Delaktighet för barn och unga med cerebral pares i Uganda: aktivitetsnärvaro och medverkan jämfört med jämnåriga utan cerebral pares Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy 2021-331-1-1 https://doi.org/10.5878/febd-dx96 Swedish National Data Service Svensk nationell datatjänst Landing page Delaktighet för barn och unga med cerebral pares i Uganda: aktivitetsnärvaro och medverkan jämfört med jämnåriga utan cerebral pares Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy 2021-331-1-1 https://doi.org/10.5878/febd-dx96 10.1111/dmcn.14401 10.1016/S2214-109X(17)30374-1 10.1371/journal.pone.0243948 oai:prod.swepub.kib.ki.se:147233668 10.1111/dmcn.14996 10.1111/dmcn.15323 Andrews, Carin Andrews, Carin Kakooza-Mwesige, Angelina Kakooza-Mwesige, Angelina Forssberg, Hans Forssberg, Hans 2017-05474_VR 2017-05474_VR Swedish National Data Service Svensk nationell datatjänst Landing page CHILDREN BARN YOUTH UNGDOM Cerebral Palsy Cerebral pares Uganda Uganda Disabled Children Barn med funktionsvariation AIM: To compare participation attendance and involvement of children and youth (C&Y) with and without cerebral palsy (CP) in a low-income area of eastern Uganda. METHOD: Eighty-two C&Y with CP aged 6–22 years and 81 age- and sex-matched C&Y without CP participated in the study. Data on attendance and involvement in 20 home and community activities were obtained using the instrument "Picture My Participation". Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. RESULTS: Pooled attendance across all activities was significantly lower in C&Y with CP than in C&Y without CP (P<0.001) and for each activity item (P=0.004 to P<0.001). Effect sizes for each activity were 0.2–0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the CP group (P<0.001) and for each activity (P=0.014 to P<0.001). Effect sizes for each activity were 0.2–0.5. C&Y at GMFCS level I–II had higher attendance (P<0.001) and involvement (P=0.023) than those at GMFCS III–V. INTERPRETATION: Participation attendance and involvement of young people living with CP in Uganda were restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them. Eighty-two children and youth with cerebral palsy aged 6-22 years and 81 age- and sex-matched children and youth without CP participated. Motor function, self-care skills, and social functions were assessed, and caregivers were interviewed on behalf of their children using Picture My Participation (PMP). PMP measures participation in 20 home and community activities, and was developed for use in low and middle-income countries. The instrument consists of four sections measuring attendance, involvement, importance, and facilitators/barriers: https://ju.se/en/research/research-groups/child/projects/picture-my-participation.html We used the first two sections in this study. The interviews were conducted by a social worker living in the area and familiar with the culture and language. The dataset consists of three (3) files: • Data_set_PMP-I_Andrews_et_al.xlsx • Variable_list_PMP-I_Andrews_et_al.pdf • Picture_My_Participation_2019.pdf (the survey used) Målet med denna studie är att jämföra deltagande inom domänerna närvaro och medverkan för barn och unga med cerebral pares (CP) i ett låginkomstområde i östra Uganda. Åttiotvå barn och unga med CP och 81 barn och unga utan CP deltog i studien (alla 6-22 år gamla). Information om deltagande i närvaro och medverkan samlades in för 20 aktiviteter genom instrumentet "Picture my participation". Åttiotvå barn och ungdomar mellan 6-22 år med cerebral pares och 81 ålders- och köns-matchade barn och ungdomar utan cerebral pares deltog i studien. Motorisk funktion, egenvård och sociala funktioner undersöktes och målsmän intervjuades på deras barns vägnar med Picture My Participation (PMP). PMP mäter delaktighet i 20 aktiviteter i hemmet och samhället, och har utvecklats för att användas i låg- och medelinkomstländer. Instrumentet består av fyra sektioner som mäter deltagande, medverkan, betydelse och facilitatorer/barriärer: https://ju.se/en/research/research-groups/child/projects/picture-my-participation.html I denna studie så använde vi de två första sektionerna. Intervjuerna utfördes av en socialarbetare som bodde i studieområdet och är familjär med kulturen och språket. Datasetet består av tre (3) filer: • Data_set_PMP-I_Andrews_et_al.xlsx • Variable_list_PMP-I_Andrews_et_al.pdf • Picture_My_Participation_2019.pdf (enkäten som använts) 2019-05-03 2019-12-20 Uganda Uganda IndividualIndividual IndividIndivid Eighty-two children and youth with cerebral palsy aged 6–22 years, and 81 age- and sex-matched children and youth without cerebral palsy. Åttiotvå barn och unga med cerebral pares 6-22 år gamla och 81 ålders- och köns-matchade barn och unga utan cerebral pares. Numeric Text The participants were 82 children with cerebral palsy identified in a three-stage population-based screening in 2015 of all children living in a specific geographic area in eastern Uganda, as well as 81 age and sex-matched peers without cerebral palsy living in the same area.The participants were 82 children with cerebral palsy identified in a three-stage population-based screening in 2015 of all children living in a specific geographic area in eastern Uganda, as well as 81 age and sex-matched peers without cerebral palsy living in the same area. Deltagarna i denna studie var 82 barn med cerebral pares identifierade i en tre-stegs populationsbaserad undersökning under 2015 för alla barn som bodde i ett specifikt geografiskt område i östra Uganda, samt 81 barn utan cerebral pares som bodde i samma område och matchades för ålder och kön.Deltagarna i denna studie var 82 barn med cerebral pares identifierade i en tre-stegs populationsbaserad undersökning under 2015 för alla barn som bodde i ett specifikt geografiskt område i östra Uganda, samt 81 barn utan cerebral pares som bodde i samma område och matchades för ålder och kön. Total universe/Complete enumerationTotal universe/Complete enumeration Hela populationen/total räkningHela populationen/total räkning InterviewInterview IntervjuIntervju Access to data through SND. Access to data is restricted. Åtkomst till data via SND. Tillgång till data är begränsad. restrictedAccess Andrews, C., Kakooza-Mwesige, A., Almeida, R., Swartling Peterson, S., Wabwire-Mangen, F., Eliasson, A.-C., Forssberg, H., Peterson, S., Forssberg, H., Peterson, S., Andrews, C., Eliasson, A., Kakooza-Mwesige, A., Wabwire-Mangen, F., & Almeida, R. (2020). Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda : a population-based study. In Developmental Medicine & Child Neurology (Vol. 62, Issue 4, pp. 454–462). https://doi.org/10.1111/dmcn.14401 Andrews, C., Kakooza-Mwesige, A., Almeida, R., Swartling Peterson, S., Wabwire-Mangen, F., Eliasson, A.-C., Forssberg, H., Peterson, S., Forssberg, H., Peterson, S., Andrews, C., Eliasson, A., Kakooza-Mwesige, A., Wabwire-Mangen, F., & Almeida, R. (2020). Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda : a population-based study. 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H., Almeida, R., Kajungu, D., Wabwire-Mangen, F., Peterson, S., Andrews, C., Eliasson, A. C., Kakooza-Mwesige, A., Forssberg, H., Namaganda, L. H., Forssberg, H., Eliasson, A., Namaganda, L., Wabwire-Mangen, F., Almeida, R., Kajungu, D., Kakooza-Mwesige, A., Andrews, C., & Peterson, S. (2020). Excessive premature mortality among children with cerebral palsy in rural Uganda : A longitudinal, population-based study. In PLOS ONE (No. e0243948; Vol. 15, Issue 12). https://doi.org/10.1371/journal.pone.0243948 Namaganda, L. H., Almeida, R., Kajungu, D., Wabwire-Mangen, F., Peterson, S., Andrews, C., Eliasson, A. C., Kakooza-Mwesige, A., Forssberg, H., Namaganda, L. H., Forssberg, H., Eliasson, A., Namaganda, L., Wabwire-Mangen, F., Almeida, R., Kajungu, D., Kakooza-Mwesige, A., Andrews, C., & Peterson, S. (2020). Excessive premature mortality among children with cerebral palsy in rural Uganda : A longitudinal, population-based study. 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