Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy
SND-ID: 2021-331-1. Version: 1. DOI: https://doi.org/10.5878/febd-dx96
Associated documentation
Citation
Creator/Principal investigator(s)
Carin Andrews
- Karolinska Institutet, Department of Women's and Children's Health
Angelina Kakooza-Mwesige
- Makerere University, Kampala, Uganda, Department of Pediatrics and Child Health
Hans Forssberg
- Karolinska Institutet, Department of Women's and Children's Health
Research principal
Karolinska Institutet
- Department of Women's and Children's Health
Description
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–
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) Show less..
Data contains personal data
Yes
Sensitive personal data
Yes
Type of personal data
Pseudonymised health data
Code key exists
Yes
Language
Unit of analysis
Population
Eighty-two children and youth with cerebral palsy aged 6–22 years, and 81 age- and sex-matched children and youth without cerebral palsy.
Study design
Observational study
Description of study design
A population-based cross-sectional study of children and youth with and without cerebral palsy.
Sampling procedure
Time period(s) investigated
2019-05-03 – 2019-12-20
Variables
46
Number of individuals/objects
163
Response rate/participation rate
100%
All children identified with cerebral palsy were possible to follow up and were willing to participate in the study
Geographic spread
Geographic location: Uganda, Sub-Saharan Africa
Geographic description: This study was performed in the Iganga Mayuge Health and Demographic Surveillance System, which includes more than 80,000 inhabitants in 65 villages in rural eastern Uganda.
Lowest geographic unit
Parish
Highest geographic unit
Town district
Responsible department/unit
Department of Women's and Children's Health
Funding 1
-
Funding agency:
Swedish Research Council
Funding 2
-
Funding agency:
Promobilia Foundation
Funding 3
-
Funding agency:
Folke Bernadotte Foundation
Funding 4
-
Funding agency:
Stiftelsen Sunnerdahls Handikappfond
Funding 5
- Funding agency: Sällskapet Barnavård
Funding 1
-
Funding agency:
Swedish Research Council
Funding 2
-
Funding agency:
Promobilia Foundation
Funding 3
-
Funding agency:
Folke Bernadotte Foundation
Funding 4
-
Funding agency:
Stiftelsen Sunnerdahls Handikappfond
Funding 5
- Funding agency: Sällskapet Barnavård
Funding 6
- Funding agency: Stiftelsen Frimurare Barnhuset
Ethics Review
Other - Ref. HS 1734
Higher Degrees Research and Ethics Committee of the School of Public Health, College of Health Sciences, Makerere University, and the Uganda National Council for Science and Technology
Research area
Medical and health sciences (Standard för svensk indelning av forskningsämnen 2011)
Neurology (Standard för svensk indelning av forskningsämnen 2011)
Pediatrics (Standard för svensk indelning av forskningsämnen 2011)
Public health, global health, social medicine and epidemiology (Standard för svensk indelning av forskningsämnen 2011)
Keywords
Children, Youth, Cerebral palsy, Uganda, Disabled children, Low-income country, Participation
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
DOI:
https://doi.org/10.1111/dmcn.14401
Kakooza-Mwesige, A., Andrews, C., Peterson, S., Wabwire Mangen, F., Eliasson, A.-C., Forssberg, H., Forssberg, H., Andrews, C., Mangen, F., Peterson, S., Kakooza-Mwesige, A., & Eliasson, A. (2017). Prevalence of cerebral palsy in Uganda : a population-based study. In The Lancet Global Health (No. S2214-109X(17)30374-1; Vol. 5, Issue 12, pp. e1275–e1282). https://doi.org/10.1016/S2214-109X(17)30374-1
DOI:
https://doi.org/10.1016/S2214-109X(17)30374-1
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. In PLOS ONE (No. e0243948; Vol. 15, Issue 12). https://doi.org/10.1371/journal.pone.0243948
DOI:
https://doi.org/10.1371/journal.pone.0243948
Andrews, C., Namaganda, L., Eliasson, A., Kakooza-Mwesige, A., & Forssberg, H. (2021). Functional development in children with cerebral palsy in Uganda: population-based longitudinal cohort study. In Developmental medicine and child neurology. https://doi.org/10.1111/dmcn.14996
DOI:
https://doi.org/10.1111/dmcn.14996
SwePub:
oai:prod.swepub.kib.ki.se:147233668
Andrews C, Namaganda LH, Imms C, Eliasson A-C, Asige E, Wanjala G, et al. Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda. Dev Med Child Neurol. 2022;00:1–11. https://doi.org/10.1111/dmcn.15323
DOI:
https://doi.org/10.1111/dmcn.15323
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