Family carers of people with schizophrenia are an important part of the mental health sector landscape, yet there are few studies of representative samples to inform policy and service development. Traditional psychiatric research has investigated carers’ characteristics in relation to the recipients of care, and has paid little attention to aspects of the family caregiver experience other than burden. This crosssectional study describes the experiences of family carers of people with schizophrenia in Wellington, New Zealand, paying attention to their sociodemographic profile, their health, the context within which they provide care and how they cope with and adjust to their situation. There were three areas of investigation, selected on the basis of the literature and a preliminary qualitative study. These areas were the carers’ health status, burden, coping and adaptation; experiences of mental health services; and social support. Family carers of people with schizophrenia wanted their whole experience as carers reflected in the research, rather than simply represented by the extent to which they were not coping or were ill themselves.
Firstly, the study identified a representative sample of 96 carers of people in the Wellington region diagnosed with schizophrenia for between one and six years, and described the socio-demographic profile of both the people with schizophrenia and family carers (93 carers were family members and three had other relationships to the index consumers). Secondly, the health status, psychological adaptation and social experience of the carers were described, with a focus on potential systematic differences between carers of different sexes, socio-economic status, ethnicities and relationships to the index consumer. Data from structured measures of psychosocial characteristics of carers were complemented by responses to additional questions devised for the study.
The study shows that family carers of people with recent-onset schizophrenia in New Zealand are a diverse group with multiple social roles. They rate their own general health as satisfactory, but more commonly have more mental health problems than the general population of New Zealand. There is no sex or ethnic difference in the frequency of current mental health problems among the carers. Rates of hazardous alcohol consumption are the same as for the general New Zealand population. There is also an unmet need for help for carers’ own mental health problems. Their satisfaction with mental health services is high in general, but there is a trend for Māori and Pacific Island carers, and carers with less education, to be less satisfied. Over half of carers are not satisfied with their level of involvement with the mental health service. Parents are dissatisfied in more domains than any other subgroup of carers. Carers’ knowledge of schizophrenia is consistent with the psychiatric illness model. There is some variation between subgroups in attribution of symptoms and behaviours – for example, parents commonly attribute self-harm to personality problems rather than illness, whereas non-parent carers do not. It was surprising that carers did not name illness-monitoring as a prominent aspect of their caring role.
The majority of carers enjoy good social support, but a poor sense of attachment is associated with recent-onset poor mental health as measured by the GHQ-28a. Those who reported positive experiences of care-giving had good social support, a wide repertoire of coping strategies and additional carer roles. Negative experiences of caregiving are associated with inadequate social interaction and enduring poor mental health, and also with involvement in advocacy organisations and greater satisfaction with services. Carers with the widest range of coping styles are those who live with the index consumer. The majority of carers have a high degree of commitment to the caring role, and all carers have experienced some enhancement to their relationship with the care recipient because of the caring role.