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      Parental stress and support of parents of children with spina bifida in Uganda

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      1 , , 2 , 1
      African Journal of Disability
      AOSIS

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          Abstract

          Background

          Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

          Objectives

          The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

          Methods

          A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.

          Results

          Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ ρ] = −0.245), continence ( ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management ( ρ = −0.213), receiving rehabilitative care ( ρ = −0.211), household income ( ρ = −0.178), geographical region ( ρ = −0.203) and having support from another parent in taking care of the child ( ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk ( β = −0.248), practicing bowel management ( β = −0.468) and having another adult to provide support in caring for the child ( β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).

          Conclusion

          Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

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          Most cited references38

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          Designing and conduction mixed methods research

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            Combined endoscopic third ventriculostomy and choroid plexus cauterization as primary treatment of hydrocephalus for infants with myelomeningocele: long-term results of a prospective intent-to-treat study in 115 East African infants.

            Shunt dependence is more dangerous for children in less developed countries. Combining endoscopic third ventriculostomy (ETV) with choroid plexus cauterization (CPC) was previously shown to treat hydrocephalus more effectively than ETV alone in infants < 1 year of age. The goal of this prospective study was to evaluate the effectiveness of ETV-CPC as primary treatment of hydrocephalus in infants with myelomeningocele.
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              Quantitative Social Research Methods

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                Author and article information

                Journal
                Afr J Disabil
                Afr J Disabil
                AJOD
                African Journal of Disability
                AOSIS
                2223-9170
                2226-7220
                31 May 2016
                2016
                : 5
                : 1
                : 225
                Affiliations
                [1 ]Faculty of Psychology and Educational Sciences, Ghent University, Uganda
                [2 ]Department of Paediatrics and Child Health, College of Health Sciences, Makerere University, Uganda
                Author notes
                Corresponding author: Femke Bannink, femke.bannink@ 123456ugent.be
                Article
                AJOD-5-225
                10.4102/ajod.v5i1.225
                5433456
                32694442-c441-4e30-9476-397d68cc3551
                © 2016. The Authors

                Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.

                History
                : 02 September 2015
                : 13 November 2015
                Categories
                Original Research

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