Vpliv osebnostnih in kontekstualnih dejavnikov na samostojnost mlajših odraslih oseb z Downovim sindromom

Povzetek

Ključne besede

Podatki

Jezik:	Slovenski jezik
Leto izida:	2013
Izvor:	Ljubljana
Tipologija:	2.08 - Doktorska disertacija
Organizacija:	UL PEF - Pedagoška fakulteta
Založnik:	[S. Medveš Berginc]
UDK:	376.1(043.3)
COBISS:	9683785
Št. ogledov:	1064
Št. prenosov:	218
Ocena:	0 (0 glasov)
Metapodatki:

Ostali podatki

Sekundarni jezik:	Angleški jezik
Sekundarni naslov:	Influence of personality and contextual factors on the independence of young adults with Down syndrome
Sekundarni povzetek:	The development of autonomy is one of the developmental tasks young adults are faced with, but for young adults with Down syndrome this presents an additional challenge. Rachels and Ruddick (1989) define autonomy as an important component of life from various viewpoints, which also applies to young adults with DS. They defend the opinion that freedom and autonomy are two important conditions for “someone to have their own life”. “To have a life” means that individuals can autonomous plan their daily activities, choose their own circle of people to socialize with, in order to be satisfied and meet their own expectations. Experience has shown that young adults with DS are very much aware of these essential conditions for life and also use them to define their autonomy and freedom. The purpose of this dissertation was to examine the dimensions of autonomy in persons with DS. We were also interested in determining which protective factors affect the successful development of autonomy in young adults with DS and which risk factors hinder a more successful development of autonomy. Parallel to this, we studied the link between the protective and risk factors in different microsystems of persons with DS, as well as how a person with DS understands the influence of various factors on the development of autonomy. The purpose of this study was also to develop a typology of different types of autonomy in persons with DS. We used a qualitative method, which was carried out on the basis of an analysis of semi-structured interviews (multiple case study). We collected the data with semi-structured open interviews with persons with DS, their parents, with the key person and professional staff (four cases and eleven interviews conducted). The results show that the maximum degree of autonomy can be observed in subjects with DS who are not included in an institution but are embedded in a wide social network of persons with a distinct development, and whom the parents allow to be adults to the optimum extent possible as they more or less successfully manage the risks of growing up autonomous. A lower degree of autonomy is observed in subjects with DS whose social network is restricted to institutional staff and the persons living in the institution. Other important persons living with the person with DS and having an ambivalent attitude towards the potential abilities of individuals with DS are one of the obstacles in the development of autonomy. The dissertation concludes with the suggestion that the studied protective and risk factors of persons with DS and the environment should contribute to further consideration on how to develop different contextual conditions for individuals with DS to enable them to develop more autonomy. This is among others important due to the increase in the age structure of individuals with DS as well as other persons with developmental disorders. Due to the extending life expectancy of people with developmental disorders, such persons need to be trained or prepared for an autonomous living, because they will among others outlive their parents or guardians.
Sekundarne ključne besede:	Downov sindrom;adult;odrasli;
Vrsta datoteke:	application/pdf
Vrsta dela (COBISS):	Doktorska disertacija
Komentar na gradivo:	Univ. v Ljubljani, Pedagoška fak.
Strani:	266 str.
Vrsta dela (ePrints):	thesis
Naslov (ePrints):	Influence of personality and contextual factors on the independence of young adults with Down syndrome
Ključne besede (ePrints):	Downov sindrom
Ključne besede (ePrints, sekundarni jezik):	Down syndrome
Povzetek (ePrints):	Razvijanje samostojnosti je ena izmed razvojnih nalog, s katero se spoprijemajo mlajše odrasle osebe, za mlajše odrasle z Downovim sindromom pa je še dodaten izziv. Rachels in Ruddick (1989) utemeljujeta samostojnost kot pomembno komponento življenja iz več zornih kotov, kar velja tudi za mlajše odrasle z DS. Zagovarjata stališče, da sta svoboda in samostojnost pomembna pogoja, da »nekdo ima svoje življenje«. »Imeti življenje« pa pomeni, da posamezniki lahko samostojno odločajo o načrtovanju dnevnih dejavnosti, o družbi, ki si jo bodo izbirali, da bodo zadovoljili sebe in izpolnili svoja pričakovanja. Izkušnje kažejo, da se prav navedenih elementarnih pogojev življenja mlajši odrasli z DS zelo zavedajo in z njimi tudi opredeljujejo svojo samostojnost, svobodo. Namen disertacije je bil raziskati dimenzije samostojnosti pri osebah z DS. Zanimalo nas je tudi, kateri varovalni dejavniki vplivajo na uspešen razvoj samostojnosti mlajših odraslih oseb z DS in kateri ogrožajoči dejavniki ovirajo uspešnejši razvoj samostojnosti. Vzporedno s tem so nas zanimale tudi povezave med varovalnimi in ogrožajočimi dejavniki v različnih mikrosistemih oseb z DS ter tudi, kako oseba z DS razume vpliv različnih dejavnikov na razvoj samostojnosti. Namen raziskave je bil tudi izdelati tipologijo slogov samostojnosti oseb z DS. Uporabljena je bila kvalitativna metodologija, izvedena na podlagi analize delno strukturiranih intervjujev (multipla študija primera). Podatke sem zbirala z delno strukturiranimi odprtimi intervjuji z osebami z DS, njihovimi starši, s ključno osebo in strokovnimi delavci (štirje primeri in enajst izvedenih intervjujev). Rezultati kažejo največjo stopnjo samostojnosti pri osebah z DS, ki niso vključene v institucijo, ampak so vpete v široko socialno mrežo oseb z značilnim razvojem, starši pa jim v optimalni možni meri dopuščajo biti odrasli, saj bolj ali manj uspešno upravljajo s tveganjem samostojnega odraščanja. Upad samostojnosti pa se kaže pri osebah z DS, pri katerih je socialna mreža omejena zgolj na institucionalno osebje in v instituciji bivajoče osebe. Pomembne druge osebe, ki bivajo z osebo z DS in ki izkazujejo ambivalenten odnos do možnih sposobnosti oseb z DS, so ena od ovir v razvijanju samostojnosti. Disertacija se zaključuje s predlogom, da bi morali raziskani varovalni in ogrožajoči dejavniki oseb z DS in okolja prispevati k nadaljnjemu razmisleku o drugačnem soustvarjanju kontekstualnih pogojev za razvijanje večje samostojnosti oseb z DS. Slednje je pomembno med drugim tudi zaradi precejšnjega porasta starostne strukture oseb z DS, kakor tudi drugih oseb z razvojnimi motnjami. Zaradi vse daljše življenjske dobe oseb z razvojnimi motnjami, je treba osebe okrepiti oziroma pripraviti za samostojno bivanje, saj bodo med drugim lahko preživeli svoje starše ali skrbnike.
Povzetek (ePrints, sekundarni jezik):	The development of autonomy is one of the developmental tasks young adults are faced with, but for young adults with Down syndrome this presents an additional challenge. Rachels and Ruddick (1989) define autonomy as an important component of life from various viewpoints, which also applies to young adults with DS. They defend the opinion that freedom and autonomy are two important conditions for “someone to have their own life”. “To have a life” means that individuals can autonomous plan their daily activities, choose their own circle of people to socialize with, in order to be satisfied and meet their own expectations. Experience has shown that young adults with DS are very much aware of these essential conditions for life and also use them to define their autonomy and freedom. The purpose of this dissertation was to examine the dimensions of autonomy in persons with DS. We were also interested in determining which protective factors affect the successful development of autonomy in young adults with DS and which risk factors hinder a more successful development of autonomy. Parallel to this, we studied the link between the protective and risk factors in different microsystems of persons with DS, as well as how a person with DS understands the influence of various factors on the development of autonomy. The purpose of this study was also to develop a typology of different types of autonomy in persons with DS. We used a qualitative method, which was carried out on the basis of an analysis of semi-structured interviews (multiple case study). We collected the data with semi-structured open interviews with persons with DS, their parents, with the key person and professional staff (four cases and eleven interviews conducted). The results show that the maximum degree of autonomy can be observed in subjects with DS who are not included in an institution but are embedded in a wide social network of persons with a distinct development, and whom the parents allow to be adults to the optimum extent possible as they more or less successfully manage the risks of growing up autonomous. A lower degree of autonomy is observed in subjects with DS whose social network is restricted to institutional staff and the persons living in the institution. Other important persons living with the person with DS and having an ambivalent attitude towards the potential abilities of individuals with DS are one of the obstacles in the development of autonomy. The dissertation concludes with the suggestion that the studied protective and risk factors of persons with DS and the environment should contribute to further consideration on how to develop different contextual conditions for individuals with DS to enable them to develop more autonomy. This is among others important due to the increase in the age structure of individuals with DS as well as other persons with developmental disorders. Due to the extending life expectancy of people with developmental disorders, such persons need to be trained or prepared for an autonomous living, because they will among others outlive their parents or guardians.
Ključne besede (ePrints, sekundarni jezik):	Down syndrome
ID:	8311560