Ouers se belewing van hul kind met 'n ernstige spraakgestremdheid

Thesis (MEdPsych)--Stellenbosch University, 2022.AFRIKAANSE OPSOMMING: Kommunikasie is vir die meeste kinders moeiteloos en doeltreffend, maar vir diegene met ʼn ernstige spraakgestremdheid is dit egter ʼn heel ander ondervinding. Alhoewel daar talle studies beskikbaar is oor die redes waarom ouers ondersteuning benodig asook hul ervaring van intervensiedienste, blyk studies wat die ervaring of belewing van hierdie gestremdheid vanuit ʼn ouer se perspektief toelig, beperk te wees. Hierdie studie fokus vervolgens nie net op die toestand van ʼn ernstige spraakgestremdheid nie, maar bied insig oor die familiekonteks, persoonlike en omgewingsfaktore en die unieke uitdagings wat die ouers van hierdie kinders in die gesig staar. Die studie word gerig deur die primêre navorsingsvraag, ‘Hoe beleef ouers dit om ʼn kind met ʼn ernstige spraakgestremdheid groot te maak?’ en verder toegelig deur die sekondêre navorsingsvraag, ‘Hoe beïnvloed ʼn ernstige spraakgestremdheid ʼn kind se aktiwiteite en deelname binne ʼn veelvlakkige sisteem van sosiale verhoudings?’ Vanuit ʼn interpretivistiese paradigma is daar in hierdie kwalitatiewe studie gebruik gemaak van ʼn transendentale fenomenologiese ontwerp. Ses deelnemers is doelgerig met behulp van tussengangers gekies om aan die studie deel te neem en die data is aan die hand van semi-gestruktureerde, individuele onderhoude, waarneming en joernale van beskrywende woordlyste ingesamel. Voortspruitend uit die transendentale fenomenologiese ontwerp, is daar gebruik gemaak van die sistematiese prosedure wat deur Moustakas (1994) beskryf word om data te organiseer en te ontvou. Hierdie ontwerp en metode het op ʼn beskrywing van die essensie van die deelnemers se belewing eerder as die interpretasie daarvan gefokus. Die hoofdoel van hierdie studie was dus om data in te samel om die gedeelde kenmerke van die ouers se belewing van die besonderse uitdaging te beskryf. Deur hierdie studie kon die navorser vasstel dat ʼn ernstige spraakgestremdheid basies al ʼn kind se aktiwiteits- en deelnamedomeine beïnvloed en dat ʼn kind se disposisie een van die belangrikste faktore is wat ʼn rol speel in hoe ouers die uitdaging beleef. Wat verder uitgestaan het is die ontoereikendheid van openbare hoofstroomskole om hierdie kinders te akkommodeer en die ontoeganklikheid van spesiale onderrig. Alhoewel vroeë intervensie noodsaaklik is vir hierdie kinders om hul volle potensiaal te bereik, is daar bevind dat die verantwoordelikheid daarvoor op die ouers se skouers rus wat tot gevolg het dat kinders wie se ouers dit nie kan bekostig nie, agtergelaat word.ENGLISH SUMMARY: For most children communication is effective and effortless, but it is a very different experience for those with a severe speech disability. Although there are numerous studies available on the reasons why parents need support as well as their experience of intervention services, studies that focus on the experience of this disability from a parent's perspective appear to be limited. This study then not only focuses on severe speech disability as a particular condition, but provides insight into the family context, personal and environmental factors, and the unique challenges faced by parents raising these children. The study is guided by the primary research question, ‘How do parents experience raising a child with a severe speech disability?’, illustrated by the secondary research question, ‘How does a severe speech disability affect a child's activities and participation within a multifaceted system of social relations?’ From an interpretivist paradigm, a transcendental phenomenological design was used in this qualitative study. Six participants were purposefully selected using intermediaries to participate in the study and data were collected using semi-structured, individual interviews, observation, and journals with descriptive word lists. Arising from the transcendental phenomenological design, the systematic procedure described by Moustakas (1994) was used to organize and unfold data. This design and method focused on a description of the essence of participants' experience rather than its interpretation. The main aim of this study was therefore to collect data in order to describe the shared characteristics of parents' lived experience of the challenge. Through this study, the researcher was able to determine that a severe speech disability basically affects all a child's activity and participation domains and that a child's disposition is one of the most important factors that play a role in how parents experience the challenge. What further stood out was the inadequacy of public mainstream schools to accommodate these children and the inaccessibility of special education. Although early intervention is essential for these children to reach their full potential, it has been found that the responsibility for it rests on the shoulders of the parents, leaving children whose parents cannot afford it behind.Master