Everyday life experiences among relatives of persons with mental disabilities

Abstract: This thesis, which consists of two articles and a policy analysis of the document SOU (Swedish Government Official Report), laying the ground for psychiatric reform, deals with everyday life experiences among 18 close relatives of persons with mental disabilities. This study was conducted among relatives of people with mental illness within a health care district in Northern Sweden. Relatives living in the community were recruited through advertisements in daily newspapers. The criterion for participation in the study was that the interviewees should be close relatives of persons with mental illness. This is an explorative, descriptive study using inductive qualitative content analysis of individual interviews with relatives of people with mental disabilities. The interviews focused on experiences of communicating with persons with mental disabilities in daily life situations. Articles I and II were analysed by means of qualitative content analysis. In order to deepen the understanding of the relatives’ situation and the consequences of the psychiatry reform, I put the relatives’ statements in a concluding dialogue in dialogue with an analysis of the policy documents that form the basis of the psychiatry reform. The overall aim was to illuminate and understand what the reform of psychiatric care in Sweden has meant for Swedish relatives of persons with mental disabilities in the light of the content of the Swedish psychiatry reform and its policy documents. Mental disability is one of the most serious health problems facing Europe today. For example, statistics reveal that between 20 and 40 percent of the Swedish population suffer from some forms of mental disease, ranging from grave psychoses to less serious anxiety and fear. The reform of psychiatric care in Sweden has passed much of the rehabilitation and daily care of these people on to their families. The results indicate that they feel guilty about not providing enough support for their relatives, whom they perceive to be in a vulnerable position. Family members wanted to be supportive, but felt that they also needed support in the form of better information, consistency throughout the various levels of care, and professional therapy for themselves as well. The result of this study shows that children of parents with mental disabilities want assistance, opportunities for participation in care, and information about their parents’ illness. Relatives feel that they need a kinder reception from the health care system, which should take better care of the whole family. All relatives could relate positive experiences, through open dialogue and relevant information gained from the staff in the hospital, related to timely care and support from care personnel The result indicates that the reform of psychiatric care in Sweden has put the light on the relatives, but for the relatives there is still no consensus among the different care providers, county municipal, and national social services who are involved in treatment.