The overall aim in this thesis was to describe the lived experiences of children with spina bifida (SB) and their mothers while living under specific social and cultural conditions in West Bank, Palestine. A further aim was to gain knowledge about the impact of SB on self-perceived health and sense of coherence (SOC) among a group of children and adolescents with SB in comparison to their healthy peers.
Spina bifida (SB) is the second most common birth defect worldwide. Mothers of children with SB face extraordinary challenges due to the complicated conditions and disability of their children. Little is known about the impact of these challenges on the mothers' well-being, particularly in Middle Eastern culture, where chronic illness and disability are perceived as a stigma, and care of disabled children has traditionally been the responsibility of the mother. The aim of this study was to illuminate mothers' lived experience of having a child with SB in Palestine. Twenty Arab-Muslim mothers living in Palestine were purposefully recruited from several rehabilitation centers in Palestine and were interviewed in 2014. The transcribed interviews were analyzed according to phenomenological hermeneutics. The mothers' experiences were described in the main theme: From feeling broken to looking beyond broken. Four themes were interwoven: living with constant anxiety, living with uncertainty, living with a burden, and living with a difficult life situation. These findings highlight the burden and resilience of the Arab-Muslim Palestinian mothers while striving to maintain the well-being of the whole family as well as facilitating the child's welfare.
Background Children born with spina bifida endure constant physical disability, which is challenging for themselves and their families. To date, the impact of spina bifida on the health-related quality of life (HRQOL; eg, physical, psychological, and social wellbeing) of these children has been assessed mainly through parent proxy reports, and self-perceived health among these children is rarely measured. This study aimed to measure self-perceived health in children with spina bifida in the West Bank, to compare this with that in a healthy reference group also from the West Bank, and to assess the potential association between self-perceived health and the level of disability in children with spina bifida. MethodsA cross-sectional study was conducted in the West Bank. The Paediatric Quality of Life Inventory (PedsQL) was administered to a convenience sample of 200 children aged 8-12 years, of whom 50 have spina bifida and 150 are healthy. For the children with spina bifida, their disability was categorised and ranked according to four aspects of impairment (mobility, bowel function, bladder function, and hydrocephaly). Data were analysed with SPSS version 24. Difference in PedsQL scores between the two groups of children was tested with the Mann-Whitney U-test. The Spearman's rank correlation coefficient was used to evaluate the association between the level of physical impairment in children with spina bifida and their self-perceived health. Written informed consent was obtained from the children's parents. The children's verbal assent was also obtained, and their right to withdraw from the study at any time was emphasised. Findings Children with spina bifida had lower overall PedsQL scores (mean 45•5, SD 14.5) than those reported by the reference group of healthy children (mean 80•0, SD 12•8). For children with spina bifida, social functioning had the lowest mean score (30•5, SD 20•8), followed by physical functioning (37•5, SD 16.6), emotional functioning (56•0, SD 17•2), and school functioning (62•6, SD 17.8), whereas the range for all of the PedsQL scores in the reference group was 71•7-84•5. The results demonstrate significant inverse associations between self-perceived health (overall PedsQL score) in children with spina bifida and both the level of mobility impairment (r s =−0•65, p<0•0001) and the presence of hydrocephalus (r s =−0•53, p<0•0001). A weak inverse association was found between self-perceived health and both bladder and bowel dysfunction. For both groups, no associations were found between demographic characteristics (age, gender, type of settlement of residence [city, village, camp]) and self-perceived health.Interpretation The findings provide insights into the importance of social support and rehabilitation services for children with spina bifida in the occupied Palestinian territory. In particular, community awareness, and education of health care providers and family members, may be important.
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