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Tesi sul tema "Chronically ill children"

Autore: Grafiati

Pubblicato: 4 giugno 2021

Ultima modifica: 29 luglio 2024

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1

Fiala, Samuel E. "Camp counselors working with chronically ill children". Texas A&M University, 2005. http://hdl.handle.net/1969.1/3210.

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A growing body of empirical evidence suggests that attending specialized summer camps is beneficial for chronically ill youth (Briery & Rabian, 1999). However, there is some inconsistency across studies regarding these benefits (Hazzard & Angert, 1986). One potential explanation for these differences across camps is that they may differ in how well they recruit and train effective volunteer camp counselors. This possibility cannot be explored until more research is conducted identifying what type of person volunteers to work with chronically ill children and how they differ from others. In response to this gap in the research literature, the present study was conducted to examine characteristics of volunteer camp counselors (n =72), a group of nonvolunteers (n = 325), and a group of volunteer mentors (n = 194). Guided by Omoto and Snyders (1990) volunteer process model, the investigation explored how counselors differed from others in terms of dispositional variables, knowledge, and experience; and the relation between these individual characteristics and ratings of counselor efficacy was explored. Changes in counselors knowledge of and/or attitudes toward chronically ill children after their camp experience were also examined. Results suggest that camp counselors differ from others in terms of dispositional characteristics (e.g., attachment style), knowledge, and experience. Specifically, counselors displayed higher levels of agreeableness, greater attachment security, more knowledge of chronic illness, and greater experience with chronic illness than nonvolunteers. Efforts to predict which counselors would be rated as most effective were unsuccessful. Counselors knowledge of illness increased over the course of their camp experience.

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2

Lindström, Caisa. "Burnout in parents of chronically ill children". Doctoral thesis, Örebro universitet, Institutionen för hälsovetenskaper, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-47391.

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Parents of children with a chronic disease are usually highly involved in their child’s treatment and may be affected by the heavy demands and constant stress. This can increase the risk of developing burnout, which is an individual reaction to long-term stress consisting of symptoms associated with emotional exhaustion, as well as physical and cognitive fatigue. The overall aim was to estimate the prevalence of burnout in parents of children with Type 1 Diabetes Mellitus (T1DM) and inflammatory bowel disease (IBD) (paper I), identify the risk factors associated with parenting a child with T1DM (paper II), explore how mothers suffering from burnout describe their mothering of a child with diabetes, with special focus on their need for control and Performance-based self-esteem (PBSE) (paper IV), and to evaluate the effect of a group intervention aimed at reducing stress-related symptoms (paper III). A total of 251 parents of children with T1DM, 38 parents of children with IBD and 124 parents of healthy children participated in a population-based study (I, II). The validated Shirom-Melamed Burnout Questionnaire (SMBQ) was used to assess burnout. 16 parents (SMBQ ≥3.75) participated in a group intervention and were evaluated for changes in SMBQ and PBSE (III). A total of 21 mothers of children with T1DM who scored for clinical burnout (SMBQ) participated in a qualitative study. Semi-structured interviews were conducted and Inductive content analysis was used (IV). In the study group 36.0% parents of children with a chronic disease scored for clinical burnout (SMBQ ≥3.75) compared to 20.2% of the reference parents (p=0.001) with a preponderance of mothers compared to fathers, 42% vs. 20.5% (p=0.001), respectively (I). Less support from the social network, sleep disturbances and lack of personal leisure time and recovery seem to be important risk factors for clinical burnout in parents of children with T1DM, especially mothers (II). Mothers’ experiences of mothering a child with T1DM were interpreted as one theme; Mission impossible, illustrating the extremely difficult circumstances under which they bring up the child with diabetes to adulthood (IV). Parents’ subjective evaluation of the intervention group was mainly positive and SMBQ (p=0.01) and PBSE scale (p= 0.04) measurements were significantly reduced 6 months after completion of the intervention (III). It is important to pay attention to how parents and especially mothers experience their daily life in order to support those who are at risk of developing burnout.

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3

Fung, Shuk-man Amy. "Psychosocial risk and protective factors in chronic childhood illnesses : the case of thalassaemia major /". Hong Kong : University of Hong Kong, 1996. http://sunzi.lib.hku.hk/hkuto/record.jsp?B17390084.

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4

Driskill, Gail. "Chronically Ill Children: Maternal Stress and Psychological Symptomatology". Thesis, University of North Texas, 1995. https://digital.library.unt.edu/ark:/67531/metadc279114/.

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This study used a parenting stress and coping model to identify predictors of symptomatology for 13 8 mothers of medically compromised children. This model proposed that: child characteristics (severity of the chronic illness and child related parenting stressors); parent characteristics (self-esteem, sense of competence, and parents' perceived stress/distress); and environmental characteristics (social support, general life stressor events, and demographic variables) contribute to psychological symptomatology for these mothers. Multiple regression analysis found a relationship between general life stressor events, severity of the children's chronic conditions, lower satisfaction with social support, lower self-esteem, and younger mothers' ages and greater symptomatology. Trends toward significance were found for more parenting stress and lower parenting sense of competence predicting greater symptomatology. Predicted relationships between family socioeconomic status and parenting daily hassles and symptomatology were not supported.

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5

Lees, Nancy Berman. "The self-esteem of chronically ill adolescents". CSUSB ScholarWorks, 1991. https://scholarworks.lib.csusb.edu/etd-project/852.

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6

Rodak, Rina S. "Chronically and terminally ill children and medical decision-making". Thesis, National Library of Canada = Bibliothèque nationale du Canada, 2000. http://www.collectionscanada.ca/obj/s4/f2/dsk2/ftp03/MQ55708.pdf.

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7

Fritts, Sharon Louise. "The impact of chronic illness on the family, the educators, and the community : an ethnographic research study /". For electronic version search Digital dissertations database. Restricted to UC campuses. Access is free to UC campus dissertations, 2004. http://uclibs.org/PID/11984.

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Thesis (Ph. D.)--Joint Doctoral Program in Educational Leadership (California State University, Fresno and University of California, Davis).
Typescript. Includes bibliographical references. Also available via the World Wide Web. (Restricted to UC campuses)

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8

Thompson, Jacquelyn J. "How chronic illness affects family relationships and the individual". Online version, 2009. http://www.uwstout.edu/lib/thesis/2009/2009thompsonj.pdf.

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9

Myers, Basil Joseph. "School, hospital information exchange, boundary spanning for chronically ill children". Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1997. http://www.collectionscanada.ca/obj/s4/f2/dsk3/ftp04/nq20759.pdf.

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10

Ioannou, Chrissi. "Acute pain in chronically ill children : psychological assessment and intervention". Thesis, University of Leicester, 1992. http://hdl.handle.net/2381/34660.

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Five separate studies are reported on two groups of chronically ill children: children with end-stage renal failure who had received renal transplants and children with insulin dependent diabetes mellitus (IDDM). Assessment studies of both these groups investigated psychosocial factors influencing children's anxiety, pain and distress during venipunctures. Behavioural, cognitive and physiological measures of pain were used as well as standardized and structured interview questionnaires. The assessment studies involved 21 renal transplant children and 62 chidren with IDDM. The results found a revised version of the Observation Scale of Behavioural Distress to be a valid and reliable measure of children's distress during venipuncture. The predictor variables for children's distress in the transplant sample were the child's self-concept for social acceptance and the child's usual anxiety over injections. In the diabetic sample, the presence of emotional/conduct disorder, the child's usual anxiety over bloodtests and parent's rating of the child's usual anxiety over bloodtests were the three predictor variables for children's distress. Other significant psychosocial variables are discussed. Bloodtests were reported to be the most stressful aspect of the medical treatment by parents of children with renal transplants and by diabetic children. A pilot study is reported of cognitive-behavioural and hypnotic intervention with children in the transplant clinic. Cogntive-behavioural intervention was found to be effective in reducing distress during venipuncture in children aged four to seven years, following renal transplantation. With older children aged 6-16 years, both cognitive-behavioural and hypnotic intervention were effective in reducing diabetic children's distress. However, control groups appeared to improve following baseline observations, possibly as a result of non-specific factors such as attention and therapist presence. The results are discussed in relation to the literature on acute pain in children.

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11

Jean, Raynice Eveline. "The perceptions among African American caregivers of children with chronic illnesses /". Digital version accessible at:, 1999. http://wwwlib.umi.com/cr/utexas/main.

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12

Reich, Julie A. "Perceptions of Parental Differential Treatment: Correlates in Chronically Ill and Non-Ill Samples of Children". [Tampa, Fla.] : University of South Florida, 2003. http://purl.fcla.edu/fcla/etd/SFE0000063.

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13

Blubaugh, Victoria G. "Self-concept in siblings of chronically ill children : Duchenne muscular dystrophy /". The Ohio State University, 1986. http://rave.ohiolink.edu/etdc/view?acc_num=osu1487265555440494.

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14

Tew, Kristi L. (Kristi Lee). "The Efficacy of Filial Therapy with Families with Chronically Ill Children". Thesis, University of North Texas, 1997. https://digital.library.unt.edu/ark:/67531/metadc277594/.

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This study was designed to determine the effectiveness of Filial Therapy as a method of intervention with families with chronically ill children. Filial Therapy is an intervention that focuses on strengthening and enhancing the parent-child relationship. Parents are trained to become the agents of change for their children's behaviors by utilizing basic child-centered play therapy skills in weekly play sessions. The purpose of this study was to a) determine the effectiveness in decreasing parental stress, b) determine the effectiveness in increasing parental acceptance, and c) determine the effectiveness in decreasing problematic behaviors in the chronically ill child as assessed by their parents.

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15

Shiu, Shiona. "Achieving equity in educational outcomes for students with chronic illness". View thesis, 2008. http://handle.uws.edu.au:8081/1959.7/19222.

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Thesis (Ed.D.)--University of Western Sydney, 2008.
A thesis submitted to the University of Western Sydney, College of Arts, School of Education, in fulfilment of the requirements for the degree of Doctor of Education. Includes bibliography.

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16

English, Amber L. "Measuring parenting stress in those with chronically ill children: A psychometric evaluation". Thesis, English, Amber L. (2020) Measuring parenting stress in those with chronically ill children: A psychometric evaluation. Masters by Coursework thesis, Murdoch University, 2020. https://researchrepository.murdoch.edu.au/id/eprint/60896/.

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This study examined the measurement of parenting stress in caregivers of chronically ill children (N=203). The evaluation was focussed on the two most popular measures in the literature; the Parenting Stress Index-Short Form and the Paediatric Inventory for Parents. The Parenting Stress Index-Short Form (PSI-SF) it the most commonly used measure. However, while the PSI-SF has been well-supported in the healthy populations it was designed for, the evidence was poor for its utility with parents of chronically ill children. The Paediatric Inventory for Parents (PIP), developed with parents of children with cancer, has emerged as a popular alternative as a general measure for paediatric disease populations. However, the PIP had not been adequately investigated to make sure it is the best measure for this population. To address this, the present study conducted exploratory factor analyses of the PSI-SF and the PIP. The results failed to support the proposed factor structure for either measure. Instead, both demonstrated a univariate structure, indicating that they may lack the sensitivity to capture discrete aspects of parenting stress in this population. The implications of these results are discussed, and potential univariate solutions considered. The main recommendation for future research is to focus on condition-specific measures, as general measures appear to lack.

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17

Bracey, Kimberly Vaunterice. "Experiences of Parents With Chronically Ill Children Regarding the Affordable Care Act". ScholarWorks, 2019. https://scholarworks.waldenu.edu/dissertations/6975.

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Ways in which the implementation of the Patient Protection and Affordable Care Act (ACA) affect parents with chronically ill children are not well understood. The purpose of this phenomenographic study was to gain greater insight into the perceived experiences of parents of chronically ill children regarding implementation of the ACA in a southern state. Argyris's intervention theory provided the framework for the study. Face-to-face interviews were conducted with a purposeful sample of 12 female parents who are caregivers of chronically ill children. Data were analyzed and coded to identify categories and themes. Findings indicated that parents view physicians and policymakers as key actors in their communities to create more equitable services for parents of chronically ill children through the expansion of Medicaid services in southern state. Many participants did not perceive that the ACA had made significant changes to services received prior to its implementation. Findings may assist health care providers, insurance companies, legislators, and other policymakers to develop appropriate health care policies and interventions to lessen the financial burden experienced by parents of chronically ill children. Providing more support services that address the physical, emotional, and financial needs of parents may improve the health outcomes of their chronically ill children.

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18

Shiu, Shiona. "Achieving equity in educational outcomes for students with chronic illness". Thesis, View thesis, 2008. http://handle.uws.edu.au:8081/1959.7/19222.

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This portfolio documents an investigation of both parent and educator perspectives of managing a chronic illness at school with the aim of developing a framework to ensure that students with chronic illness have equitable access to the same educational outcomes as their healthy peers. This study provides an in-depth exploration of a number of facets of the impact of having a chronic illness, including social, emotional, cognitive and physical aspects. The use of both parent and teacher perspectives provides insights into the realities of having a child with chronic illness at school, and offers some understandings of the risks and challenges parents face as they relinquish care of their ill child into the hands of educators. It also examines the role of educators as they assume much of the responsibility for providing educational, social and emotional support for these students, as well as monitoring their medical needs and health status whilst at school. The evidence from research in the field of child chronic illness suggests that students with chronic illness are at risk academically, emotionally and socially. The effectiveness of any strategy that aims to achieve equity in participation and outcomes for this group of students will depend upon understanding the complex factors that impact on students with chronic illness at school such as absenteeism, relationships with peers and individual resilience. This study addresses the research questions: What are the concerns of parents, educators and students with chronic illness in the educational context? What strategies are consistently being identified as effective in supporting students with a chronic illness at school? And what are the barriers to chronically ill students accessing educational services? Two, two part questionnaires were used to elicit responses from parents and educators of students with chronic illness. The parent respondents consisted of 121 parents of students with chronic illness attending Department of Education schools across NSW, Australia. The teacher respondents consisted of 111 teachers of students with chronic illness in Department of Education schools across NSW. The insights that emerged from the research suggest that the needs of this group of students remain unrecognised and under-resourced. Major findings indicate that many students with chronic illness have high levels of absenteeism, are underachieving academically, have difficulties keeping up and catching up with missed school work, are challenged in their relationships with their peers, and their medical needs are not recognised nor resourced adequately. Teachers of students with chronic illness are inadequately trained, and lack the time and resources to meet the individual needs of these students. The results demonstrated that students with chronic illness are not accessing educational services in the same ways as their healthy peers. The findings of this study suggest schools can make a difference to how well a student and a family cope with chronic illness. The provision of appropriate support, resources and the demonstration of positive attitudes by school communities can foster an environment that facilitates the academic and social growth of the student. The study includes recommendations in the areas of: building communication between home, school and medical professionals; maintaining academic achievement; building peer relationships; managing student medical needs; supporting students returning to school; reducing absenteeism; and supporting emotional health of student and family. The findings of this study have raised an awareness of the needs of students with chronic illness at school, and identified strategies for their support and inclusion. The findings also provide a framework for the provision of educational services for students with chronic illness. Hence, this portfolio represents an exploration of the journey much traveled by parents and educators of students with a chronic illness, with the intent of raising awareness of their needs, and providing direction for policy makers in the field of education, to ensure that students with chronic illness have equitable access to the same educational outcomes as their healthy peers.

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19

Haley, Janice M. "Voicing the strengths of parent caregivers of medically fragile children from the Pacific Islands and the Philippines". Thesis, University of Hawaii at Manoa, 2003. http://proquest.umi.com/pqdweb?index=0&did=764803621&SrchMode=1&sid=4&Fmt=2&VInst=PROD&VType=PQD&RQT=309&VName=PQD&TS=1233350447&clientId=23440.

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20

Mireau, Margaret Ruth. "The experience of women who are caregivers to their chronically mentally ill adult children". Thesis, National Library of Canada = Bibliothèque nationale du Canada, 2000. http://www.collectionscanada.ca/obj/s4/f2/dsk2/ftp03/MQ54734.pdf.

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21

Bendavid-Streiner, Zohar. "The relationship between coping strategies and psychological adjustment among siblings of chronically ill children". Thesis, National Library of Canada = Bibliothèque nationale du Canada, 2000. http://www.collectionscanada.ca/obj/s4/f2/dsk2/ftp02/NQ58264.pdf.

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22

Oliviero, Margaret C. "The relationship between frequency of hospitalization and the anxiety levels in chronically ill children /". Staten Island, N.Y. : [s.n.], 1993. http://library.wagner.edu/theses/nursing/1993/thesis_nur_1993_olivi_relat.pdf.

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23

Maggio, Barbara J. "The effect of nurses' parental status on attitude toward working with chronically ill children /". Staten Island, N.Y. : [s.n.], 1990. http://library.wagner.edu/theses/nursing/1990/thesis_nur_1990_maggi_effec.pdf.

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24

Chang, Lu-I. 1965. "Perceptions of parenting stress and family functioning among Taiwanese mothers with chronically ill children". Thesis, The University of Arizona, 1993. http://hdl.handle.net/10150/558217.

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25

Fung, Shuk-man Amy, e 馮淑敏. "Psychosocial risk and protective factors in chronic childhood illnesses: the case of thalassaemia major". Thesis, The University of Hong Kong (Pokfulam, Hong Kong), 1996. http://hub.hku.hk/bib/B31234847.

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26

Spencer, Patricia E. "From morphine to milk of magnesia : a case study of children and families living with M.E". Thesis, University of East Anglia, 1997. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.338040.

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27

Ismail, Ahmad Faisal Bin. "Oral health status in children with type I diabetes mellitus". Thesis, The University of Hong Kong (Pokfulam, Hong Kong), 2014. http://hdl.handle.net/10722/206501.

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Diabetes mellitus is a metabolic disorder with varied etiology and diverse clinical course. World Health Organization (WHO) has distinguished three types of diabetes mellitus: insulin-dependent (Type I), non insulin-dependent (Type II) and associated with other disease and syndromes. Type I diabetes patients account for approximately 10% of all diabetics, in which children and adolescent almost exclusively develop Type I diabetes. Diabetes can be diagnosed on the basis of symptoms, such as excessive thirst appetite, polyuria, body weight reduction, glucosuria and hyperglycaemia, confirmed by laboratory test. Acute complications may develop in the course of diabetes, usually related to extreme level of plasma glucose. Chronic complications usually developed secondary to micro-vascular changes, causing damages to small vessels, nerves, multiple organs and oral cavity. The systematic review summarized the available evidence on the oral health of children with Type I diabetes mellitus. A total of 1179 abstract were retrieved during the initial search, and after exclusion, only 37 articles were qualified for final review and analysis. Though there was conflicting evidence regarding caries experience, it is clear that children with Type I diabetes mellitus exhibited poorer overall oral health status with higher plaque accumulation compared to healthy children. The case-control study aimed to evaluate and compare the oral health status of children with Type I diabetes mellitus with healthy, non-diabetic controls in Hong Kong. A sample of 64 children (32 Type I diabetes mellitus, 32 age- and gender-matched controls) were included in the study. The study concluded that children with Type I diabetes had poor oral health status with greater plaque deposition when compared to healthy, non-diabetic controls.
published_or_final_version
Dental Surgery
Master
Master of Dental Surgery

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28

Lindholm, Michelle Marie. "Chronic childhood disease and child abuse". CSUSB ScholarWorks, 1998. https://scholarworks.lib.csusb.edu/etd-project/1559.

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The purpose of the present research is to investigate whether or not chronically ill children are victims of child abuse more frequently than healthy children. The gender of the child and of the parent will also be examined for differences in the treatment children receive.

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29

Foster, Christine C. "Families of chronically ill children: The relationship between mothers' reports of normalization and social support". Thesis, University of Ottawa (Canada), 1996. http://hdl.handle.net/10393/9789.

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This study tested the hypotheses that mothers of chronically ill children who reported high use of normalization by their families had higher levels of perceived social support. Additionally, the internal reliability of the Normalization Scale (Murphy, 1992) was determined. A non-probability purposive sample of thirty-three mothers of chronically ill school-aged children was recruited from a medical day unit of a regional pediatric tertiary health setting. Employing the Family Management Style Model (Knafl & Deatrick, 1990) as a conceptual framework, the study used a descriptive correlational design. Data were collected from mothers using the Normalization Scale (Murphy, 1994), the Personal Resource Questionnaire, (Weinert, 1987) and a demographic questionnaire. Mothers' reported use of normalization by their families was found to be associated with perceived social support and their satisfaction with help received from their social support network. The relationship between mothers' reported use of normalization and the size of the social support network was not significant. The study demonstrated that family and friends are the sources of support that mothers most frequently cite as helpful. This investigation also confirmed the importance of health care professionals in the family's process of normalizing their child's illness and their family life. Support groups were not perceived as helpful by these mothers. (Abstract shortened by UMI.)

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30

Chiriboga, Jennifer Ann. "The effects of gender, ethnicity, and social self concept, on behavioral intentions towards children with chronic illness". Virtual Press, 2005. http://liblink.bsu.edu/uhtbin/catkey/1317742.

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31

Spurrier, Nicola J. "Parent's management of childhood asthma : the relevance of psychosocial factors /". Title page, contents and abstract only, 1998. http://web4.library.adelaide.edu.au/theses/09PH/09phs7722.pdf.

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32

McIntyre, Carol Lynne. "The role of competency-enhancing helpgiving practices in parental adaptation for families of children with special needs /". Full text (PDF) from UMI/Dissertation Abstracts International, 2000. http://wwwlib.umi.com/cr/utexas/fullcit?p3004337.

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33

Lalkhen, Nuruneesa. "The quality of life of parents of children with epilepsy". Thesis, Stellenbosch : Stellenbosch University, 2002. http://hdl.handle.net/10019.1/53152.

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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.

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Halls, Terry T. "The experience of parents raising a child with special health care needs while living in a rural area". Laramie, Wyo. : University of Wyoming, 2008. http://proquest.umi.com/pqdweb?did=1798480931&sid=1&Fmt=2&clientId=18949&RQT=309&VName=PQD.

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35

Hattori, Keiko. "Good Death Among Elderly Japanese Americans in Hawaii". Diss., University of Hawaii at Manoa, 2007. http://hdl.handle.net/10125/22054.

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The purpose of this focused ethnographic study was to describe the patterns of a good death held by elderly Japanese Americans living in Hawaii. Eighteen "healthy active" elderly Japanese Americans were interviewed individually. In addition, supplementary data, such as interviews with experts and field observations were collected for triangulation of the data. Four themes were derived from 1224 keywords, 56 categories, and 13 patterns. These were: being a burden to the family, process of life and death, individual views on death, and Japanese culture in Hawaii. Being a burden to the family was the largest concern in the participants' idea of dying a good death. Having secure financial resources were key for adequate preparation. The elderly Japanese Americans believed that suffering at the end-of-life should be avoided in order to achieve a good death. Their concept of suffering included: unmanageable pain, being ill for a long time, and being bedridden. Several participants preferred a sudden type of death because they would not have to suffer and not be burdens their family. Contentment in life was also an important aspect of a good death. There was a common belief that the way a person lived was connected with the way he/she died. A number of the participants preferred to die in their own home. Hospitals and retirement homes were other alternatives for the place of death. Individual views on death contributed to establish the concept of good death among elderly Japanese American participants. They shared similar attitudes toward death which were a part of life and inevitable. These attitudes were influenced by religious beliefs and past experiences with death. Different generations of elderly Japanese Americans had different views. The Shin-Issei (first generation who immigrated after World War II) and the Nisei (second generation) held more Japanese views compared to the Sansei (third generation) who were more acculturated. Although the Japanese American parents and children might have different views on life and death, the importance of close family relations and family support was passed on to younger generations.

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36

Whyte, Dorothy A. "The experience of families caring for a child with cystic fibrosis : a nursing response". Thesis, University of Edinburgh, 1989. http://hdl.handle.net/1842/8370.

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This thesis is concerned with families and chronic illness in childhood. The specific focus of the study is the nursing contribution to support of the family. A longitudinal study of the experience of four families caring for a child with cystic fibrosis was carried out using the ethnographic approach. Analysis of the four case studies provides insight to the effect of cystic fibrosis on each family member and on family interaction. The psychosocial transition by which the families moved from seeing themselves as healthy families to accepting the reality of a long-term health problem is described. The complexity of the effect of the genetic aspects and the grim prognosis is explored. The importance of finding meaning in suffering, the experiences of crisis and the chronic burden of care during the long-term adaptive stage of the illness are described. The support networks used by the families, and the nurse's contribution to that support are analysed. The research arose from practice and raises issues for nursing - issues relating to the level of interpersonal skill and the emotional investment required. The theoretical underpinning of nursing interaction is elaborated and the utility of systems theory in the understanding of the nursing situation is discussed. The importance of synchrony in the parents' adaptation to the child's illness is an emergent theme. The implications of the findings for nursing practice, management and research are discussed. The case for the development of a concept of family nursing to meet contemporary health care needs is argued.

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37

Irwin, Mary Kay. "Educational Issues of Children who are Chronically Ill: A Qualitative Analysis of Patients’, Caregivers’, and Educators’ Beliefs". University of Cincinnati / OhioLINK, 2012. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1353088496.

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38

Elam, Megan P. "Educational Issues of Children who are Chronically Ill: A Quantitative Analysis of Patients’, Caregivers’, and Educators’ Beliefs". University of Cincinnati / OhioLINK, 2012. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1353088587.

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39

Johnson, Norah Louise. "Understanding Relationships in Health Related Quality of Life for Parents of Children with Autism Spectrum Disorder". [Milwaukee, Wis.] : e-Publications@Marquette, 2009. http://epublications.marquette.edu/dissertations_mu/6.

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40

Lam, Ching-yee. "The impacts of childhood cancer on siblings among Hong Kong Chinese : from parents' perspectives /". View the Table of Contents & Abstract, 2006. http://sunzi.lib.hku.hk/hkuto/record/B36396801.

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41

Cooke-O'Connor, Laura Elizabeth. "Evaluation of an intervention for siblings of children with chronic illness or disability : a pilot study /". Title page and table of contents only, 2003. http://web4.library.adelaide.edu.au/theses/09PMC/09pmcc7731.pdf.

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Thesis (M.Psych.(Clin.)) -- University of Adelaide, Dept. of Psychology, 2003.
"17 April 2003" "Research report attachments submitted in partial fulfilment of the requirements for the Master of Psychology (Clinical). Includes bibliographical references.

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42

Cavanagh, Ellyn Elizabeth. "Maintaining a childhood : a phenomenologic study of family experiences providing home care for chronically ill, technology-dependent children /". Thesis, Connect to this title online; UW restricted, 1999. http://hdl.handle.net/1773/7373.

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43

Tallon, Mary Margaret. "The formative evaluation of a psychosocial assessment framework for families of children who are seriously or chronically ill". Thesis, Curtin University, 2017. http://hdl.handle.net/20.500.11937/53043.

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Abstract (sommario):

The families of children who are seriously ill frequently experience distress that affects their ability to cope. A formative evaluation of a family psychosocial assessment framework was undertaken using mixed methods. The attitudes and perspectives of primary caregivers and healthcare providers regarding psychosocial assessment were examined. Rather than finalising a new screening instrument, a conceptual framework emerged to guide communication about psychosocial issues. The emergent conceptual model supports the implementation of a skilled-based practice intervention.

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44

Lai, Cheng Cheng-gea Alice. "Parenting and children's social competence in families with hepatitis B virus (HBV) in Guangzhou : an ecological study /". Hong Kong : University of Hong Kong, 1995. http://sunzi.lib.hku.hk/hkuto/record.jsp?B14035510.

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45

Albers-Pearce, Milja Desiree. "Investigation of anxiety and a cognitive-behavioural intervenion [i.e. intervention] to reduce anxiety in chronically ill children undergoing venepunctures". Thesis, University of Canterbury. Department of Psychology, 1989. http://hdl.handle.net/10092/4745.

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Twenty two chronically ill children-aged between three and ten participated in either a cognitive-behavioural package, or a placebo play condition, to reduce their anxiety associated with venepunctures. Behavioural, physiological and self reported anxiety measures were taken. The package included information, breathing, positive self talk statements, and modelling and behavioural practice. All children except those aged three to six, in the treatment group, had low anxiety throughout. The treatment did not reduce anxiety in these young children, but other factors such as parental presence, lack of motivation or poor memory, shortage of time, interfering existing coping mechanisms could have been responsible. Age had the greatest impact on anxiety, with younger children being more anxious overall. Parents were administered the State-Trait Anxiety Inventory, and they were found to have anxiety levels similar to a general population sample. Their anxiety showed no relationship to their child's anxiety. Parents discipline methods for anxiety provoking situations were assessed by the Child Development Questionnaire. Modelling or reassurance was the most common method, followed by reinforcement of dependency. Discipline methods showed no relationship to the anxiety of the child.

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46

Spafford, Pamela Anne. "The role of illness representations in the coping and adjustment of children with asthma and their parents". University of Western Australia. School of Psychology, 2004. http://theses.library.uwa.edu.au/adt-WU2005.0046.

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The purpose of this study was to evaluate Leventhal, Nerenz, and Steele’s (1984) self-regulation model of adaptation to chronic illness when applied to children with asthma and their parents. The self-regulation model posits that illness representations influence coping, and via coping, adaptive outcomes. In the adult literature, illness representations or perceptions of symptoms, cause, time-line, consequences and control of illness have been found to be important determinants of coping and adjustment. No study, however, has examined illness representations in relation to coping and adjustment in children with a chronic illness or their parents. A second goal was to examine the influence of parents on the coping processes of their children. One hundred and twenty-eight children (7-13 years) with asthma and their 120 primary caregivers (96% mothers) were individually interviewed regarding their illness representations, and completed self-report questionnaires of coping and psychological adjustment. For both children and parents, illness representations had a direct association with psychological adjustment that was not mediated by coping. Children and parents who considered the child’s asthma to be a serious condition with frequent symptoms and serious consequences reported poor psychological adjustment, over and above any effect of the clinical severity of the illness itself. Parental illness representations and adjustment were significantly related to these same variables for children. However, after controlling for relevant demographic/asthma variables in regression analyses, only children’s illness representations remained significantly associated with parental illness representations. Children who demonstrated more negative illness representations had parents who also held more negative beliefs about asthma. These findings suggest illness representations to be an important target for psychological interventions.

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47

HOWARD, JOANNE KAY HERGENROTHER. "COGNITIVE ADAPTATION AND THE SCHOOLAGER WITH ASTHMA". Diss., The University of Arizona, 1986. http://hdl.handle.net/10150/183895.

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The purpose of this study was to examine the interrelationships among the themes of Taylor's (1983) Cognitive Adaptation Theory for schoolagers with asthma. In addition, the influence of Taylor's (1983) themes on the children's social behavior was also tested. The three themes of Taylor's (1983) theory included A Search for Meaning, Restoration of Self-Esteem, and Gaining a Sense of Self-Mastery. Two components of A Search for Meaning included the Impact of Disease and the Cause of Disease. Relating Behaviors-Cooperating Behaviors was the index of social behavior. Forty-five Caucasian children between the ages of seven and ten years who had a diagnosis of asthma and did not have any mental disability were the convenient sample. Data were collected in the children's homes. Three questionnaires and two interviews were used to measure Taylor's (1983) themes and Relating Behaviors-Cooperating Behaviors. Descriptive statistics were used to answer the research questions and provide additional findings related to the conceptual framework. Two relationships among Taylor's (1983) themes were significant (p ≤ .05). Children who reported greater impact of asthma upon their lives (Impact of Disease) reported lower self-esteem (Restoration of Self-Esteem). Children who reported greater impact of asthma upon their lives (Impact of Disease) also reported a lesser internal locus of control orientation (Gaining a Sense of Self-Mastery). The Cause of Disease was the only concept which correlated significantly with Relating Behaviors-Cooperating Behaviors and thus, influenced this concept. Children who named a cause for their asthma reported more relating and cooperating skills. The Cause of Disease explained 6.5% of the variance for Relating Behaviors-Cooperating Behaviors. Characteristics of the children's asthma condition and their families were significantly related to the themes of Taylor's (1983) theory and Relating Behaviors-Cooperating Behaviors. Developmental differences were found from age group analyses. The classification of the children's responses for the cause of asthma and reliability and validity estimation for the HIIS were also reported. Five potential sources of error which may have affected the findings included design, instrument, subject, investigator, and specification errors. Suggestions for future research with the conceptual framework were discussed.

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48

Rodriguez, Francisco Jose. "Oral mucositis in children receiving bone marrow transplantation". Thesis, Birmingham, Ala. : University of Alabama at Birmingham, 2008. https://www.mhsl.uab.edu/dt/2008m/rodriguez.pdf.

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49

Ho, Hoe Yan Greenly. "Cognitive functioning and academic achievement in children and adolescents with chronic pain /". Burnaby B.C. : Simon Fraser University, 2005. http://ir.lib.sfu.ca/handle/1892/2354.

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50

Mendoza, Nydia Judith. "Children's chronic illness and family poverty in the El Paso/Ciudad Juárez border region". To access this resource online via ProQuest Dissertations and Theses @ UTEP, 2008. http://0-proquest.umi.com.lib.utep.edu/login?COPT=REJTPTU0YmImSU5UPTAmVkVSPTI=&clientId=2515.

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