Parents’ perspectives on the developmental care needs of a child with Down Syndrome

Abstract

ENGLISH ABSTRACT : In the South African context, considerable remnants of the Apartheid era is still evident in low socio-economic areas. Parents, living in adverse conditions, namely, over-crowded housing, poor nutrition, lack of resources, as well as difficulties with access to health facilities, often do not have adequate education and information, regarding health and child development. The child’s development cannot be separated from his/her social context; therefore, children with Down Syndrome, in low socio-economic areas, are at risk of not receiving appropriate, or proper, developmental care and support from parents to maximise their potential. This qualitative case study research aimed to provide a better understanding of how parents, living in low socio-economic areasin Cape Town, South Africa, experience raising a child with Down syndrome. The over-arching goal of this research was an in-depth exploration to understand the perspectives and experiences of parents, in terms of meeting the developmental care needs of their child with Down syndrome. Purposive sampling was used, as parents with a child who has Down syndrome, were identified at a special school. A single-case (embedded) research design was selected that focused on the individual (parent), to understand their perceptions of the events. The data collection method included in-depth, semi-structured interviews with parents only. Content analysis was used as the method of data analysis. The findings revealed that parents presented similarities, such as, relying on religion to help them cope, lack of resources and support services in the community, as well as access to these. Some of the themes that emerged included, the personal challenges of the parents, resilience and coping with the diagnosis, and the comorbid health conditions. The negative and positive experiences of the parents clarified their circumstances. The parents expressed that their experiences with their child instilled a unique knowledge in them, and therefore, they felt the need to share some advice with other parents, living in a similar context, witha child who has Down syndrome, or any other disability. In this study, the researcher offers suggestions to teachers who work with parents of children with Down syndrome, as well as other professionals, namely, doctors, psychologists and various therapists, who interact with parents of children who have Down syndrome.

AFRIKAANSE OPSOMMING : Binne die Suid-Afrikaanse konteks is daar nog baie bewyse van die oorblyfsels van die apartheidsera wat binne die lae sosio-ekonomiese gebiede gesien kan word. Ouers wat leef in toestande soos oormatige behuising, swak voeding, gebrek aan hulpbronne, probleme met toegang tot gesondheidsfasiliteite, het dikwels nie voldoende opleiding en inligting rakende gesondheid en kindontwikkeling nie. Die kind se ontwikkeling kan nie van sy sosiale konteks geskei word nie en dit is om hierdie rede dat kinders met Downsindroom in lae sosioekonomiese gebiede die risiko loop dat hulle nie toepaslike of behoorlike ontwikkelingsorg en ondersteuning van ouers kry om hul potensiaal te maksimeer nie. Hierdie kwalitatiewe gevallestudie-navorsing het ten doel om ons beterte verstaan hoe ouers wat in lae sosio-ekonomiese gebiede in Kaapstad, Suid-Afrika woon, ervaarom hul kind te verhoog met Downsindroom. Die oorkoepelende doelwit van hierdie navorsing was om die perspektiewe en ervarings van ouers deeglik te verken en te verstaan om die ontwikkelingsbehoeftes van hul kind met Downsindroom te ontmoet. Doelwekkende steekproefneming is gebruik as ouers wat 'n kind met Downsindroom gehad het, is by 'n spesiale skool geïdentifiseer. 'n Enkele gevalle (Embedded) navorsingsontwerp is gekies wat op die individu (ouer) gefokus het om hul persepsies van gebeure te verstaan. Die datainsamelingsmetode het in-diepte semi- gestruktureerde onderhoude met ouers ingesluit. Inhoudsanalise is gebruik as die metode van data-analise. Die bevindings het aangedui dat ouers ooreenkomste gehad het soos om op hul godsdiens staat te maak om hulle te help hanteer, gebrek aan hulpbronne en ondersteuningsdienste in die gemeenskap asook toegang tot hierdie. Van die temas wat na vore gekom het, was persoonlike uitdagings van die ouers, veerkragtigheid en die hantering van die diagnose en die gesamentlike gesondheidstoestande. Die negatiewe en positiewe ervarings van die ouers het hulle beter verstaan van hul omstandighede. Die ouers het uitgedruk dat hul ervaringsmet hul kind 'n unieke kennis vir hulle gebring het en daarom die behoefte gehad het om advies te gee met ander ouers wat in 'n soortgelyke konteks woon wat 'n kind met Downsindroom of enige ander gestremdheid het. Hierdie studie bied ook voorstelle aan onderwysers wat saamwerk met ouers van kinders met Downsindroom en professionele persone soos dokters, sielkundiges en verskeie terapeute wat met ouers met kinders met Downsindroom in wisselwerking tree.