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- Nahal, M. S. H., et al.
(författare)
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Assessment of health status in adolescents with spina bifida in the West Bank, Palestine: sense of coherence and self-perceived health
- 2022
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:19, s. 5479-5486
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Tidskriftsartikel (refereegranskat)abstract
- Purpose To assess self-perceived health and sense of coherence (SOC) in adolescents with spina bifida (SB) in the West Bank, Palestine, compared to a healthy reference group. Further, to assess the association between impairment levels in the adolescents with SB and their self-perceived health and SOC. Methods Fifty adolescents with SB and 150 healthy adolescents completed measures of self-perceived health - the Pediatric Quality of Life Inventory (PedsQL(TM) 4.0) - and SOC. The rehabilitation center nurses identified the physical impairments of the adolescents with SB from their medical records, and classified them by impairment severity. Results Adolescents with SB reported lower self-perceived health (PedsQL median 55, IQR 42-67), than the reference group (median 85, IQR 74-90), p < 0.001, and lower SOC (median 47, IQR 44-50) than the reference group (median 55, IQR 44-61), p < 0.001. Impairment level was inversely associated with both self-perceived health and SOC. Conclusions The low self-perceived health and SOC among adolescents with SB in Palestine indicate the need for collaboration between policy makers and providers to improve these adolescents' physical and social environment and to promote the rehabilitation services provided for them.
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| 3. |
- Sudki Nahal, Maha, et al.
(författare)
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Self-perceived health among children with spina bifida in the West Bank: a cross-sectional study
- 2021
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Ingår i: Lancet, vol. 398, special issue, S39.. - 1474-547X.
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Konferensbidrag (refereegranskat)abstract
- 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. METHODS: A 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 (rs=-0·65, p<0·0001) and the presence of hydrocephalus (rs=-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.None.
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