophrenic patients more fully in comprehensive patient treatment, the value of the programme in enhancing the competence of caregivers, and the need for services to relieve the burden on the caregiver . A model to reframe the concept of Expressed Emotion in terms of emotional distress is offered. The research programme represents an assert ion of the importance of the family of the schizophrenic patient, not only because the family is important to the patient' s welfare, but because the family is important in its own right .