Text in Afrikaans / Summaries in English and Afrikaans / This research sets guidelines for parents of chronically ill children. The guidelines are aimed at equipping the parents to cope more efficiently with the chronic illness and to support other family members in doing so. The nature of chronic illness and its effect on the sick child, his education, the parents and siblings have been researched in the literature study. Chronic illness affects family members in different ways. The· illness affects the sick child's physical, emotional, cognitive, moral and psychosocial development. The parent's total existence and the education of their child are also affected. The illness influences the emotional, cognitive, moral and psychosocial development of siblings. The effect of chronic illness on family members gives rise to certain needs concerned with coping with the illness. Parents as the caretakers of the family and educators of the child are mainly responsible, to assist family members to deal with the illness and its consequences. An empirical study was carried out, involving 102 parents of chronically ill children. This study confirmed that the chronic illness impedes the education process and complicates the adequate development and maturation of specifically the sick child. The effect that chronic illness has on other family members was also confirmed. The empirical study proved that parents need assistance to cope with the illness. They need assistance for themselves as well as assistance in helping other family members to cope. Based on this literature study and the results of the empirical research, guidelines were developed for the parents of the chronically ill child. These guidelines empower the parents in their support roles. It enables them to deal with the needs of the family thereby enabling family members to cope more efficiently with the illness. Several guidelines have been given regarding how to cope with the matters concerned with educational, physical, emotional, cognitive, moral and psychosocial consequences of the illness. Parents should streamline these guidelines to suit the needs of every unique child and the rest of his family. / Hierdie navorsing stel riglyne vir ouers van 'n cluoniese siek kind. Die riglyne is daarop gemik om die ouers te bemagtig om cluoniese siekte beter te kan hanteer en ander gesinslede te steun in hulle hantering van die siekte. Die aard van cluoniese siekte en die effek daarvan op die siek kind, sy opvoeding, die ouers en sibbe is in die literatuurstudie nagevors. Cluoniese siekte raak elke gesinslid op verskeie wyses. Die siek kind se liggaamlike, emosionele, kognitiewe, morele en psigososiale ontwikkeling word deur die siekte beYnvloed. Ouers se totale bestaan en hulle opvoeding van die kind word deur die siekte geraak. Die siekte beYnvloed sibbe se emosionele, kognitiewe, morele en psigososiale ontwikkeling. Die effek van chroniese siekte op elke gesinslid laat behoeftes, wat met die hantering van die siekte verband hou, by elkeen ontstaan. Ouers as versorgers van die gesin en opvoeders van die kind is grootliks verantwoordelik om die siek kind en ander gesinslede te help om die siekte en die gevolge daarvan te hanteer. 'n Empiriese ondersoek is uitgevoer waarby I 02 ouers van cluoniese siek kinders betrek is. Die empiriese ondersoek het bevestig dat cluoniese siekte opvoeding kan bemoeilik en toereikende ontwikkeling en volwassewording by veral die siek kind kompliseer. Chroniese siekte se effek op die ander gesinslede is ook bevestig. Die empiriese ondersoek het aangedui dat ouers behoeftes aan hulp het om die siekte te kan hanteer. Ouers se behoeftes het verband gehou met hulp aan hulself en hulp om die ander gesinslede te help om die siekte beter te hanteer. Op grond van die literatuurstudie en die resultate van die empiriese ondersoek, is riglyne vir ouers van die cluoniese siek kind geskryf. Die riglyne bemagtig ouers as steungewers deurdat hulle toenemend in staat gestel word om in die gesin se behoeftes te voorsien, sodat gesinslede die siekte beter kan hanteer. Verskeie riglyne om sake rakende die siekte te hanteer, is gegee. Daar is aan opvoedkundige, liggaamlike, emosionele, kognitiewe, morele en psigososiale aspekte aandag gegee. Die ouers behoort die riglyne te verbesonder vir elke unieke kind en sy gesin. / Psychology of Education / D.Ed.(Sielkunde Opvoedkunde)

Text in Afrikaans / Summaries in English and Afrikaans / This research sets guidelines for parents of chronically ill children. The guidelines are aimed at equipping the parents to cope more efficiently with the chronic illness and to support other family members in doing so. The nature of chronic illness and its effect on the sick child, his education, the parents and siblings have been researched in the literature study. Chronic illness affects family members in different ways. The· illness affects the sick child's physical, emotional, cognitive, moral and psychosocial development. The parent's total existence and the education of their child are also affected. The illness influences the emotional, cognitive, moral and psychosocial development of siblings. The effect of chronic illness on family members gives rise to certain needs concerned with coping with the illness. Parents as the caretakers of the family and educators of the child are mainly responsible, to assist family members to deal with the illness and its consequences. An empirical study was carried out, involving 102 parents of chronically ill children. This study confirmed that the chronic illness impedes the education process and complicates the adequate development and maturation of specifically the sick child. The effect that chronic illness has on other family members was also confirmed. The empirical study proved that parents need assistance to cope with the illness. They need assistance for themselves as well as assistance in helping other family members to cope. Based on this literature study and the results of the empirical research, guidelines were developed for the parents of the chronically ill child. These guidelines empower the parents in their support roles. It enables them to deal with the needs of the family thereby enabling family members to cope more efficiently with the illness. Several guidelines have been given regarding how to cope with the matters concerned with educational, physical, emotional, cognitive, moral and psychosocial consequences of the illness. Parents should streamline these guidelines to suit the needs of every unique child and the rest of his family. / Hierdie navorsing stel riglyne vir ouers van 'n cluoniese siek kind. Die riglyne is daarop gemik om die ouers te bemagtig om cluoniese siekte beter te kan hanteer en ander gesinslede te steun in hulle hantering van die siekte. Die aard van cluoniese siekte en die effek daarvan op die siek kind, sy opvoeding, die ouers en sibbe is in die literatuurstudie nagevors. Cluoniese siekte raak elke gesinslid op verskeie wyses. Die siek kind se liggaamlike, emosionele, kognitiewe, morele en psigososiale ontwikkeling word deur die siekte beYnvloed. Ouers se totale bestaan en hulle opvoeding van die kind word deur die siekte geraak. Die siekte beYnvloed sibbe se emosionele, kognitiewe, morele en psigososiale ontwikkeling. Die effek van chroniese siekte op elke gesinslid laat behoeftes, wat met die hantering van die siekte verband hou, by elkeen ontstaan. Ouers as versorgers van die gesin en opvoeders van die kind is grootliks verantwoordelik om die siek kind en ander gesinslede te help om die siekte en die gevolge daarvan te hanteer. 'n Empiriese ondersoek is uitgevoer waarby I 02 ouers van cluoniese siek kinders betrek is. Die empiriese ondersoek het bevestig dat cluoniese siekte opvoeding kan bemoeilik en toereikende ontwikkeling en volwassewording by veral die siek kind kompliseer. Chroniese siekte se effek op die ander gesinslede is ook bevestig. Die empiriese ondersoek het aangedui dat ouers behoeftes aan hulp het om die siekte te kan hanteer. Ouers se behoeftes het verband gehou met hulp aan hulself en hulp om die ander gesinslede te help om die siekte beter te hanteer. Op grond van die literatuurstudie en die resultate van die empiriese ondersoek, is riglyne vir ouers van die cluoniese siek kind geskryf. Die riglyne bemagtig ouers as steungewers deurdat hulle toenemend in staat gestel word om in die gesin se behoeftes te voorsien, sodat gesinslede die siekte beter kan hanteer. Verskeie riglyne om sake rakende die siekte te hanteer, is gegee. Daar is aan opvoedkundige, liggaamlike, emosionele, kognitiewe, morele en psigososiale aspekte aandag gegee. Die ouers behoort die riglyne te verbesonder vir elke unieke kind en sy gesin. / Psychology of Education / D.Ed.(Sielkunde Opvoedkunde)

Indiana University-Purdue University Indianapolis (IUPUI) / Technology dependent children such as those who require a feeding tube, tracheotomy or ventilator are a special group of chronically ill children who require complex care on a daily basis. When these children are hospitalized, the accompanying parent and the nurse caring for the child on the inpatient unit must communicate together about the care of the child. Care for the technology dependent child is optimized when parents and nurses both understand the plan of care for the child. To discover the process of parent-nurse communication that results in mutual understanding of the child’s plan of care, a grounded theory study to explore the perspectives of the parents of previously hospitalized technology dependent children was undertaken. The Theory of Shared Communication emerged from the data and illuminates the parent-nurse communication process. The antecedents of the process are respect for own and others expertise. The communication process consists of six communication behaviors; ask, listen, explain, advocate, verify understanding and negotiate roles. The behaviors are nested within each other and all are not necessarily required for the non-linear process to result in the relational outcome of mutual understanding of the child’s plan of care. An integrative review of the literature regarding the process of communication between parents of hospitalized chronically ill children and their nurses shed light on the components of the process, but no study was found that explicated the entire communication process. A subsequent grounded theory study added the perspectives of the nurses to the original theory. No new components of the process were uncovered, but the nurse’s narratives added significantly to our understanding of the communication process. Additionally, parents of currently hospitalized technology dependent children confirmed the propositions of the Theory of Shared Communication.