published_or_final_version / Nursing Studies / Master / Master of Nursing in Advanced Practice

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Thesis (Ph. D.)--University of Texas at Austin, 2004. / Supervisors: Larry Browning and Rajiv Rimal. Vita. Includes bibliographical references.

Thesis (MA)--Stellenbosch University, 2002. / ENGLISH ABSTRACT: The focus of the present review is the quality of life (QOL) of parents caring for a child with epilepsy. The review is informed by published books and articles available on the Psychlit and Medline databases. The paper provides an overview of epilepsy and the problems patients, particularly children, are confronted with. The important roles that parents fulfil in their child's life is followed by a discussion of the stress and burden experienced by parents caring for a child with epilepsy. Descriptions and definitions of the construct QOL are followed by reported research findings on the QOL of patients with epilepsy. The importance of the QOL of parents caring for a child with epilepsy is emphasized and this leads to an examination of existing research on the QOL of these parents. Research on the QOL of parents of children with epilepsy is limited despite the important roles parents fulfil in the life of their child with epilepsy and the potentially negative consequences of these additional roles for the child, the parents and the remainder of the family. Identification and an understanding of the dimensions of QOL of parents that are impacted upon by a child's epilepsy may produce improved treatment outcomes and QOL for children diagnosed and living with epilepsy. Recommendations for future research are included in the present review. / AFRIKAANSE OPSOMMING: Die fokus van hierdie oorsig is die lewenskwaliteit van ouers wat 'n epileptiese kind versorg. Die oorsig is gebaseer op gepubliseerde boeke en artikels wat beskikbaar is op Psychlit en Medline databasisse. Die oorsig voorsien 'n omskrywing van epilepsie asook van die probleme wat pasiente, veral kinders, ondervind. Die belangrike rolle wat ouers in hul kinders se lewe speel word bespreek en dit word gevolg deur 'n bespreking van die stres en druk wat ouers wat epileptiese kinders versorg, ondervind. Beskrywings en definisies van die konstruk lewenskwaliteit word aangebied, gevolg deur 'n opgawe van navorsingsbevindinge oor die lewenskwaliteit van epiletiese pasiënte. Die belangrikheid van die lewenskwaliteit van ouers van 'n epileptiese kind word beklemtoon en dit lei tot 'n oorsig van huidige navorsing oor die lewenskwaliteit van hierdie ouers. Ten spyte van die belangrike rolle wat ouers in die lewe van hul epileptiese kind speel en die moontlike negatiewe gevolge van hierdie bykomende rolle vir die kind, die ouers en die ander familielede, is navorsing oor die lewenskwaliteit van ouers met epileptiese kinders beperk. Identifisering van en insig in die faktore wat 'n impak het op die lewenskwaliteit van ouers met 'n epileptiese kind, kan lei tot verbeterde behandelingresultate en hoër lewenskwaliteit vir kinders wat gediagnoseer word en wat met epilepsie saamleef. Aanbevelings vir toekomstige navorsing word ook in hierdie oorsig gemaak.

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.