Načrtovanje prihodnosti družin oseb s težjimi motnjami v duševnem razvoju z vidika sorojencev - Rozman, Bernarda (2021)
Sprejemanje in soočanje z otrokovo drugačnostjo predstavlja zahtevno preizkušnjo za celotno družino. Dodaten stres v življenja omenjenih družin prinašajo različne tranzicije, posebej tudi prehod v odraslost in načrtovanje prihodnosti. Tako starše kot sorojence skrbi, srečujejo se s številnimi vprašanji, dilemami, a se o tem redko pogovarjajo med seboj. Načrtovanje prihodnosti družine oseb s težjimi motnjami v duševnem razvoju (v nadaljevanju MDR1) postavlja pred poseben izziv. Sorojenci ob tem pogosto poročajo o pomanjkanju informacij in podpore. Cilj magistrskega dela je bil na osnovi analize teoretičnih spoznanj in raziskave oblikovati izhodišča za program podpore in pomoči sorojencem oseb s težjimi MDR na področju načrtovanja prihodnosti, ki bi jih opolnomočil na njihovi poti odraščanja, oblikovanja samostojne osebnosti in ohranjanja zdravega odnosa s primarno družino. V empiričnem delu smo preučevali stanje, potrebe in želje sorojencev v našem prostoru. Uporabljeni sta bili deskriptivna in kavzalno-neeksperimentalna metoda. Podatki so bili pridobljeni s tehniko anketiranja. Vprašanja smo na podlagi teoretičnih izhodišč in v skladu z raziskovalnimi cilji oblikovali sami. Raziskava je kvalitativna in kvantitativna, raziskovali smo na namenskem vzorcu sorojencev obeh spolov, starih od 19 do 56 let (N = 31). V raziskavi so sodelovali sorojenci, katerih bratje in sestre z MDR glede na intelektualne primanjkljaje ter stopnjo podpore, pomoči in vodenja ustrezajo opredelitvi težjih MDR, so pa sicer uradno opredeljeni ne le kot osebe s težjimi MDR, ampak nekateri od njih tudi kot osebe z zmernimi ali težkimi MDR. Rezultati so pokazali, da večina sorojencev svoje odnose z brati in sestrami, ki imajo MDR, ocenjuje pozitivno, torej da se med seboj dobro razumejo, so si blizu in se pogosto srečujejo. V odnosih do bratov ali sester z MDR največkrat prevzemajo vloge sorojenca (običajen odnos, a pogosto prevzemajo več odgovornosti), prijatelja (skupno preživljanje prostega časa) in skrbnika (skrb in podpora pri vsakodnevnih aktivnostih). So se pa njihove vloge tekom življenja zaradi različnih dejavnikov spreminjale. Iz rezultatov lahko sklepamo, da je specifična izkušnja odraščanja ob bratu ali sestri z MDR na vsakega sorojenca vplivala različno intenzivno. Gledano v celoti so sorojenci sicer večinoma navajali predvsem pozitivne vplive (zrelost in samostojnost, razvijanje tolerance, empatije, sprejemanje drugačnosti itd.), kasneje, ob sprejemanju pomembnih življenjskih odločitev pa se njihove izkušnje močno razlikujejo. Individualno gledano je pri nekaterih sorojencih dejstvo, da imajo brata ali sestro z MDR, močno vplivalo na sprejemanje odločitev, pri drugih le delno ali pa sploh ne. Najbolj pogosto, pri 60 % sorojencev, je to vplivalo na izbor življenjskega partnerja, pri 48,4 % sorojencev na odločitev o kraju bivanja, manj pogosto, pri 35,5 % sorojencev, na odločitev o študijski smeri oz. poklica in najmanj pogosto, pri 22,5 % sorojencev, na odločitev o lastnih otrocih. Glede na rezultate so se do sedaj o prihodnosti vsaj malo pogovarjali v družinah 54,8 % sorojencev, skupaj pa 25,8 % sorojencev meni, da so njihovi načrti glede prihodnosti dovolj natančni. Strokovnjaki v procese načrtovanja večinoma niso bili vključeni, je pa več sorojencev izrazilo željo oz. potrebo po tem. Prav tako je 77,5 % sorojencev izrazilo potrebo po sistemsko urejenem programu pomoči in podpore za sorojence, ki je, razen treh sorojencev, niso bili deležni. Želeli bi si (mesečnih) delno formalnih in delno neformalnih pogovornih srečanj s sorojenci, delavnic oz. individualnih pogovorov s strokovnjaki ter urejeno psihološko oz. psihoterapevtsko pomoč. Kvalitetnih programov, ki bi bili specifično namenjeni le sorojencem je sicer v Sloveniji zelo malo, se je pa dobra polovica sodelujočih že prostovoljno udeležila programov, ki jih za sorojence organizira Zveza Sožitje. Programe ocenjujejo kot zelo pomembne in potrebne. 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.