Abstract
BackgroundVery little is known on outcome measures for children with spina bifida (SB) in Zambia. If rehabilitation professionals managing children with SB in Zambia and other parts of sub-Saharan Africa are to instigate measuring outcomes routinely, a tool has to be made available. The main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with SB in Zambia.MethodsA mixed design method was used for the study. Domains were identified retrospectively and confirmation was done through a systematic review study. Items were generated through semi-structured interviews and focus group discussions. Qualitative data were downloaded, translated into English, transcribed verbatim and presented. These were then placed into categories of the main domains of care deductively through the process of manifest content analysis. Descriptive statistics, alpha coefficient and index of content validity were calculated using SPSS.ResultsSelf-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. A total of 100 statements were generated and 78 items were selected deductively. An alpha coefficient of 0.98 was computed and experts judged the items.ConclusionsThe new functional measure with an acceptable level of content validity titled Zambia Spina Bifida Functional Measure (ZSBFM) was developed. It was designed to evaluate effectiveness of interventions given to children with SB from the age of 6 months to 5 years. Psychometric properties of reliability and construct validity were tested and are reported in another study.
Highlights
Spina Bifida (SB) is one of the congenital malformations of the central nervous system that is a major and unrecognised expensive public health problem in much of Africa (Adeleye, Magbagbeola & Olowookere 2010; Blenchowe et al 2010; Mweshi et al 2015)
Validity was measured by using both Item Content Validity Indices (I-content validity index (CVI)) and Scale Content Validity Indices (S-CVIs) (Waltz et al 2010)
Functional independence in children can be measured in three areas of self-care, mobility and social cognition using the WeeFIM, Pediatric Evaluation of Disability Inventory (PEDI) and other measures
Summary
Spina Bifida (SB) is one of the congenital malformations of the central nervous system that is a major and unrecognised expensive public health problem in much of Africa (Adeleye, Magbagbeola & Olowookere 2010; Blenchowe et al 2010; Mweshi et al 2015). Children with SB need specialists who can address problems related to hydrocephalus, neurogenic bowel and bladder, mobility, learning disabilities and functional limitations They require generalists who can help educate caregivers and address health promotion issues, including nutrition and exercise.
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