The Effect of Disability on Family Life

Abstract

In the GLC Spina Bifida Survey families were interviewed at 11 years old and the effects of a child with spina bifida on the sibs, father and mother were explored. Health and behaviour of the sibs were reported as at least as good as that of sibs of normal children although mothers of disabled children were more likely to feel that the sibs had suffered. Fathers appeared to have been unrestricted in occupational choice; over the last 9 years 40% had moved upward in social class, twice as many as those who had moved downward. Parents of severely disabled children were significantly more restricted in some social activities than were those of the lightly disabled, and significantly more mothers of SB than of controls reported feeling run-down and depressed. No significant relationship could be found between measures of either health or stress in the parents and any measure of the child's disability level, dependence or amount of hospitalisation, nor with measures of social restriction. There is nevertheless a continuing need for help and support for families of disabled children, for them to make use of as they wish.

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

“…Our finding that primary caregivers of children with spina bifida were about twice as likely as other caregivers to report feeling ''blue'' more than a little of the time is consistent with the findings of one previous study (Carr et al 1983). However, a significant difference was not found within the spina bifida group classified by lesion level.…”

Emotional Adjustment of Children With Hydrocephalus and of Their Parents

“…Similarly, although many studies have addressed the distress of parents of children with hydrocephalus, there is considerable disagreement in the literature with regard to whether or not (and, if so, which) physical and psychosocial variables have any impact on the level of distress of the parents. [3][4][5] To our knowledge, no published study has yet attempted to use standardized and carefully normed questionnaires to assess adjustment after infantile hydrocephalus, or to use multivariate statistical techniques to analyze the data. Such was the purpose of the nresent investigation.…”

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.…”