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. 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. 2025-9-1 2017-05474 https://doi.org/10.48723/a8yn-zs31 Swedish National Data Service Svensk nationell datatjänst Landing page 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. 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. 2025-9-1 2017-05474 https://doi.org/10.48723/a8yn-zs31 oai:swepub.ki.se:1032488 10.1111/dmcn.16368 Forssberg, Hans Forssberg, Hans Kakooza Mwesige, Angelina Kakooza Mwesige, Angelina F 9/20 F 9/20 2017-05474_VR Swedish National Data Service Svensk nationell datatjänst Landing page CEREBRAL PALSY CEREBRAL PARES Cerebral Palsy Cerebral pares Medication and treatment Medicinering och behandlingar Physical fitness and exercise Fysisk form och träning 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 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. Uganda Uganda IndividualIndividual IndividIndivid A total of 100 children and young people with CP aged 2-23 years were included (52 males) together with their primary caregivers. Most were from a population-based cohort identified in a three-stage screening at the IM-HDSS in 20152 which has been followed and studied in a series of articles.10,13-16 An additional group of 27 children between ages 2-6 years were conveniently sampled to include younger participants and achieve statistical power. CP diagnosis was confirmed by a child neurologist using the European CP surveillance definition. Totalt ingick 100 barn och unga med CP i åldern 2-23 år (52 män) tillsammans med sina primära vårdgivare. De flesta kom från en populationsbaserad kohort som identifierades i en tre-stegs-screening vid IM-HDSS 20152 som har följts och studerats i en serie artiklar.10,13-16 Ytterligare en grupp om 27 barn mellan 2-6 år år provades lämpligen för att inkludera yngre deltagare och uppnå statistisk styrka. CP-diagnosen bekräftades av en barnneurolog med den europeiska definitionen av CP-övervakning. Numeric LongitudinalLongitudinal LongitudinellLongitudinell Population based study on all children and young people with cerebral palsy aged 2-23 living at the IM-HDSS and their primary caregivers.Population based study on all children and young people with cerebral palsy aged 2-23 living at the IM-HDSS and their primary caregivers. Populationsbaserad studie av samtliga barn och unga med cerebral pares 2-23 år vid IM-HDSS och deras primåra vårdgivare.Populationsbaserad studie av samtliga barn och unga med cerebral pares 2-23 år vid IM-HDSS och deras primåra vårdgivare. Total universe/Complete enumerationTotal universe/Complete enumeration Hela populationen/total räkningHela populationen/total räkning Access to data through SND. Access to data is restricted. Åtkomst till data via SND. Tillgång till data är begränsad. restrictedAccess Asige, E., Saloojee, G., Wanjala, G., Andrews, C., Namaganda, L., Kakooza-Mwesige, A., Albus, K., Damiano, D., & Forssberg, H. (2025). Impact of the Akwenda Intervention Program for cerebral palsy on caregiver-perceived burden, stress, and psychosocial functioning: A cluster-randomized trial in Uganda. In DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. https://doi.org/10.1111/dmcn.16368 Asige, E., Saloojee, G., Wanjala, G., Andrews, C., Namaganda, L., Kakooza-Mwesige, A., Albus, K., Damiano, D., & Forssberg, H. (2025). Impact of the Akwenda Intervention Program for cerebral palsy on caregiver-perceived burden, stress, and psychosocial functioning: A cluster-randomized trial in Uganda. In DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. https://doi.org/10.1111/dmcn.16368 10.1111/dmcn.16368 oai:swepub.ki.se:1032488 2025 oai:swepub.ki.se:1032488