Družine otrok z Downovim sindromom in strategije mater pri spoprijemanju s stresom ob seznanitvi z diagnozo

Povzetek

Ključne besede

Podatki

Jezik:	Slovenski jezik
Leto izida:	2013
Izvor:	Ljubljana
Tipologija:	2.11 - Diplomsko delo
Organizacija:	UL PEF - Pedagoška fakulteta
Založnik:	[L. Ojo]
UDK:	376.1
COBISS:	9675849
Št. ogledov:	1808
Št. prenosov:	349
Ocena:	0 (0 glasov)
Metapodatki:

Ostali podatki

Sekundarni jezik:	Angleški jezik
Sekundarni naslov:	Families of children with Down syndrome and maternal strategies of coping with stress knowing the diagnosis
Sekundarni povzetek:	Family has a very important role in children's life, because it influences their development in many ways. Also children themselves influence family members with their developmental and behavioral characteristics and they have an effect on the dynamics of what is happening in the family. The diagnosis of Down syndrome, a chromosomal disorder, which causes characteristic facial features, hypotonic muscles, hyperflexibility of conclusions, sensitive skin, sparse hair and big tongue, touches all family members and it may have a drastic effect on them. A person affected by this chromosomal disorder has visible facial characteristics as well as specific cognitive and personality traits. Due to this reason even the birth of the child suffering from Down syndrome represents a major stress in parents' lives. The stress may also increase during the children's development; it may be especially stressful for mothers, who spend more time with their children in the early period (Most et al., 2006; Norizan in Shamsuddin, 2010; Padeliadu, 1998). The mothers’ ability to cope with stress essentially depends on the support they receive from their partners and the environment they live in, as well as on their stress coping strategies. In the thesis I was interested to discover, on one hand, how all family members face the birth of a child with Down syndrome – what are they experiencing and feeling when they received the diagnosis and whether the child's syndrome had a significant impact on family relationships and parents' attitude towards experts; on the other hand my aim was to observe how effectively does the mother struggle with stress. For this purpose, I have formed a semi-structured interview in which participated mothers of five children of different ages, who are affected by Down syndrome. From the conducted interviews I learned how they coped with the diagnosis and how much they have been assisted by experts, their partner and other family members. To determine their stress coping strategies I used a modified scale of statements from Lazarus and Folkman Ways of coping with stress. The analysis of data obtained from the interviews with mothers showed that they managed to successfully cope with the child’s diagnosis, they completely accepted their child in a very short time, and the children have also been soon accepted by other family members and the environment they live in. I must point out that all the mothers, who participated in my research, used very effective stress coping strategies, such as positive re-evaluation, systematic problem solving and searching for social assistance. It is interesting that the participating mothers have not received any support by experts. The mothers' advise the experts to be sensitive, empathetic and human in delivering the diagnosis and to present to mothers and families the positive facts and characteristics of Down syndrome.
Sekundarne ključne besede:	Down's syndrome;Downov sindrom;
Vrsta datoteke:	application/pdf
Vrsta dela (COBISS):	Diplomsko delo
Komentar na gradivo:	Univ. Ljubljana, Pedagoška fak., Specialna in rehabilitacijska pedagogika
Strani:	X f., 114 str.
Vrsta dela (ePrints):	thesis
Naslov (ePrints):	Families of children with Down syndrome and maternal strategies of coping with stress knowing the diagnosis
Ključne besede (ePrints):	družina
Ključne besede (ePrints, sekundarni jezik):	family
Povzetek (ePrints):	Družina ima v otrokovem življenju zelo pomembno vlogo, saj v marsičem vpliva na njegov razvoj, vendar tudi otrok s svojimi razvojnimi in vedenjskimi značilnostmi vpliva na družinske člane in s tem na dinamiko dogajanja v družini. Diagnoza kot je Downov sindrom otroka, pri katerem gre za kromosomsko motnjo, zaradi katere imajo osebe značilne obrazne poteze, hipotonično muskulaturo, hiperfleksibilne sklepe, občutljivo kožo, redke lase in velik jezik, se dotakne vseh družinskih članov in lahko postavi njihovo življenje na glavo. Ker imajo osebe s to kromosomsko motnjo, poleg naštetih vizualnih znakov, tudi specifične kognitivne in osebnostne značilnosti, je za starše že rojstvo otroka z Downovim sindromom dogodek, ki prinaša veliko stresa. Ta se lahko tekom otrokovega razvoja celo še povečuje, predvsem pri materah, ki imajo v zgodnjem obdobju največ stika z otrokom (Most et al., 2006; Norizan in Shamsuddin, 2010; Padeliadu, 1998). Ali se bo mati s stresom uspešno spoprijela ali ne, pa je odvisno predvsem od podpore partnerja in okolice, kakor tudi od strategij spoprijemanja s stresom. V diplomskem delu me je po eni strani zanimalo, kako se z rojstvom otroka z Downovim sindromom soočajo družinski člani, kaj doživljajo in občutijo ob prejetju diagnoze ter kako je otrok s sindromom pomembno vplival na družinske odnose in odnos staršev do strokovnjakov; po drugi strani pa me je tudi zanimalo, kako učinkovito se matere spoprijemajo s stresom. V ta namen sem sestavila polstrukturiran intervju ter iz pogovorov z materami petih različno starih otrok z Downovim sindromom izvedela, kako so se soočile z diagnozo, koliko so jim pri tem pomagali strokovnjaki, partner in ostali družinski člani. Za ugotavljanje njihovih strategij spoprijemanja s stresom sem uporabila prirejeno lestvico trditev Lazarusa in Folkmanove »Načini spoprijemanja s stresom«. Analiza podatkov, pridobljenih od mater, je pokazala, da so se uspešno soočile z otrokovo diagnozo, saj so otroka v zelo kratkem času popolnoma sprejele tako kot tudi ostali družinski člani in okolica. Poudariti moram, da se je pri vseh materah, ki so sodelovale v moji raziskavi, obnesla uporaba zelo učinkovitih strategij: pozitivne ponovne ocene, načrtnega reševanja problema in iskanja socialne pomoči. Zanimivo pa je, da matere v mojem vzorcu niso imele opore pri strokovnjakih. Slednjim svetujejo, naj bodo pri podajanju diagnoze bolj občutljivi, empatični in človeški ter naj jih seznanijo tudi s pozitivnimi dejstvi in značilnostmi Downovega sindroma.
Povzetek (ePrints, sekundarni jezik):	Family has a very important role in children's life, because it influences their development in many ways. Also children themselves influence family members with their developmental and behavioral characteristics and they have an effect on the dynamics of what is happening in the family. The diagnosis of Down syndrome, a chromosomal disorder, which causes characteristic facial features, hypotonic muscles, hyperflexibility of conclusions, sensitive skin, sparse hair and big tongue, touches all family members and it may have a drastic effect on them. A person affected by this chromosomal disorder has visible facial characteristics as well as specific cognitive and personality traits. Due to this reason even the birth of the child suffering from Down syndrome represents a major stress in parents' lives. The stress may also increase during the children's development; it may be especially stressful for mothers, who spend more time with their children in the early period (Most et al., 2006; Norizan in Shamsuddin, 2010; Padeliadu, 1998). The mothers’ ability to cope with stress essentially depends on the support they receive from their partners and the environment they live in, as well as on their stress coping strategies. In the thesis I was interested to discover, on one hand, how all family members face the birth of a child with Down syndrome – what are they experiencing and feeling when they received the diagnosis and whether the child's syndrome had a significant impact on family relationships and parents' attitude towards experts; on the other hand my aim was to observe how effectively does the mother struggle with stress. For this purpose, I have formed a semi-structured interview in which participated mothers of five children of different ages, who are affected by Down syndrome. From the conducted interviews I learned how they coped with the diagnosis and how much they have been assisted by experts, their partner and other family members. To determine their stress coping strategies I used a modified scale of statements from Lazarus and Folkman Ways of coping with stress. The analysis of data obtained from the interviews with mothers showed that they managed to successfully cope with the child’s diagnosis, they completely accepted their child in a very short time, and the children have also been soon accepted by other family members and the environment they live in. I must point out that all the mothers, who participated in my research, used very effective stress coping strategies, such as positive re-evaluation, systematic problem solving and searching for social assistance. It is interesting that the participating mothers have not received any support by experts. The mothers' advise the experts to be sensitive, empathetic and human in delivering the diagnosis and to present to mothers and families the positive facts and characteristics of Down syndrome.
Ključne besede (ePrints, sekundarni jezik):	family
ID:	8311488