Perspectives of mothers on the quality of life of children with epidermolysis bullosa and their parent

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

PROSLAVA 70 GODINA STUDIJSKOG CENTRA SOCIJALNOG RADA PRAVNOG FAKULTETA SVEUČILIŠTA U ZAGREBU

Sažetak sa skup

Grandparents of children with developmental disabilities and 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 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

The Institutionalization of People With Intellectual Disabilities: What Have We Learned From History?

Cilj je ovog rada prikazati povijest institucionalizacije osoba s intelektualnim teškoćama, prvenstveno u SAD-u, Ujedinjenom Kraljevstvu i Njemačkoj, državama čije su socijalne politike služile kao model drugim državama svijeta. U prvom dijelu rada prikazat će se poimanja uzroka intelektualnih teškoća, klasifikacije osoba i svrha institucionalizacije u razdoblju od srednjeg vijeka do početaka deinstitucionalizacije. Svrha institucionalizacije prikazana je kroz zaštitu osoba s intelektualnim teškoćama i zaštitu društva od osoba s intelektualnim teškoćama. U drugom su dijelu raspravljeni obrazovanje, rad i sterilizacija kao važne odrednice života osoba s intelektualnim teškoćama u ustanovama, osnovne odrednice institucionalizacije u Hrvatskoj kroz povijest i temeljne postavke početaka deinstitucionalizacije u svijetu. Na kraju će se pokušati ponuditi odgovor što se promijenilo kroz povijest kada je riječ o institucionalizaciji osoba s intelektualnim teškoćama kao mjeri socijalne politike. Može se zaključiti da, iako suvremeni trendovi deinstitucionalizacije osiguravaju napredak u skrbi o osobama s intelektualnim teškoćama, postavke institucionalizacije su minimalno promijenjene kroz povijest.The aim of this paper is to present the history of the people with intellectual disabilities\u27 institutionalization, primarily in the USA, United Kingdom, and Germany, countries whose social policies were used as the role model for social policy in many other countries. The first part of the paper will provide information about the causes of intellectual disabilities, different classification of people and the purpose of the institutionalization in the period from the Middle Ages until the beginning of deinstitutionalization. The purpose of the institutionalization will be presented as the protection of people with intellectual disabilities and the protection of society from people with intellectual disabilities. Some aspects of education, labor and sterilization as important determinants of people with intellectual disabilities’ life in institutions, basic aspects of history of institutionalization in Croatia and some information about the deinstitutionalization in the world are going to be presented in the second part of the paper. In the final part of the paper the answers about what has been changed during the history when it comes to the institutionalization of people with intellectual disabilities as a measure of social policy are going to be presented. The conclusion is that although the modern trends of deinstitutionalization ensure progress in the care of people with intellectual disabilities, many aspects of the institutionalization have been minimally changed during history

PROVIDING SOCIAL SERVICES TO CHILDREN WITH DEVELOPMENTAL DISABILITIES: THE ROLE OF A SOCIAL WORKER EMPLOYED IN A SOCIAL WELFARE INSTITUTION

Cilj ovog rada je prikazati i detaljno opisati posao socijalnog radnika zaposlenog u ustanovi socijalne skrbi u kojoj se pružaju socijalne usluge djeci s teškoćama u razvoju. Posao socijalnog radnika opisan je kroz njegove dijelove: rad s korisnicima, rad s obiteljima korisnika, suradnja s različitim pružateljima formalne podrške, savjetovanje te, naposljetku, socijalni radnik kao član stručnog tima. Navedeni dijelovi posla su opisani i problematizirani, dok se u posljednjem dijelu rada problematiziraju najčešći problemi s kojima se socijalni radnik susreće u svom djelovanjuThe 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

"They Used to Tell me That I\u27m no Better Than My Son"-Family Stigma Based on Intellectual Disability of a Family Member

Rad se bavi stigmom obitelji temeljem intelektualnih teškoća člana obitelji. Cilj ovog istraživanja bio je dobiti uvid u perspektive članova uže obitelji osoba s različitim stupnjem intelektualnih teškoća o stigmi obitelji temeljem intelektualnih teškoća. Istraživačko pitanje bilo je: „Kako članovi obitelji osoba s intelektualnim teškoćama doživljavaju stigmu obitelji?“. Sudionici istraživanja bile se 22 osobe koje su članovi uže obitelji osoba s različitim stupnjem intelektualnih teškoća (10 majki, 3 oca, 2 sestre, 5 braće, 1 baka i 1 djed). Svi žive na području Grada Zagreba. Članovi njihovih obitelji s intelektualnim teškoćama su članovi ili korisnici udruga ili ustanova za osobe s intelektualnim teškoćama. U istraživanju se koristio kvalitativni pristup i metoda polustrukturiranog intervjua. Podaci su obrađeni interpretativnom fenomenološkom analizom. Dobiveni rezultati upućuju na stigmu obitelji koja se očituje kao: sažaljenje, okrivljavanje majki, braća i sestre koji trebaju preuzeti skrb za člana s intelektualnim teškoćama, omalovažavanje članova obitelji zbog člana s intelektualnim teškoćama, diskriminacija na radnom mjestu majki te život članova obitelji u izolaciji. Dobiveni rezultati su u skladu s ranijim istraživanjima s određenim specifičnostima upravo ovog istraživanja koje se odnose na gubitak statusa u društvu svih članova obitelji i umanjivanje njihove vrijednosti u socijalnim interakcijama. Za zaključiti je da stigma obitelji oblik boli i samoće.This paper is about family stigma arising from the intellectual disability of a family member. The aim of this study was to obtain insight into the perspectives of family members of people with various types of intellectual disabilities about family stigma. The research question was ˈHow do family members of people with intellectual disabilities experience family stigma?ˈ This study was conducted on a purposive sample of 22 family members of people with different types of intellectual disability (10 mothers, three fathers, two sisters, five brothers, one grandmother and one grandfather). At the time of the study, they were all living in Zagreb, and their family members with intellectual disabilities were members of different associations or institutions for people with intellectual disabilities. The semi-structured interview was the method in this qualitative research. Interpretative phenomenological analysis was used as the data analysis method. The findings about family stigma indicated pity, mothers being blamed, imposed expectations and responsibilities on brothers and sisters, devaluation of the person based on having a family member with intellectual disability, work discrimination of mothers who have children with intellectual disability, and isolation. These results confirm earlier findings from different studies about the family stigma of intellectual disability, specifically with respect to loss of status in society and social devaluation of the family. Family stigma due to intellectual disability results in feelings of loneliness and emotional pain

Visibility of physical impairment in social interactions

Odnos prema osobama s invaliditetom doživio je duboku i široku transformaciju na bolje u relativno kratkom vremenu. Od duboke i intenzivne segregacije, zbog čega su mnoge osobe nerijetko čitav život provodile u domovima svojih obitelji, daleko od očiju javnosti, do mnogo prihvatljivijeg ponašanja prema njima u suvremenosti. Odnos prema osobama s invaliditetom temeljem njihova izgleda jedan je od tradicionalnih izvora segregacije, u mnogomu prisutan još i danas. U ovom se članku želi ukazati na to, kako taj odnos nije rezultat “nekulturnog” ponašanja pojedinaca, koji segregiraju “stigmatizirane” pojedince, već je rezultat u kulturi duboko ukorijenjenih stavova ili “kriterija” za procjenjivanje lijepog i njegovo odvajanje od manje lijepog ili nelijepog. To je zapravo socijalni konstrukt jednog dijela naše stvarnosti, koji se prenosi socijalizacijskim procesima iz generacije u generaciju.Attitudes toward people with visible disabilities have been changed for the better during last decades. They have been changed from intensive segregation which result was that people with disabilities had spent their entire life in their homes totally socially excluded to the much better social status in the present time. Relation toward people with disabilities that results in their segregation is often based on their physical look and still exists in the society. The aim of this article is to show that this kind of relation is not the result of the impolite and rude behavior but is the result of deep-seated cultural attitudes or criteria that separate something what is beautiful from the less beautiful or even what is estimated ugly. It is social construct of our reality which is transmitted through socialization from generation to generation

TERMINATION OF SECONDARY EDUCATION IN YOUNG PEOPLE WITH DEVELOPMENTAL DISABILITIES

Prekid srednjoškolskog obrazovanja mladih s teškoćama u razvoju predstavlja nedovoljno prepoznati socijalni rizik u suvremenom društvu, koji često ostaje neprimjetan zbog proklamirane obrazovne inkluzije. Ovim radom želi se opisati, povezati i problematizirati prekid srednjoškolskog obrazovanja mladih s teškoćama u razvoju u suvremenom obrazovnom sustavu. Na početku rada opisuje se položaj djece i mladih s teškoćama u razvoju u odgojno- obrazovnom sustavu Republike Hrvatske, koji se povezuje s međunarodnim i hrvatskim pravnim izvore koji su u funkciji zaštite i promocije prava na inkluzivno obrazovanje. Potom se iznose činjenice i uzroci ispadanja mladih s teškoćama u razvoju iz sustava srednjoškolskog obrazovanja, koji se povezuju sa socijalnim rizicima koji se vežu uz ovu problematiku. Mogućnosti prevencije prekida srednjoškolskog obrazovanja mladih s teškoćama u razvoju objašnjene se kroz razinu rada s pojedincem, obitelji te sustavom formalne podrške, s naglaskom na nužnost interdisciplinarnog pristupa ovo problemu u suvremenom društvu.Termination of secondary education in youth people with developmental disabilities is an under-recognized social risk in contemporary society that often remains invisible due to proclaimed educational inclusion. This paper aims to describe and discuss the problem of termination of secondary education in youth people with developmental disabilities in the contemporary education system. The first part of the paper describes the position of children and youth people with developmental disabilities in the education system in the Republic of Croatia, which is related to international and Croatian legal acts designed to protect and promote the right to inclusive education. It then describes the facts and reasons why young people with developmental disabilities drop out of secondary school that are linked to related social risks. The possibilities of prevention of secondary education termination for young people with developmental possibilities are explained on the level of working with the individual, their families and the formal support system, with an emphasis on an interdisciplinary approach to this problem in the contemporary society

Social Welfare System from Parents\u27 of Children with Developmental Disabilities Perspectives

Cilj istraživanja je dobiti uvid u perspektive roditelja djece s teškoćama u razvoju o pravima i uslugama unutar sustava socijalne skrbi. U kvalitativnom istraživanju sudjelovalo je 13 sudionika s područja cijele Hrvatske. Rezultati istraživanja ukazuju na pozitivne i negativne aspekte vezane uz ostvarivanje prava i usluga u sustavu socijalne skrbi iz perspektiva roditelja djece s teškoćama u razvoju. Sustav socijalne skrbi, kao sustav formalne podrške, obiteljima djece s teškoćama u razvoju (ne)pruža različite oblike emocionalne, informacijske i praktične podrške. Pozitivni aspekti ukazuju na profesionalnost socijalnih radnika, poboljšanje kvalitete života i ostvarivanje različitih prava i usluga, dok negativni na nedostatke i probleme vezane uz rad centra za socijalnu skrb i jedinstvenog tijela vještačenja, pravne izvore i ostvarivanje prava.The aim of this research is to gain insight into parents\u27 of children with developmental disabilities perspectives about rights and services in Croatian social welfare system. This qualitative research was conducted with 13 participants. The results show positive and negative aspects about the realization of rights and services in social welfare system from parents´ of children with developmental disabilities perspectives. Social welfare system as formal support system provides different types of emotional, informational and practical support to families of children with developmental disabilities. The positive aspects indicate professionalism of social workers, improvement of family members´ quality of life, and realization of services, while negative aspects show problems and challenges facing social welfare centers and realization of rights and services