Mothers' experiences of living worried when parenting children with spina bifida

The Main Problems of Parents of a Child With Epidermolysis Bullosa

“…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.…”

“…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.…”

Health-related quality of life is compromised in individuals with spina bifida: results from qualitative and quantitative studies

“…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].…”

“…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.…”

“…Total prevalence rate across Europe is estimated at 9.8 per 10,000 births, the Ukraine has the highest rate of NTDs with 20.5 per 10,000, with Croatia and Italy reported to have lower rates around 4.6 NTD births per l0,000 [11]. With advances in treatment life expectancy of SB patients is rising, with 85% of children born with SB surviving into adulthood [12,13].…”