Accepting that one of the children is different and facing that fact is very challenging for the whole family. Such families experience more stress during transition periods, especially when it comes to transition to adulthood and future planning. Parents as well as siblings worry, face many questions and dilemmas, but only rarely talk about it among themselves. A particular challenge for families with persons with serious mental developmental disorders (hereinafter MDD) is future planning. In this context, siblings often report about lacking information and support.
The goal of this master thesis was to – based on the analysis of the theoretical knowledge and the empirical study – develop a baseline for a help and support program for siblings of persons with serious MDD concerning future planning. The program would empower the siblings while growing up, forming individual personalities and maintaining a healthy relationship to their nuclear families. The empirical part of the thesis includes the analysis of the conditions, needs and desires of the siblings in Slovenia using a descriptive and causal non experimental method. Data were collected by a survey with questions developed by the author of the thesis based on theoretical grounds and in accordance with the study objectives. The study is a qualitative and a quantitative one, done on a non probability sample of siblings of both sexes, ages 19 to 56 (N = 31). The research involved siblings whose brothers and sisters with MDD meet the definition of persons with serious MDD considering their intellectual deficits and level of support, help and guidance. However, not all of them have officially been identified as persons with serious MDD, but in some cases also as persons with moderate or severe MDD.
The results have shown that most of the siblings asses their relationships to brothers and sisters with MDD as positive, meaning that they get along well, they are close and see each other often. In the relationship to their brothers or sisters with MDD, the siblings mostly assume the role of a sibling (usual relationship but often with more responsibility on the sibling’s shoulders), a friend (spending free time together) and a guardian (care and support in everyday activities). However, their roles have changed during their lifetimes due to different factors. The findings suggest that the specific experience of growing up with a brother or a sister with MDD has not influenced each sibling at the same intensity. Overall, the siblings mostly reported about positive influence (maturity and independence, developing tolerance and empathy, accepting differences etc.), but their experiences considering decision making later in life vary considerably. Individually speaking, having a brother or a sister with MDD has had a significant impact on some siblings’ decision making, for others it had only a partial or no impact at all. Most commonly, it affected their choice of partner (60% of the siblings) and their decision concerning their place of residence (48.4% of the siblings). Less commonly, it affected the choice of the university program or occupation (35.5% of the siblings) and least commonly, it affected the decision about having children of their own (22.5% of the siblings). The results show that the future was at least partially discussed within 54.8% of the families and total 25.8% of the siblings believe that their plans for the future are sufficiently specific. In most cases the experts were not included in the planning processes, however, several siblings have expressed their wish or need for it. Also, 77.5% of the siblings have expressed the need for a regulated help and support program. Only three of the participants have reported about having such support, the others not. They would wish for (monthly) semi formal meetings, workshops or individual conversations with the experts as well as regulated psychological or psychotherapeutic assistance. There are only a few high quality programs for siblings in Slovenia, but more than half of the participants have already voluntarily taken part in programs for siblings organized by the Zveza Sožitje association. The participants assessed these programs as very important and necessary.
|