Samfélagsþátttaka einhverfra barna: viðhorf foreldra

Abstract

Þessi samanburður á samfélagsþátttöku barna á einhverfurófi og jafnaldra þeirra er hluti rannsóknarinnar Lífsgæði, þátttaka og umhverfi barna sem búsett eru á Íslandi. Eftirfarandi spurningar voru hafðar að leiðarljósi: 1) Hversu ánægðir eru foreldrar einhverfra barna með samfélagsþátttöku barna sinna samanborið við aðra foreldra? 2) Hvaða breytingar vilja foreldrar einhverfra barna sjá á samfélagsþátttöku barna sinna samanborið við aðra foreldra? og 3) Hvernig stuðla foreldrar að samfélagsþátttöku barna sinna? Alls tóku þátt foreldrar 99 einhverfra barna og foreldrar 241 barns í samanburðarhópi. Rannsóknarsniðið var blandað. Munur á ánægju foreldra var skoðaður með Mann - Whitney prófum og áhrifastærðum. Lýsandi tölfræði var notuð til að skoða óskir foreldra um breytingu á þátttöku barna sinna. Aðferðir foreldra við að stuðla að samfélagsþátttöku barnanna voru flokkaðar út frá einkennum í Atlas.ti og greindar í sex þemu. Foreldrar einhverfra barna reyndust óánægðari með þátttöku barna sinna en foreldrar í samanburðarhópi og átti það við um allar athafnir sem spurt var um. Þeir foreldrar sem óskuðu breytinga vildu helst að börn þeirra tækju oftar þátt, þá að hlutdeild þeirra væri meiri og svo að þau tækju þátt í fjölbreyttari athöfnum. Foreldrar í báðum hópum notuðu sömu meginleiðir til að stuðla að þátttöku barna sinna í samfélaginu en foreldrar einhverfra barna lýstu sértækari aðferðum. Mikilvægt er að leita fjölbreyttra leiða til að auka samfélagsþátttöku einhverfra barna í takt við aðstæður, óskir og þarfir hvers barns og fjölskyldu þess.

This study on community participation of children with and without autism spectrum disorder (ASD) is a part of a larger research project Quality of life, participation and environment of children living in Iceland. The study was designed to answer the following research questions: 1) the extent to which parents of children with and without ASD wanted to see changes in their children’s participation in the community?; 2) what kind of changes parents of children with and without ASD wanted to see in their children’s participation in the community?; and 3) what kind of strategies parents use to help their children participate in their communities. The research utilized a mixed-methods design. The Participation and Environment Measure for Children and Youth (PEM-CY) was used to gather online survey and qualitative data from parents of 99 high-functioning children with ASD and 241 children without ASD. Mann-Whitney U tests were used to explore differences between groups on parents’ desire for change and effect sizes were calculated and evaluated by Cohen’s d. Parents of children with ASD were less satisfied with their child’s participation, based on their overall desire for change ((U) = -7,654, p = 0,001). Effect size comparing the magnitude of differences was large (1.02). Parents in both groups reported most often that they wanted their children to participate more frequently, then to be more involved while participating and in more diverse activities. The type of change parents considered was needed varied between groups. Higher percentage of parents of children without ASD wanted their

children to participate more often in activities while parents of children with ASD wanted their children to be more involved and participate in more diverse activities in the community. The qualitative analyses revealed that parents in both groups utilized similar strategies to facilitate their children’s participation in their communities. Nevertheless parents of children with ASD were more specific in their descriptions, and also made use of more distinct strategies. Our results provide an understanding of the complexities of participation within different environments. The results also point to how occupational therapists and other practitioners can support families in their efforts to promote their child’s participation in the community.