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        <identifier>oai:researchdata.se:2025-9/1</identifier>
        <datestamp>2026-03-05</datestamp>
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        <setSpec>subject:ssif:30307</setSpec>
        <setSpec>subject:ssif:302</setSpec>
        <setSpec>subject:ssif:303</setSpec>
        <setSpec>subject:ssif:3</setSpec>
        <setSpec>principal:slug:karolinska-institutet</setSpec>
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        <oai_dc:dc xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:oai_dc="http://www.openarchives.org/OAI/2.0/oai_dc/" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.openarchives.org/OAI/2.0/oai_dc/ http://www.openarchives.org/OAI/2.0/oai_dc.xsd">
          <dc:type>info:eu-repo/semantics/other</dc:type>
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          <dc:identifier>https://doi.org/10.48723/a8yn-zs31</dc:identifier>
          <dc:title xml:lang="en">Data for: Impact of the Akwenda Intervention Program for cerebral palsy on caregiver‐perceived burden, stress, and psychosocial functioning: A cluster‐randomized trial in Uganda.</dc:title>
          <dc:title xml:lang="sv">Data för:  Impact of the Akwenda Intervention Program for cerebral palsy on caregiver‐perceived burden, stress, and psychosocial functioning: A cluster‐randomized trial in Uganda.</dc:title>
          <dc:creator>https://orcid.org/0000-0003-2069-6618</dc:creator>
          <dc:creator>https://orcid.org/0000-0002-1189-3671</dc:creator>
          <dc:subject xml:lang="en">Medication and treatment</dc:subject>
          <dc:subject xml:lang="sv">Medicinering och behandlingar</dc:subject>
          <dc:subject xml:lang="en">Neurology</dc:subject>
          <dc:subject xml:lang="sv">Neurologi</dc:subject>
          <dc:subject xml:lang="en">Pediatrics</dc:subject>
          <dc:subject xml:lang="sv">Pediatrik</dc:subject>
          <dc:subject xml:lang="en">Occupational Health and Environmental Health</dc:subject>
          <dc:subject xml:lang="sv">Arbetsmedicin och miljömedicin</dc:subject>
          <dc:subject xml:lang="en">Occupational Therapy</dc:subject>
          <dc:subject xml:lang="sv">Arbetsterapi</dc:subject>
          <dc:subject xml:lang="en">Physiotherapy</dc:subject>
          <dc:subject xml:lang="sv">Fysioterapi</dc:subject>
          <dc:subject xml:lang="en">Physical fitness and exercise</dc:subject>
          <dc:subject xml:lang="sv">Fysisk form och träning</dc:subject>
          <dc:description xml:lang="en">This was a cluster-randomized, controlled, single-blinded study on a cohort of children and young people with Cerebral Palsy (CP) in the Iganga-Mayuge Health and Demographic Surveillance Site. The CP cohort was divided in two arms: one receiving the Akwenda Intervention program, and the other serving as control waiting to receive the intervention the following year. Children with seizures in both groups were provided anti-seizure medications. Outcomes were assessed prior to and after the intervention period.
The Excel sheet includes the data collected before the intervention started (2021; baseline), and after the 11 months intervention ended (2022).
Randomized, controlled, intervention trial.
Baseline data: Sociodemographic information and clinical data including anthropometry, Gross Motor Function Classification System (GMFCS) levels.
The aim of this study was to evaluate the effectiveness of the Akwenda Intervention Program in reducing burden and stress while improving health and well-being of the caregivers. Participants were assigned to an intervention or control group. The Zimbabwe Caregiver Challenges Scale (ZCCS) measured caregiver burden, and the PedsQL Family Impact Module Scales assessed quality of life. Custom-made questionnaires and video protocols evaluated caregiver knowledge and skills.

The dataset contains of the following files:
- Data_Sharing_Akwenda_Caregiver_outcome.xlsx (31.4 kB)
- Documentation_file_data_sharing_Akwenda_caregiver_outcome.docx
Details about the variables in the tables can be found in the documentation file</dc:description>
          <dc:description xml:lang="sv">Detta var en kluster-randomiserad, kontrollerad, enkelblind studie på en kohort av barn och ungdomar med Cerebral Pares (CP) i Iganga-Mayuge Health and Demographic Surveillance Site och deras vårdnadshavare. CP-kohorten var uppdelad i två armar: en som fick Akwenda-interventionsprogrammet och den andra fungerade som kontroll i väntan på att få interventionen följande år. Barn med epilepsi i båda grupperna fick anti-epileptiska läkemedel. Resultaten utvärderades före och efter interventionsperioden.
Data har samlats in innan interventionen startade (2021; baslinje) och efter att interventionen på 11 månader avslutades (2022).
Randomiserad, kontrollerad, interventionsstudie.
Basdata: Sociodemografisk information och kliniska data inklusive antropometri, nivåer för klassificeringssystem för grov motorik (GMFCS).
Syftet med denna studie var att utvärdera effektiviteten av Akwenda Intervention Program för att minska belastning och stress samt samtidigt förbättra vårdgivarnas hälsa och välbefinnande.  Zimbabwe Caregiver Challenges Scale (ZCCS) mätte bördan och stressen som vårdgivarna upplevde, och PedsQL Family Impact Module Scales utvärderade deras livskvalitet. Skräddarsydda frågeformulär och videoprotokoll utvärderade vårdgivarnas kunskaper och färdigheter.

Datasetet består av följande filer:
- Data_Sharing_Akwenda_Caregiver_outcome.xlsx (31,4 kB)
- Documentation_file_data_sharing_Akwenda_caregiver_outcome.docx

Mer information om variablerna i tabellerna finns i dokumentationsfilen.</dc:description>
          <dc:rights>info:eu-repo/semantics/restrictedAccess</dc:rights>
          <dc:coverage>UG</dc:coverage>
          <dc:rights>https://creativecommons.org/publicdomain/zero/1.0/</dc:rights>
          <dc:publisher xml:lang="en">Karolinska Institutet</dc:publisher>
          <dc:publisher xml:lang="sv">Karolinska Institutet</dc:publisher>
          <dc:date>2025-06-11T07:28:12.747959Z</dc:date>
          <dc:language>eng</dc:language>
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