Family burden and participation in care. A study of relatives to voluntarily and compulsorily admitted patients

Sammanfattning: Important aspects of family burden, participation in care and needs for support among a total of 422 relatives to severely mentally ill patients, voluntarily and compulsorily admitted to hospital, were investigated in a study performed between 1986-1997. The results showed high levels of both external and internal experienced burden among the relatives. The level of burden remained on an almost equally high level during the period of investigation. Some differences in external burden were found between subgroups of relatives. There was also a high frequency of relatives experiencing mental health problems of their own related to being a relative, and a relationship between the relative’s mental health and experienced family burden. A low frequency of relatives expressed a sufficient participation in the patient’s treatment and a high proportion of relatives experienced needs for care and support from the psychiatric services. The relatives’ needs for support increased during the period of investigation. There were only marginal differences in family burden, participation in care and needs for support between relatives to voluntarily and compulsorily admitted patients. The prevalence of patients with minor children was rather stable throughout the period, but the proportion of patients who had the custody of their children was decreasing. The findings further indicate that the relatives tended to use coping strategies in a pattern similar to a normal population and that the relatives coping strategies were more situational than personality related. The results are discussed in relation to the possibility of applying family burden measure in routine clinical settings and to integrate the family in the care process. It is concluded that further research is needed regarding the role of coercion in family burden and the influence of different treatment approaches on burden. It would also be of future scientific and clinical interest more specifically to identify high-risk groups of patients with regard to family burden, and also to identify high-risk groups of relatives amenable for interventions from the psychiatric services.