Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda

Abstract

Aim: To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda.Method: Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age-and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low-and middle-income countries. Nonparametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. Results:Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p < 0.001) and for each activity item (p = 0.004 to p < 0.001). The effect sizes for each activity were 0.2 to 0.7.Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p < 0.001) and for each activity (p = 0.014 to p < 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p < 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V.Interpretation: Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify contextspecific participation barriers and develop strategies to overcome them.

Activity participation in children and young people with cerebral palsy: A neglected problem in low‐ and middle‐income countries

“…The findings of the study by Andrews et al in a rural area in Uganda on activity attendance and participation of children and young people living with CP is typical of what is happening in most parts of Sub‐Saharan Africa 3 . Furthermore, the paper demonstrated the degree of marginalization of children and young people with CP in Sub‐Saharan Africa in various activities is higher than the rest of the world.…”

“…Furthermore, the paper demonstrated the degree of marginalization of children and young people with CP in Sub‐Saharan Africa in various activities is higher than the rest of the world. Children with severe impairment (Gross Motor Function Classification System [GMFCS] levels III–V) are more restricted compared to children in levels I or II 3 . The International Classification of Functioning, Disability and Health framework emphasizes functioning (rather than impairment) to promote inclusivity of everyone in all facets of community events.…”

A Goal-Directed Program for Wheelchair Use for Children and Young People with Cerebral Palsy in Uganda: An Explorative Intervention Study

“…In fact, they would often spend all their time in one place, often lying down on a mattress or mat inside the house, unable to change position or environment, which led to exclusion and isolation. We did not specifically measure participation (for example, see [ 27 ]), but almost all goals implicated participation in various activities. The caregivers also identified several advantages of the wheelchair and few disadvantages.…”

Powered mobility in low‐ and middle‐income countries: Caregivers' perspective from Bangladesh

“…4 These children have no to low participation in daily activities, as observed in other LMICs. 1 We invited two mothers of children with CP (GMFCS level V) from Shahjadpur, Bangladesh, to share their perspective on powered mobility devices as described by Sloane et al (Video S1). Informal interviews were conducted using a semi-structured guideline adapted from the original publication.…”

“…Participation is a human right by which an individual can exercise and express their function, view, and behaviour in personal, family, and social life. However, participation is often restricted for children with severe forms of cerebral palsy (CP) (Gross Motor Function Classification System [GMFCS] level V) due to their functional impairments 1 . Sloane et al discussed caregivers' perspectives on the use of powered mobility devices and participation of children with CP (GMFCS level V) in the USA 2 .…”