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  • 1.
    Amer, Ahmed
    et al.
    University Health Care Research Center, Region Örebro County, Örebro, Sweden.
    Kakooza-Mwesige, A.
    Department of Paediatrics & Child Health, Makerere University College of Health Sciences, Kampala, Uganda; Mulago Hospital, Kampala, Uganda; Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Jarl, Gustav
    Örebro universitet, Institutionen för medicinska vetenskaper. Region Örebro län. University Health Care Research Center, Region Örebro County, Örebro, Sweden; Department of Prosthetics and Orthotics, Örebro University Hospital, Örebro, Sweden.
    Tumwine, J. K.
    Department of Paediatrics & Child Health, Makerere University College of Health Sciences, Kampala, Uganda; Mulago Hospital, Kampala, Uganda.
    Forssberg, H.
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Eliasson, A.-C.
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Hermansson, Liselotte
    Örebro universitet, Institutionen för hälsovetenskaper. Region Örebro län. Department of Prosthetics and Orthotics, Örebro University Hospital, Örebro, Sweden.
    The Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG). Part II: Psychometric properties2018Ingår i: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 44, nr 4, s. 562-571Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: The Pediatric Evaluation of Disability Inventory (PEDI) has been recommended as a gold standard in paediatric rehabilitation. A Ugandan version of PEDI (PEDI-UG) has been developed by culturally adapting and translating the original PEDI. The aim of this study was to investigate the psychometric properties of the PEDI-UG in Ugandan children by testing the instrument's rating scale functioning, internal structure, and test-retest reliability.

    Methods: Two hundred forty-nine Ugandan children (125 girls) aged 6 months to 7.5 years (Mean = 3.4, SD = 1.9) with typical development were tested using the PEDI-UG. Forty-nine children were tested twice to assess test-retest reliability. Validity was investigated by Rasch analysis and reliability by intraclass correlation coefficient.

    Results: The PEDI-UG domains showed good unidimensionality based on principal component analysis of residuals. Most activities (95%) showed acceptable fit to the Rasch model. Six misfit items were deleted from the Functional Skills scales and one from the Caregiver Assistance scales. The category steps on the Caregiver Assistance scales' rating scale were reversed but functioned well when changed from a 6-point to 4-point rating scale. The reliability was excellent; intraclass correlation coefficient was 0.87-0.92 for the domains of the Functional Skills scales and 0.86-0.88 for the domains of the Caregiver Assistance scales.

    Conclusion: The PEDI-UG has good to excellent psychometric properties and provides a valid measure of the functional performance of typically developing children from the age of 6 months to 7.5 years in Uganda. Further analysis of all items, including misfit and deleted items, in children with functional disability is recommended.

  • 2.
    Lorin, K.
    et al.
    Child and Youth Habilitation Centre, Region Örebro County, Örebro, Sweden.
    Forsberg, Anette
    Örebro universitet, Institutionen för hälsovetenskaper.
    Treatment with botulinum toxin in children with cerebral palsy: a qualitative study of parents' experiences2016Ingår i: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 42, nr 4, s. 494-502Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: In children with cerebral palsy everyday movements such as walking, standing and using one's hands can be difficult to perform because of spasticity. Botulinum neurotoxin type A (BoNT-A) are often used to reduce spasticity. The aim of this study was to describe how parents of children with cerebral palsy experienced the child's treatment with BoNT-A, how the child was affected by the treatment and how spasticity affected the child.

    Methods: A qualitative study in which 15 parents of children (6-13 years old) with cerebral palsy were interviewed about their experiences of the BoNT-A treatment. The children had received several BoNT-A treatments. An interview guide was used with topics: the child's functions before and after the treatment, the outcomes of the treatment and how they valued the BoNT-A treatment. Content analysis was used to analyse the interviews.

    Results: The analyses resulted in two themes: 'When softness comes and goes' and 'Both want and do not want'. The reduction of spasticity - softness - was described to promote motor functions, and facilitate the next step in motor development. The children were described as being more active out of their own initiative and having a happier mood. Spasticity, described as stiffness, was described to make walking more strenuous as well as interfering with activities. The BoNT-A injection procedure was perceived as troublesome and painful for the child, and sometimes traumatic for both children and parents.

    Conclusions: Treatment with BoNT-A was described as facilitating motor development and activity. The children's and the parents' negative experiences of the injection procedure should be addressed.

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