Abstract (eng)
Background: There is an estimated total of about 600 million individuals with disabilities worldwide. By far the largest part of these people live in the developing countries. In Austria there are between 40,000 and 110,000 children, adolescents and adults confronted with physical or psychical disabilities or impairment.
Objective: My thesis aims for a better understanding of the situation families with profoundly disabled children or adolescents are confronted with, thereby focusing especially on parents and siblings. While regarding the most relevant publications of the field, my thesis depicts the very particular setting of those affected. Whereas, in recent years, research was stressing almost exclusively the adverse aspects, such as problems, crises, negative impact, and so forth (“disabled families”), current research focuses especially on resource oriented aspects and coping strategies with positive effects. Despite many support measures already established, supervision and care of profoundly disabled children and adolescents remain to be physically and mentally extremely demanding.
Methods: Through extensive research of the existing literature of the field, the every-day coping of families with profoundly disabled youths was investigated. Moreover, three "ero-eptic conversations" with siblings of disabled children were conducted (cf. "ero-eptisch" as defined by Roland Girtler, 2001). These conversations offer insight into the every-day situation of those affected. Even though one cannot draw any generalizing conclusions from these insights.
Results: As relevant studies prove, in many families the birth of a profoundly disabled child, as well as the fostering and nursing of this child, result in very different reactions. Certain filial behavior patterns (confused day-night rhythm, aggression, loud screaming, and so on) mean additional burdens – which often require hospital care. In many cases, therapeutic nursing methods (tube feeding, aspirating, mobility enhancement training, etc.) represent central categories of strain or even stress. As a result, symptoms like the feeling of guilt, insomnia, or social isolation may occur in the parents. Also non-disabled children of the family are influenced by the sibling's profound disability. These ramifications vary between positive and negative consequences. Depending on the individual starting situation in the family, the adjustment of the non-disabled children towards their disabled siblings may be perceived as taking responsibility, feelings of guilt, leisure time, fostering, nursing, etc.
Conclusion: Through a variety of nursing interventions, e.g. special instructions, "information days", and so on, particularly trained personnel like "Family Health Nurses" can help parents and other children of the family to satisfy their needs. Hence, social institutions, hospitals, etc., are required to enhance existing and realize more programs supporting families with disabled children.