This study explores the phenomenon of the relationships between practitioners and families who have a child with a chronic illness. Using a heremeneutic phenomenological method informed by the writings of Martin Heidegger [1889-1976] and Hans-Georg Gadamer [1900-2002], this study provides an understanding of the meaning of 'being in relationship' from the perspective of both families and practitioners.Study participants include ten family groups who have a child with a chronic illness and twelve practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy who work with children with chronic illness. Narrative audiotaped interviewing was the means by which the participants told their stories about times that relationships worked well and when they did not. These stories uncover the every day realities of 'being in relationship' and provide another understanding of the relationship between family and practitioner.The findings of this thesis suggest that chronic childhood illness 'throws' families and practitioners together into a web of relationships that must work for the sake of the child. The relationship is primarily conducted between adults. Children are usually excluded. In order to understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential to the chronic illness journey, relationships are more successful when practitioners recognise the uniqueness of each family web. The nature of the relationship is often simple, yet it co-exists with complexity. This thesis proposes that a 'companion relationship' between practitioners and family may offer a more effective and satisfying way of working. It also challenges practitioners to consider the voice of children within health care relationships.

Thesis (PhD) -- Auckland University of Technology, 2004. / Also held in print (250 leaves, col. ill., 30 cm.) in Akoranga Theses Collection (T 618.92 DIC)

Thesis (M.Psych./Ph.D.)--University of Western Australia, 2007.

Thesis PlanB (M.S.)--University of Wisconsin--Stout, 2009. / Includes bibliographical references.

Thesis (PhD.--Faculty of Health Sciences)-University of Pretoria, 2004. / Summary in English and Afrikaans. Includes bibliographical references.

The purpose of this study was: (1) to evaluate the level of grief experienced by healthcare providers in a pediatric subacute facility, (2) to compare the levels of grief between different groups of healthcare providers (Certified Nurses' Aides, Licensed Nurses, and Respiratory Care Practitioners), and (3) to describe the personality/demographic factors that influence a healthcare provider's ability to cope effectively with compound grief.

The continued development of the American health care system and evolving technology have led to an increased life expectancy within the general population. In fact, these advancements have also resulted in growing numbers of young people with chronic illnesses living into adulthood. Approximately one third of children ages 10-17 have a chronic disease, and the vast majority of these children will survive beyond their 20th birthday (Blum, 1995; Lotstein, McPherson, Strickland, & Newacheck, 2005; White, 2002). The main objective of this study was to explore the healthcare transition (HCT) practices of health care providers and the HCT experiences of chronically ill young adults living with sickle cell disease, cystic fibrosis, and/or diabetes. Meleis, Sawyer, Im, Hifinger Messias, & Schumacher’s (2000) theory on transition and Boykin and Schoenhofer’s (2001) theory of Nursing as Caring provided the theoretical lenses throughwhich study findings were viewed. This was a descriptive exploratory mixed methods design that consisted of survey data and used conventional content analysis to analyze the qualitative data. The quantitative portion of this study incorporated a 41-question survey that was completed by 33 health care providers working with chronically ill young adults in the southeast Florida region. Additionally, semi-structured interviews were conducted with eight young adults (18-24 years of age) living with a sickle cell disease, cystic fibrosis, and/or diabetes. Five themes emerged from an analysis of the data describing the healthcare transition (HCT) experience: Transition Confusion, Familial Reliance, Lost in Transition, Fiscal Stressors, and Transition Uneasiness. The findings of this study demonstrate that there are, at minimum, three general parts of the HCT process that remain deficient: educational preparation, consistent communication between all parties involved in the HCT process, and guidance for the independent negotiation of the present healthcare system. Recommendations for healthcare providers that work with chronically ill young adults include establishing a HCT framework that incorporates consistent communication among team members and patients/families, individualized educational formats, and guidance for navigational skills to negotiate the healthcare system. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

[Truncated abstract] Despite significant scientific advances in tracking the complex physiological mechanisms that drive the asthma disease process, worldwide trends in childhood asthma continue to rise. This research sought to describe the relationships between psychosocial stress, psychosocial resources, asthma severity, and health-related outcomes from the standpoints of biopsychosocial and developmental theory. The research consisted of three studies based on a prospective study involving 2573 children from a community-based birth cohort. The cohort has been under active follow-up from birth and this thesis draws on data obtained at the 1, 2, 6, 10 and 13 year follow-ups . . . The final study undertook to describe the mediating influence of specific supportive behaviours provided by family members and peers to adolescents with asthma. Ninety-nine adolescents participating in the 13 year follow-up of the community cohort study completed a semi-structured interview adapted from the Diabetes Social Support Interview (La Greca et al., 1995) to assess supportive behaviours and the KINDL (Ravens-Sieberer & Bullinger, 1998) to assess QOL. It was predicted that illness-specific support would mediate the relationship between family dysfunction and quality of life. Qualitative analyses identified parents as important sources of tangible support, peers as important sources of companionship and emotional support, and siblings bridging the two, by providing tangible, companionship and emotional support to the adolescent. Mediator analyses found that specific parent behaviours perceived as unsupportive by the adolescent mediated the relationship between family dysfunction and self-oriented quality of life. Clinical implications support the integration of medical and psychological expertise in the treatment of asthma. Future research directions are also discussed.

Accurate assessment is the foundation on which effective nursing interventions rest. However, it is not known how accurately nurses identify and prioritize the needs of parents whose children have chronic conditions. When nurses proceed with interventions based on inaccurate assessments, the results can be unsuccessful interventions that neither meet parental needs nor provide optimal health care for this population of children. This descriptive comparative study was conducted to 1) examine parental needs identified and prioritized by parents of children with chronic conditions and their respective nurse care-givers, and 2) identify similarities and differences between the two groups. Patterns that evolved from these similarities and differences provide us with information related to where nurses have expertise or difficulty identifying and prioritizing the needs of parents. Kleinman's (1978) health care systems theory, which supports the premise that health care professionals and clients perceive health care episodes differently, provided the conceptual framework for this study. Study participants included 38 parents and 13 nurses who were affiliated with ten ambulatory programs in a Western Canadian pediatric hospital. Both groups completed the modified Family Needs Survey (Bailey & Simeonsson, 1988b) and socio-demographic tool developed by this investigator. Responses to the 35-item scale of the Family Needs Survey were described and ranked, in addition to being analyzed using inferential parametric statistics to determine differences between parents' and nurses' identification of parental needs. Responses to the open-ended question on the Survey were described and ranked. Research findings revealed some similarities and a number of striking differences between the responses of parents and nurses. On the 35-item scale, parents and nurses agreed that five parental needs were 1) information about current research, future services and treatments, 2) help locating competent regular or respite care providers, 3) reading material about other parents with a similar child, 4) opportunity to meet and talk with other parents, with a similar child, and 5) more time for self, spouse and other children. Both groups were consistent in their ranking of the first two needs as the most important needs in the information and community services subscales, respectively. However, nurses had generally higher responses on all subscales and identified eight more parental needs than did parents which were related to information, support, and family functioning. Parents and nurses repeated most of the above needs on the open-ended question, although nurses indicated that parents also had a number of needs related to psychosocial issues and family functioning. Nurses ranked counselling (child's condition, treatment, stress management) as the primary support need. Further, both groups differed in their prioritization of parental needs on the open-ended question. Where parents ranked information, community services, and support needs as the most important, nurses ranked support, information, and community services. The implications of these research findings for nursing practice and education are discussed and recommendations for future research are presented. / Applied Science, Faculty of / Nursing, School of / Graduate

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)