Introduction. Formal and informal support are important for quality of life of people with disabilities and their families. Objective. The aim of this paper was to (a) identify types of and ...satisfaction with support for Croatian and Serbian people with disabilities (PWD) and their caregivers and (b) summarise the effects of support reported by PWD and/or their caregivers in Croatia and Serbia. Methods. A systematic search was conducted, followed by eligibility screening of the peer-reviewed articles published from 2000 to June 2020. EBSCOhost, Hrčak, and the Serbian Citation Index Srpski Citatni Indeks databases were searched. We also searched the grey literature using Google Scholar and employed backward reference searching. The authors scanned articles and extracted the data related to the country, study's aim, study's design, sample, methodology, and findings. Twenty seven studies were included in this review. Results. Croatian and Serbian PWD and their caregivers received informational, emotional, practical, and financial support at different degrees. They were most satisfied with informal support, while the degree of satisfaction with formal support varied. They highly valued support programs. Conclusion. Croatia and Serbia, in general, lack a formal support system, and informal support is the most prevalent for PWD and their caregivers. There is a need for more support programs for families of PWD.
The aim of this qualitative study is to obtain insight into the experiences of mothers of children with PWS with the formal support system in Croatia. The study was conducted in 2013 with five ...mothers of children with PWS. Thematic analysis was used as the analytic method. The results highlight four major themes related to mothers' experience of accessing and using formal support: professionals' lack of knowledge about PWS results in living without support; professionals' lack of empathy; professionals' commitment to improve the well-being of families; and getting support through membership in the Association of Persons with PWS Croatia. The social support in Croatia is defined by the lack of knowledge and lack of empathy of professionals, which results in disrespect for the human rights and dignity of children with PWS. Raising the awareness about PWS is crucial for improving the quality of life of families living with PWS. Keywords: Mothers of children with PWS, Social services, Health care system, Living with rare disease
Prenatalna izloženost alkoholu jedan je od glavnih preventabilnih uzroka razvojnih teškoća. Konzumiranje alkohola u trudnoći povećava rizik za pojavu širokog raspona poremećaja koji se zajednički ...nazivaju fetalni alkoholni spektar poremećaja. Fetalni alkoholni spektar poremećaja obuhvaća četiri kliničke dijagnoze - fetalni alkoholni sindrom, djelomični fetalni alkoholni sindrom, neurorazvojni poremećaj povezan s alkoholom i urođene mane povezane s alkoholom. Osobe s fetalnim alkoholnim spektrom poremećaja susreću se s različitim izazovima u svom svakodnevnom životu, kao i članovi njihovih obitelji. Cilj ovog preglednog rada je prikazati, sumirati i problematizirati spoznaje vezane uz fetalni alkoholni spektar poremećaja, rizične čimbenike za razvoj fetalnog alkoholnog spektar poremećaja, teškoće, socijalne rizike i socijalne probleme osoba s fetalnim alkoholnim spektrom poremećaja, ali i različite oblike i programe podrške obiteljima osoba s fetalnim alkoholnim spektrom poremećaja. Za zaključiti je kako različiti socijalni rizici i problemi osoba s fetalnim alkoholnim spektrom poremećaja i članova njihovih obitelji generiraju nove i dodatne socijalne rizike i probleme s kojima se susreću te kako je potrebno pružati sveobuhvatnu podršku kako osobama s fetalnim alkoholnim spektrom poremećaja, tako i članovima njihovih obitelji.
Prenatal exposure to alcohol is one of the main preventable causes of developmental disabilities. Alcohol consumption during pregnancy increases the risk for a variety of disorders referred collectively as fetal alcohol spectrum disorder. Four clinical diagnoses are included under the term of fetal alcohol spectrum disorder and those are: fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder, and alcohol-related birth defects. People with fetal alcohol spectrum disorder, as well as their families, face different challenges in their everyday living. The aim of this review paper is to present, summarize and elaborate knowledge about fetal alcohol spectrum disorders, risk factors for the development of fetal alcohol spectrum disorders, difficulties, social risks, and social problems of persons with fetal alcohol spectrum disorders, as well as different forms and programs of support for families of those who deal with fetal alcohol spectrum disorders. It can be concluded that various social risks and problems of individuals with fetal alcohol spectrum disorders and their family members generate new social risks and problems that they face, and that it is necessary to provide comprehensive support to both persons with fetal alcohol spectrum disorders and to their family members.
The aim of the study was to gain insight into some domains of the quality of life of children with epidermolysis bullosa and their parents from perspectives of mothers. Semi-structured interview was ...used as method for data collection with six mothers of children with epidermolysis bullosa. Thematic analysis was a method of analysing data. The results show that the quality of life of parents of children with epidermolysis bullosa is determined by parents´ good health, job satisfaction and received support from different sources, as well as the family’s financial well-being and their limited possibilities of participating in leisure activities. The quality of life of children with epidermolysis bullosa is determined by the children’s affiliation to the community, poorer health condition of children, children’s abilities to perform certain everyday activities, as well as appropriate support from the formal support system. It is clear that this rare disease affects the quality of life of all family members. Families of children with epidermolysis bullosa need informational, practical, emotional, and financial support from informal and formal support system, especially from highly specialized and well networked professionals.
Grandparents of children with developmental disabilities and persons with disabilities are an important source of support for families living with disabilities. The aim of this paper was to present ...knowledge about different types of support that grandparents ofchildren with developmental disabilities andpersons with disabilities provide to families living with disabilities, and to describe the formal support that is crucial for the grandparents. Grandparents provide different types ofemotional, instrumental, informational andpractical support, and in return they require informal and emotional support. The conclusion is that grandparents of children with developmental disabilities and persons with disabilities are an important source of informal support to families with disabilities, but their needs are very often unmet, making them invisible and neglected in the formal support system.
Bake i djedovi djece s teškoćama u razvoju i osoba s invaliditetom predstavljaju važan izvor podrške obiteljima s invaliditetom. Cilj je ovog rada predstaviti, sumirati i problematizirati znanstvene ...spoznaje o oblicima podrške koju bake i djedovi pružaju obiteljima djece s teškoćama u razvoju i osoba s invaliditetom, ali i formalnu podršku koja je njima potrebna. Oni pružaju različite oblike emocionalne, instrumentalne, informacijske i praktične podrške, a rezultat pružanje iste jest da oni sami imaju potrebe za informacijskom i emocionalnom podrškom. Stoga se može zaključiti kako su bake i djedovi važni izvori neformalne podrške obiteljima djece s teškoćama u razvoju i osoba s invaliditetom, dok oni sami često ostaju nevidljivi i zaboravljeni korisnici formalne podrške jer njihove potrebe ostaju nezadovoljene.
Grandparents of children with developmental disabilities and persons with disabilities are an important source of support for families living with disabilities. The aim of this paper was to present knowledge about different types of support that grandparents of children with developmental disabilities and persons with disabilities provide to families living with disabilities, and to describe the formal support that is crucial for the grandparents. Grandparents provide different types of emotional, instrumental, informational and practical support, and in return they require informal and emotional support. The conclusion is that grandparents of children with developmental disabilities and persons with disabilities are an important source of informal support to families with disabilities, but their needs are very often unmet, making them invisible and neglected in the formal support system.
Bake i djedovi djece s tekocama u razvoju i osoba s invaliditetom predstavljaju vaan izvor podrke obiteljima s invaliditetom. Cilj je ovog rada predstaviti, sumirati i problematizirati znanstvene ...spoznaje o oblicima podrke koju bake i djedovi pruaju obiteljima djece s tekocama u razvoju i osoba s invaliditetom, ali i formalnu podrku koja je njima potrebna. Oni pruaju razlicite oblike emocionalne, instrumentalne, informacijske i prakticne podrke, a rezultat pruanje iste jest da oni sami imaju potrebe za informacijskom i emocionalnom podrkom. Stoga se moe zakijuciti kako su bake i djedovi vani izvori neformalne podrke obiteljima djece s tekocama u razvoju i osoba s invaliditetom, dok oni sami cesto ostaju nevidljivi i zaboravljeni korisnici formalne podrke jer njihove potrebe ostaju nezadovoljene. Kljucne r?eci: bake i djedovi djece s tekocama u razvoju i osoba s invaliditetom, neformalna podrka, formalna podrka, potrebe clanova obitelji osoba s invaliditetom Grandparents of children with developmental disabilities and persons with disabilities are an important source of support for families living with disabilities. The aim of this paper was to present knowledge about different types of support that grandparents of children with developmental disabilities and persons with disabilities provide to families living with disabilities, and to describe the formal support that is crucial for the grandparents. Grandparents provide different types of emotional, instrumental, informational and practical support, and in return they require informal and emotional support. The conclusion is that grandparents of children with developmental disabilities and persons with disabilities are an important source of informal support to families with disabilities, but their needs are very often unmet, making them invisible and neglected in the formal support system. Key words: grandparents of children with developmental disabilities and persons with disabilities, formal support, informal support, needs of family members of persons with disabilities
Bake i djedovi djece s teškoćama u razvoju i osoba s invaliditetom predstavljaju važan izvor podrške obiteljima s invaliditetom. Cilj je ovog rada predstaviti, sumirati i problematizirati znanstvene ...spoznaje о oblicima podrške koju bake i djedovi pružaju obiteljima djece s teškoćama u razvoju i osoba s invaliditetom, ali i formalnu podršku koja je njima potrebna. Oni pružaju različite oblike emocionalne, instrumentalne, informacijske i praktične podrške, a rezultat pružanje iste jest da oni sami imaju potrebe za informacijskom i emocionalnom podrškom. Stoga se može zaključiti kako su bake i djedovi važni izvori neformalne podrške obiteljima djece s teškoćama u razvoju i osoba s invaliditetom, dok oni sami često ostaju nevidljivi i zaboravljeni korisnici formalne podrške jer njihove potrebe ostaju nezadovoljene.
PROVIDING SOCIAL SERVICES TO CHILDREN WITH DEVELOPMENTAL DISABILITIES: THE ROLE OF A SOCIAL WORKER EMPLOYED IN A SOCIAL WELFARE INSTITUTION The aim of this paper is to present social worker’s job in ...social facility for children with developmental disabilities. The work of a social worker is described through its parts: work with users, work with user’s families, cooperation with various formal support providers, counselling, and finally social worker as a member of the professional team. These parts of the work are described and problematized. In the last part of this paper, the most common problems faced by social worker in his daily work are problematized. Key words: social work with families of children with developmental disabilities; social work in social facilities; social worker job description
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