1999
DOI: 10.1016/s0882-5963(99)80004-9
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Mothers' experiences of living worried when parenting children with spina bifida

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Cited by 30 publications
(23 citation statements)
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References 17 publications
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“…Aspects of these studies that are in line with our study include parents' difficulties with staring and difficult remarks made to the child, unexpected life changes, time-consuming care, relationship problems, and the ignorance of care providers. In contrast to the rare skin disorder EB, parental experiences with more regular childhood chronic illnesses, such as cancer, cystic fibrosis, congenital heart disease, spina bifida, or diabetes are far more frequently discussed in the literature (e.g., Cohen, 1995;Diehl, Moffitt, & Wade, 1991;Fisher, 2001;Hewitt-Taylor, 2005;Ievers, & Drotar, 1996;Johnson, 2000;Monsen, 1999;Ratcliffe, Harrignan, Haley, Tse, & Olson, 2002). In the following sections, we will therefore bring out the similarities and differences between previous EB research and other chronic childhood illnesses, including another chronic skin disorder, atopic dermatitis.…”
Section: Discussionmentioning
confidence: 99%
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“…Aspects of these studies that are in line with our study include parents' difficulties with staring and difficult remarks made to the child, unexpected life changes, time-consuming care, relationship problems, and the ignorance of care providers. In contrast to the rare skin disorder EB, parental experiences with more regular childhood chronic illnesses, such as cancer, cystic fibrosis, congenital heart disease, spina bifida, or diabetes are far more frequently discussed in the literature (e.g., Cohen, 1995;Diehl, Moffitt, & Wade, 1991;Fisher, 2001;Hewitt-Taylor, 2005;Ievers, & Drotar, 1996;Johnson, 2000;Monsen, 1999;Ratcliffe, Harrignan, Haley, Tse, & Olson, 2002). In the following sections, we will therefore bring out the similarities and differences between previous EB research and other chronic childhood illnesses, including another chronic skin disorder, atopic dermatitis.…”
Section: Discussionmentioning
confidence: 99%
“…Several studies indicate that caring for a chronically ill child involves constant uncertainty, although most of the time this is at a subconscious level (Cohen, 1993(Cohen, , 1995Diehl et al, 1991;Fisher, 2001;Monsen, 1999). In a study on parental uncertainty, Cohen (1995) identified seven triggers that had the van Scheppingen et al / Child With Epidermolysis Bullosa 553 potential to cause a heightened level of uncertainty for parents of a chronically ill child, including (1) routine medical appointments, (2) body variability, (3) key words and provocative questions, (4) changes in therapeutic regime, (5) evidence of negative outcomes, (6) new developmental demands, and (7) nighttime.…”
Section: The Unpredictability Of the Illnessmentioning
confidence: 99%
“…Of the remaining 166 articles, a total of 72 articles relating to individuals with an NTD were reviewed. Within these papers, 41 focused on quantitative research [13,19,[23][24][25][26], 15 on qualitative research [9,12,[75][76][77][78][79][80][81][82][83][84][85][86][87][88] and 10 used both quantitative and qualitative methods [22,86,[89][90][91][92][93][94][95][96]. Six review papers were excluded as they did not present original data [28,[97][98][99][100][101].…”
Section: Resultsmentioning
confidence: 99%
“…There were 15 studies that used qualitative methods [9,12,[75][76][77][78][79][80][81][82][83][84][85][86][87][88]. Their findings indicated that SB affected the following aspects of patients' lives: self-image [9], feelings and emotions [75,77], social life [9,22,69,78], acceptance [9], independence [9], impact on school [75,77,85] impact on parents and siblings [9,76,[78][79][80] and concerns about the future [12,80,82,87]. In addition, patients' ability to cope with and adapt to SB has also been well documented.…”
Section: Qualitative Perspectivementioning
confidence: 99%
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