A qualitative study: Barriers and support for participation for children with disabilities

Abstract

BackgroundThis qualitative–exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers’ perspective.ObjectivesThe objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future.MethodsData were collected through semi-structured interviews with each mother in her home. Results: Findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers’ personal resourcefulness. Mothers identified their child’s school, their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child’s abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to a lack of acceptance and access to education.ConclusionThe findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.

Comparative study of home and community participation among children with and without cerebral palsy

“…Our finding could be interpreted as a reflection of acceptance of their child's condition and its consequence as permanent one, as well. Other studies found that expectations of parents of children with CP regarding their children's future independence, acceptance by society, access to education, and success in different life areas were low, most likely representing their realistic expectations and awareness of the challenges ahead (Hansen et al, 2013;Magill-Evans, Darrah, Pain, Adkins, & Kratochvil, 2001). Accordingly, it is necessary to supplement this finding qualitatively and clarify the reasons of parents' satisfaction with the children's current diversity in community participation.…”

“…Secondly, caring for a child with developmental disabilities, including CP, often presents a burden and sets new and intense requirements from parents (McCann, Bull, & Winzenberg, 2012). Frequent hospitalization, getting out of bed at night to take care of the child, physically and time-consuming feeding and dressing are just some of the activities that parents do every day (Bulić, Joković Oreb, & Nikolić, 2012;Hansen, Siame, & van der Veen, 2013;Tadema, Vlaskamp, & Fonteine, 2006). Previous studies reported various difficulties in everyday care for a child with profound intellectual and multiple disabilities, including CP, which parents had to take upon themselves (Bulić et al, 2012;Tadema et al, 2006).…”

The effectiveness of community-based rehabilitation as a strategy for improving quality of life and disaster resilience for children with disability in rural Zimbabwe

“…Recent studies suggest that people with disabilities represent 10% – 12% of the world’s population (Busapathumrong, 2013 ; Jackson & Mupedziswa 1988). The United Nations Children’s Fund (UNICEF 2013 ) estimates that between 5% and 10% of all children in Africa are children with disabilities where 90% of these children do not attend school and are thus less likely to engage in other opportunities for social participation (Global Partnership for Children 2012 ; Hansen, Siame & Van der Veen 2014 ). In Zimbabwe, the only extensive data on the incidence of disability is provided by the National Disability Survey conducted in 1981 as part of the programme for the International Year of Disabled Persons.…”

Titles: Caregiver's perspectives on facilitators and barriers of active participation in cerebral palsy rehabilitation in North West Nigeria: a qualitative study

“…For the sample size, there are no hard and fast rules for sample size estimation in qualitative research as this type of study approach maintains some degrees of openness (21). Consequently, the number of participants available was used until theoretical saturation was attained.…”