ENGLISH ABSTRACT: This is a descriptive, phenomenological, qualitative study which explores the experiences of and coping strategies employed by the parents/caregivers of disabled children in the management of their care, including rehabilitation and schooling.
The study was conducted in the rural communities of the Eastern Cape outside Mthatha, where parents/caregivers of disabled children have historically had challenges finding suitable schooling for their intellectually impaired children. In 1999, Happy Home community rehabilitation centre for disabled children was established by Mrs. V.V. Duma, a parent of a disabled child. Study participants comprised of parents or care-givers of the disabled children residing at Happy Home. A total of 37 participants took part in the study, comprising of six focus group discussions of six parents/caregivers per group, and one individual interview.
Study findings revealed that parents/caregivers used a variety of coping strategies to manage the care of their disabled children. Both positive and negative coping strategies were used. Negative coping strategies included abandoning the child, which was justified by, for instance, belief that the child had been bewitched by in-laws, or on the pretext that the mother's HIV positive status had been caused by the father, leading to the mother abandoning the child. In cases where both parents had abandoned the baby, or the death of a parent occurred, a caregiver, often a relative, would take responsibility for the child.
Positive strategies can be characterized as willingness by parents/caregivers to do whatever it takes to help the children to survive and access better opportunities. The caregivers/parents who adopted positive coping strategies were mainly from Christian backgrounds and consequently believed that a disabled child is God‟s gift. These parents/caregivers seek assistance from a number of different sources to help the disabled child, including from faith healers, traditional healers, and western medical treatments.
Cultural influences on the reactions of parents, extended family and the wider community as revealed in the study show that disability is seen in negative terms and that the abuse of women, including while pregnant, is supported as a cultural norm. It was found that stress, abuse, and poverty during pregnancy were perceived by parents to be some of the causes of disability in new born babies. Parents/caregivers experienced barriers to health and rehabilitation including; long distances to health and rehabilitation centres with prohibitive transport costs. It appeared that health care providers did not communicate about children‟s conditions or would not treat sick disabled children. There were also data that indicated that there were some health care providers who were helpful and that parents/caregivers used other resources such as radio programmes to educate them about disability.
The study sought to understand the challenges that disabled children and their parents/caregivers experienced. The results of the study indicate that workshops with the health professionals to change their attitudes, and enhance their understanding of disability should be conducted. In addition, community awareness and education campaigns about causes, and signs and symptoms of disabilities; and the issue of cultural norms that impact on the abuse of women and negative attitudes towards disabled children need to be conducted among the communities from which the study participants originate. Furthermore, the study recommends that the Health Science curriculum include a generic module on disability studies to be completed by all health science students, to ensure that as health practitioners such as therapists and nurses, they can be more effective in responding to the needs of disabled children.
AFRIKAANSE OPSOMMING: Die studie is ʼn beskrywende fenomenologiese navorsing, wat die ervaring van ouers/versorgers van gestremde kinders ondersoek; asook die strategiee wat deur hulle aangewent word om te help met die versorging, rehabilitasie en onderrig van gestremde kinders. Die studie het gebruik gemaak van kwalitatiewe data kolleksie metodes. Ouers/versorgers van gestremde kinders wat in Happy Home woon het aan die studie deelgeneem. Ses groepsbesprekings, met ses ouers in elke groep, sowel as individuele onderhoude met elke deelnemer was uitgevoer. In totaal was daar 37 deelnemers in die studie.
Die studie was uitgevoer in die plattelandse gemeenskappe buite Mthatha, in die Oos Kaap. Ouers/versorgers van intelektueel gestremde kinders het probleme ondervind om geskikte onderwys te vind vir hulle kinders in hierdie area. Happy Home, `n gemeenskapsrehabilitasie sentrum vir gestremde kinders, is in 1999 deur Mev J.J.Duma, `n ouer van `n gestremde kind, gestig.
Daar was bevind dat ouers/versorgers `n veskeidenheid hanterings meganismes, positief en negatief,gebruik om hulle gestremde kinders te versorg. Negatiewe stratigee soos om die kind te verlaat is ingesluit en is geregverdig deur, bevoorbeeld, die geloof dat die kind deur skoonouers betower was, of op die voorwendsel dat die moeder se HIV postief status, veroorsaak deur die vader, die oorsaak was dat die moeder gevolglik die kind verlaat het. In Ingevalle waar beide ouers die baba verlaat hetof waar `n ouer gesterf het, het `n versorger wat gewoonlik `n familielid was, verantwoordelikheid geneem vir die kind.
Postiewe strategiee is kenmerkend van ouers/versorgers se gewilligheid om alles moontlik te doen, om die kinders te help om te oorleef en toegang te he tot beter geleenthede. Ouers/versorgers wie positiewe strategiee aangewent het was waarskynlik van Christelike agtergronde en het gevolglik geglo dat ʼn gestremde kind ʼn gesekenk van God is. Sulke ouers/versorgers soek bystand van ʼn verskydenheid hulpbronne, om die gestremde kind te help; insluitend die dienste van ʼn geloofsgeneser, tradisionele genesers, en westerse mediese behandelings. Die studie het gewys dat kulturele invloede op die reaksies van ouers, die familie en die wyer gemeenskap veroorsaak het dat gestremdheid in `n negatiewe lig gesien word en dat die mishandeling van vroue, insluitende swanger vroue, ondersteun word as `n kulturele norm. Daar was bevind dat spanning, mishandeling en armoede gesien word as oorsake van gestremdheid in pas gebore babas. Ouers/versorgers het struikelblokke teegekom met betrekking tot toegang tot gesondheids dienste en rehabilitasie. Dit het lang afstande na gesondheids- en rehabilitasie sentrums asook onbekostigbare vervoer uitgawes ingesluit. Dit het voorgekom asof gesondheidsorg voorsieners nie oor die kinders se toestande gekommunikeer het nie en nie siek gestremde kinders behandel het nie. Daar was data wat daarop gewys het dat sommige gesondheidsorg voorsieners behulpsaam was en dat ouers/versorgers ander hulpbronne soos radio programme gebruik het om hulself in te lig.
Die studie het gepoog om die plattelandse konteks en die uitdagings wat gestremde kinders en hulle ouers/versorgers ondervind het te verstaan. Die studie resultate dui daarop dat werkswinkels met gesondheidsorg verskaffers gehou moet word om hulle begrip van gestremdheid te verbeter om sodoende hulle houding teenoor gestremdhied te verander. Daarbenewens moet opleidings en inligtings veldtogte oor die oorsake, tekens en simptome van gestremdheid, oor die impak wat kulturele norme het op die mishandeling van vroue, en oor die negatiewe houdings teenoor gestremde kinders, in die gemeenskappe waarvandaan die studie deelnemers kom gehou word ʼn Verdere aanbeveling is dat die kurrikulum vir Gesondheids Wetenskappe ʼn algemene module oor gestremdheid studies insluit; om voltooi te word deur all studente wie Gesondheids Wetenskappe studeer; sodat terapeute en verpleegsters grooter kennis sal dra van die behoeftes van gestremde kinders.
