Šeimų, auginančių neįgalius vaikus, pozityvi patirtis

LTStraipsnyje išryškinama šeimų, auginančių neįgalius vaikus, pozityvi patirtis. Atlikus kokybinį tyrimą išskirtos kategorijos, atskleidžiačios tas gyvenimo sritis (jausmų, asmeninio augimo, santuokinių ryšių, dvasinės ir materialinės gerovės siekimo), kuriose šeima, auginanti neįgalų vaiką, išgyvena teigiamą patirtį. Tyrimo metu išaiškėjo, kad pozityvios patirties išgyvenimas, auginant neįgalų vaiką, priklauso nuo tėvų pozityvaus požiūrio ir socialinių vertybių, nuo stiprių šeiminių santykių ir šeimos lankstumo, atvirumo permainoms, kitų vaikų gerų santykių su neįgaliu broliu arba seserimi. Straipsnyje pateikiami kokybinio tyrimo duomenys išryškina veiksnius, kurie galėtų paankstinti pozityvios patirties atsiradimą šeimoje, kurioje auga neįgalus vaikas (-ai). [Iš leidinio]Reikšminiai žodžiai: Šeima, auginanti neįgalų vaiką; Negalia; Pozityvi patirtis; Family raising a child with disability; Disability; Positive experience.

ENThe strength of a family, its inner resources and positive experience while upbringing a child with disability are not on the list of widely discussed topics in the Lithuanian social science. Stress factors, negative impact of disabled child on the family and its functioning were the topics of many foreign scientific articles for a long time. The newest researches are more focused on the mechanisms of readjustment of parents, the ways of adaptation of the family and a positive attitude towards disability. Experience is a unit of knowledge and skills, which comes as a result of activity. Experience is gained through living, having different impressions, observing, and acting. The moments of positive experience for a family raising a disabled child can become a base for successful and effective life organization. This is why the following research seems to be important. The aim of the research is to identify positive experiences of families in raising children with disabilities on the basis of analysis of scientific literature and qualitative analysis of families upbringing disabled children. The objective of the research is to find out in which areas of life families raising disabled children have positive experience. Participants of the research: eleven parents of disabled children from 10 families participated in a qualitative research. All of them are members of the Lithuanian Association for People with Mental Disability “Viltis”, all of them live in Vilnius city. The children are from five to twenty one years old suffering from cerebral palsy, Down syndrome, autism, and mental retardation.Methods of the research. Half-structured interview is used in the research. The data obtained in the half-structured interview enabled the authors to identify the following four areas of life in which families raising disabled children have positive experience: Feelings (love, emotional bond with the child; child as a source of joy and happiness; child’s advantages); Inner parent’s growth (a more profound understanding of life, it’s meaning; acquiring new experience; empathy towards others; positive attitude towards their “special” parenthood); Family relationships (common goal; ability to divide responsibilities between family members; free time organization); Finding new spiritual and material recourses (decision-making; life changing; wider spectrum of communication; active participation in community life; occupation choices; less worry about material wealth). The birth of a disabled child and care for him / her forces parents to learn to make proper decisions on the family level and have strength in accomplishing them. While looking for the ways to have more positive experience and to stay a part of social life, parents become more open, they turn out to be more active local community members, they live a more religious life, they experience joy by living day to day life and having little things make them happy. They find different ways of help and support and they are more inventive in organizing their free time.Positive experience depends on many different factors: the positive attitude of parents towards their children, their child’s disability, life in general; social family values; good family relationships; family ability to be open to changes; religious views and beliefs; the attitude of other children in the family towards their disabled brother or sister. In order to achieve a higher quality of life for the disabled child to fit his/her strength and abilities, parents can maintain and improve his/her physical and intellectual state and form necessary living skills. Parents can organize the life of their family so as to respect the needs of every member and to serve the well-being of the whole family. [From the publication]