The burden of parents caring for their children and adolescents with severe disabilities in South Tyrol

As part of their Master's degree course in Nursing Science at the Private University for Health Sciences, Medical Informatics and Technology (UMIT), the authors carried out a quantitative (written questionnaire) and qualitative (semi-structured interviews) research on parents in South Tyrol caring for their severely handicapped young and adolescent children. The aim of the study was to assess the extent and cause of burden in care-giving parents. The extent of burden was assessed using the the "FaBel"-questionnaire (Impact on Family Scale). Semi-structured interviews were used to investigate the phenomenon of burden in these parents. By triangulation of current literature with the quantitative and qualitative data, an attempt was made to reveal the complexity of the problem. The present contribution is a report on the results of the qualitative part of the study. As shown by the category system of the investigation, families with severely handicapped children and adolescents are exposed to a variety of burden in social (everyday life and public institutions), physical, psychological (impairment of health) as well as financial and emotional (future perspectives) areas. These parents find relief with their own families (partner and children) and public institutions (school, kindergarten, care facilities). Nursing interventions such as schooling, training and empowerment programmes must be adjusted by professional care givers (family health nurse) to the special needs of the care giving parents. Federal, provincial and social institutions should implement and optimise appropriate support possibilities and offers.