10.5878/febd-dx96
Andrews, Carin
Carin
Andrews
0000-0002-9928-4423
Department of Women's and Children's Health , Karolinska Institutet
Kakooza-Mwesige, Angelina
Angelina
Kakooza-Mwesige
0000-0002-1189-3671
Department of Pediatrics and Child Health, Makerere University, Kampala, Uganda
Forssberg, Hans
Hans
Forssberg
0000-0003-2069-6618
Department of Women's and Children's Health , Karolinska Institutet
Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy
Delaktighet för barn och unga med cerebral pares i Uganda: aktivitetsnärvaro och medverkan jämfört med jämnåriga utan cerebral pares
Karolinska Institutet
2022
children
barn
youth
ungdom
Cerebral Palsy
Cerebral pares
Uganda
Uganda
Disabled Children
Barn med funktionsvariation
childhood
barndom
age groups
åldersgrupper
Africa, Eastern
Östafrika
Brain Damage, Chronic
Hjärnskada, kronisk
Disabled Persons
Personer med funktionsvariation
Persons
Personer
Brain Diseases
Hjärnsjukdomar
Chronic Disease
Kronisk sjukdom
Africa South of the Sahara
Afrika söder om Sahara
Central Nervous System Diseases
Centrala nervsystemets sjukdomar
Africa
Afrika
Disease Attributes
Sjukdomssymtom
Nervous System Diseases
Nervsystemets sjukdomar
Geographic Locations
Geografiska namn
Pathologic Processes
Patologiska processer
Pathological Conditions, Signs and Symptoms
Patologiska tillstånd, tecken och symtom
Low-income country
Låginkomstland
participation
delaktighet
Medical and Health Sciences
Medicin och hälsovetenskap
Neurology
Neurologi
Pediatrics
Pediatrik
Public Health, Global Health, Social Medicine and Epidemiology
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
Clinical Medicine
Klinisk medicin
Health Sciences
Hälsovetenskap
2022-06-29
2019-05-03/2019-12-20
2019-05-03/2019-12-20
eng
10.5878/qsy3-pq97
10.1111/dmcn.14401
10.1016/S2214-109X(17)30374-1
10.1371/journal.pone.0243948
10.1111/dmcn.14996
10.1111/dmcn.15323
925.18 KiB
46 variables
163 cases
1
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)
Uganda
Sub-Saharan Africa
Africa
Swedish Research Council
https://ror.org/03zttf063
Promobilia Foundation
https://ror.org/00fb4ms10
Folke Bernadotte Foundation
https://ror.org/02jxgpt62
Stiftelsen Sunnerdahls Handikappfond
https://ror.org/04nqfdt43
Sällskapet Barnavård
Stiftelsen Frimurare Barnhuset