Parents' Experiences of Caring Responsibility for Their Adult Child with Schizophrenia (ACWS)

Abstract

As a consequence of the latest psychiatry-related reform in Sweden and its implementation, related parties and family members have taken over from the healthcare system a large responsibility for the care of persons with a mental disability and illness. The aim of this study was to systematically analyze and describe the experiences of parents’ care responsibility. The questions were: what are the experiences around the parents informal care activities and responsibilities, how do parents construct and manage their caring responsibility and with what consequences? Semi-structured in-depth interviews were conducted (16 h data recorded material) with eight parents who were all members of the Interest Group for Schizophrenia [Intresseföreningen för schizophrenic (IFS)] in Sweden. A deductive hermeneutic method was used for the interpretation of the data material. The parents endow their informal caring responsibility with meaning of being a good parent, responsible and accountable within the context of their personal and social relationships as well as 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 as well as the world inside.

The main conclusions and practical considerations: -It is crucial for the healthcare professionals to be aware of the perspective that reflects the parent’s perspective of informal care responsibility to be able to support and conform care service to the parents. -There is a need for an in-depth debate about the psychiatric care’s responsibility to support the related parties who are informal carers of psychiatric patients. -It is most important to establish a policy for how the psychiatric care is to be divided between the formal and informal care givers.