Parents' Experiences of Caring Responsibility for Their Adult Child with Schizophrenia.

Abstract

As a consequence of the latest psychiatry-related reform in Sweden and its implementation, relatives and family members have taken over from the formal healthcare system significant responsibility for the care of persons with a mental disability and illness. The aim of this study was to systematically describe and analyze the experiences of parents' informal care responsibility. The questions were, what are the experiences around parents' informal care activities and responsibilities and how do parents construct and manage their caring responsibility and with what consequences? Semistructured in-depth interviews were conducted (16 hours of recorded material) with eight parents who were all members of the Interest Association for Schizophrenia (Intresseföreningen för Schizofreni (IFS)) in Sweden. A mixed hermeneutic deductive and inductive method was used for the interpretation of the material. The parents endow their informal caring responsibility with meaning of being a good, responsible, and accountable parent with respect to their social context and social relationships as well as with respect to the psychiatric care representatives. In this tense situation, parents compromise between elements of struggle, cooperation, avoidance, and adaption in their interaction with the world outside, meaning the world beyond the care provision for their child, as well as with the world inside themselves.