Ändlös omsorg och utmätt hälsa Föräldraskapets paradoxer när ett vuxet barn har långvarig psykisk sjukdom

Sammanfattning: The overall aim of this thesis was to deepen knowledge of what it means to be a parent of an adult child who suffers from long-term mental illness. Data collection in studies I-III consisted of qualitative interviews with 26 parents. In study I, 16 mothers and, in study II, 10 fathers were interviewed about the way in which their everyday life was affected when an adult child suffers from long-term mental illness. Data were analysed using qualitative content analysis. In study III, the same 26 parents participated as in studies I-II. The aim of the study was to investigate parents’ conceptions of the mental health care. Data were analysed by means of the phenomenographic method. Study IV is based on questionnaires completed by 151 parents. The aim was to investigate mothers’ and fathers’ health related quality of life (HRQOL) focusing on self-rated symptoms of anxiety, depression and burden as well as their experiences of encounters with the mental health services. Data were analysed for the most part by means of non-parametric method.The mothers’ everyday life was characterized by constant preparedness to adapt their life situation to the needs of their child (I). The fathers’ inherent ongoing struggle to ensure the child’s well-being required both strength and courage. Fathers attempted to maintain a good balance in life; this balancing act depended on collaboration between those involved in the child’s life, the family, the healthcare services and other authorities (II). The parents described feeling excluded from professional care and questioned its quality and accessibility (III). Mothers’ self-rated HRQOL was lower and they were also affected by burden and mental ill health to a greater extent than the fathers (IV).The results highlight shortcomings in the interaction between parents and mental health professionals. This highlights the importance of interventions that support and strengthen cooperation between parents and mental health professionals in the care of children who suffer from mental illness.