Prader-Willijev sindrom

vzgojno-izobraževalni profil

Sabina Konkolič (Author), Marija Kavkler (Mentor), Janez Vogrinc (Co-mentor)

Abstract

Prader-Willijev sindrom (PWS) je zelo redka, kompleksna, kromosomska motnja. Kljub redkosti gre za resen sindrom, saj prizadene posameznika in njemu bližnje osebe na različnih ravneh, tako telesno kot duševno. Sindrom vključuje veliko značilnosti, od katerih je najbolj izstopajoča nenehna lakota. V pedagoškem smislu gre za kontiinuum sposobnosti. V slovenskem prostoru je PWS še neznan, zato je potrebno starše oseb s PWS in različne strokovnjake seznaniti in ozavestiti o potrebah oseb s PWS ter jim ponuditi učinkovite napotke za praktično delo z osebami s PWS, pedagoge pa seznaniti z vzgojno-izobraževalnim profilom učencev s PWS ter z oblikami pomoči in podpore. V teoretičnem delu magistrskega dela je predstavljen PWS in značilnosti funkcioniranja oseb s PWS, predvsem z vzgojno-izobraževalnega vidika, in sicer na biološkem, emocionalnem, kognitivnem, motoričnem, socialnem področju, področju govora in jezika ter v okviru vedenja. Izobraževalne tehnike, metode in oblike dela, obvladovanje vedenjskih vzorcev ter učinkovite vzgojno-izobraževalne obravnave oseb s PWS so opisane, razvrščene in opredeljene po starostnih obdobjih (otroško, predšolsko, šoloobvezno, srednješolsko, mladostniško obdobje in odraslost). Empirična raziskava je bila izvedena s sodelovanjem Društva za pomoč osebam s PWS v Sloveniji. V empiričnem delu je predstavljena kvalitativna raziskava o PWS, ki zajema študijo primera, tehniko spraševanja staršev in učiteljev otrok s PWS z individualnimi intervjuji in sekundarno analizo gradiva in kvantitativna raziskava, ki temelji na delu z anketnimi vprašalniki za starše in učitelje otrok s PWS. Opisana je študija primera osebe s PWS v inkluzivnem izobraževanju z upoštevanjem tako bioloških kot socialno-emocionalnih in vzgojno-izobraževalnih potreb. Analizirani so intervjuji ter anketni vprašalniki za starše ter učitelje oseb s PWS. Ugotovitve intervjujev in rezultati vprašalnikov so primerjani z rezultati študije primera in teoretičnimi izsledki. Vsi pridobljeni podatki so interpretirani s pomočjo že objavljenih spoznanj o PWS, na osnovi vsega pa je izdelan vzgojno-izobraževalni profil oseb s PWS, ki pripomore k ustrezni pedagoški obravnavi teh oseb. Predstavljene so značilnosti oseb s PWS in preizkušene učinkovite metode za delo s temi osebami v vseh življenjskih ciklih (otroštvo, predšolsko, šoloobvezno, srednješolsko, mladostniško in študentsko obdobje ter odraslost) in na vseh področjih delovanja (biološkem, emocionalnem, kognitivnem, motoričnem, socialnem področju, področju govora in jezika ter vedenja), poseben poudarek pa je na izhodiščih za delo z osebami s PWS v pedagoški praksi in prepoznavanju njihovih močnih področij. Navedena so priporočila za načrtovanje in oblikovanje individualiziranega programa. Izpostavljene so smernice in strategije pomoči za preprečevanje težav in premagovanje primanjkljajev oseb s PWS, razviti so učinkoviti načini za zmanjševanje nezaželenih vedenj učencev s PWS. Dokazana je ustreznost inkluzivnega modela vzgoje in izobraževanja za osebe s PWS. Predstavljen je sistemski model prikaza uresničevanja posebnih potreb oseb s PWS, izdelan model sistematičnega pristopa za razvoj inkluzivne vzgoje in izobraževanja, ki učinkovito podpira osebe s PWS, in konkretno opisani podsistemi 4-stopenjskega sistemskega modela za uspešno uvajanje in izvajanje inkluzivnega izobraževanja teh oseb. Magistrsko delo je doprineslo k raziskovanju in razumevanju v našem prostoru premalo raziskanega, a pomembnega sindroma. Prispevek k znanstvenemu razvoju specialne in rehabilitacijske pedagogike je v doprinosu analize stanja, zapisu dejstev, priporočil in smernic za delo z osebami s PWS. Z izoblikovanim vzgojno-izobraževalnim profilom oseb s PWS v Sloveniji pomagamo strokovnjakom in staršem bolje poznati in razumeti sindrom ter jim tako omogočiti ustvariti kakovostnejše vzgojno-izobraževalno okolje.

Keywords

vedenje;učenje;podpora;pomoč;program;puberteta;delovanje;študije primerov;

Data

Language:	Slovenian
Year of publishing:	2014
Typology:	2.09 - Master's Thesis
Organization:	UL PEF - Faculty of Education
Publisher:	[S. Konkolič]
UDC:	376.1:616.4-053.2(043.2)
COBISS:	10410057
Views:	1978
Downloads:	241
Average score:	0 (0 votes)
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Other data

Secondary language:	English
Secondary title:	Prader-Willi syndrome: the educational profile
Secondary abstract:	Prader-Willi syndrome (PWS) is a rare, complex, chromosomal disorder. Despite its rarity, this is a serious syndrome which affects the individual and their close people at various levels, physically and mentally. This syndrome includes a lot of features being constant hunger the most noticeable one. In pedagogical terms, persons with PWS suffer from moderate to severe learning difficulties. PWS is still unknown in Slovenia, therefore it is necessary to inform and raise awareness of both parents and various professionals of what the needs of children/persons with PWS are and offer them effective guidance for their practical work and equipping educators with the educational profile of pupils with PWS and forms of assistance and support. The theoretical part of this master thesis presents the characteristics of PWS and functioning of persons with PWS, particularly from the educational point of view, in biological, emotional, cognitive, motor, social field, the field of speech and language and in the context of behaviour. Educational techniques, methods and forms of work, behavioural management and effective educational treatment of persons with PWS are described, classified and defined in different age groups (children, preschool, mandatory school, secondary school, juvenile period and adulthood). The empirical research has been carried out in cooperation with the Prader-Willi Syndrome Association Slovenia. The empirical part contains a qualitative research of PWS that includes a case study, technics of questioning the parents and teachers of children with PWS using individual interviews and secondary analysis of materials, and quantitative one based on questionnaires for parents and teachers of children with PWS. A case study of a person with PWS in inclusive education is described taking into account their biological, socio-emotional and educational needs as well. Interviews and questionnaires for parents and teachers of persons with PWS are analysed. Findings from interviews and questionnaires are compared with the results of case studies and theoretical results. All obtained data are interpreted with previously published findings about PWS. Based on everything an educational profile of individuals with PWS was produced contributing to their appropriate pedagogical treatment. Characteristics of persons with PWS and proven effective methods for working with these people at all stages of their life cycles (childhood, preschool, mandatory school, secondary school, youth and student period and adulthood) and in all areas (biological, emotional, cognitive, motor, social field, the field of speech and language and behaviour) are presented, with special emphasis on platform for working with them in educational practice and on identification of their strengths. Recommendations for planning and designing an individualized programme are with PWS are exposed and effective ways to reduce unwanted behaviours of pupils and students with PWS are developed. Adequacy of the model of inclusive education for persons with PWS is proven. Display of a system model of realization of special needs of persons with PWS and the model of a systematic approach to the development of inclusive education that effectively supports people with PWS are featured, subsystems of the 4-step system model for a successful introduction and implementation of inclusive education for these people are concretely described. This master thesis contributes to the valuable research and better understanding of PWS, in our area so far poorly studied though important syndrome. Analysis, facts, recommendations and guidelines for working with people with PWS are contribution to the scientific development of special and rehabilitation pedagogy. With an articulated educational profile of people with PWS in Slovenia we can help professionals and parents to learn and understand this syndrome better and enable them to create a quality educational environment.
Secondary keywords:	special education;pouk po prilagojenem programu;
File type:	application/pdf
Type (COBISS):	Master's thesis
Thesis comment:	Univ. Ljubljana, Pedagoška fak.
Pages:	340 str.
ID:	8708490