Child Developmental Disabilities, Caregivers’ Role in Kenya and Its Implications on Global Migration

Abstract

Background: This paper is a summary of the findings from an ethnographic study on child developmental disabilities conducted partly in Nairobi and Kiambu Counties in Kenya. Methods: Quantitative and qualitative data collection methods were applied for the period between mid August and mid November 2018. The study was conducted through the Kenya Institute of Special Education (KISE) situated in Nairobi County. Results: There are parents who are willing to migrate in search of better education and healthcare options for their children who have developmental disabilities (DDs). However, there are also government reforms taking place in the field of disability that may help to support the caregiving role for children with special needs. The challenges, bargaining position and power play between parents or guardians and other actors implicated in the debates on inclusion and integration of persons with developmental disabilities in Kenya has been brought to the forefront. Conclusions: In Kenya, more needs to be done to change the attitude towards disability from the medical and moral (religious/cultural) models to an approach leaning towards the social model, so that developmental disabilities are not viewed negatively.

Challenges of Caregivers Having Children with Autism in Kenya

“…Chabeda-Barthe et al . [ 23 ] noted that majority of these children with disabilities in Kenya, live in the rural areas. Another study in Nairobi revealed that majority caregivers had little support from the government.…”

“…[ 14 ] Moreover the parents' children with ASD are known to experience higher levels of parenting stress compared to the parents of normally developing children. [ 15 ] Utilizing 9 studies [Gona,[ 16 ] Cloete,[ 17 ] Elliott,[ 18 ] Gona,[ 19 ] Kamau,[ 7 ] Obaigwa,[ 20 ] Cohen,[ 21 ] Ouma,[ 22 ] and Chabeda-Barthe[ 23 ]] available in Kenya on present research problem, the researchers aimed to systematically review the challenges associated with the caregivers whose children have autism. The research question adopted for the present study was: what are the challenges associated with the caregivers whose children have autism in Kenya?…”

Perceptions of autism spectrum disorder among the Swahili community on the Kenyan coast

“…So, majority of the of the people cannot afford majority of the Mombasa community cannot afford". A recent study demonstrated that private schools in the area have fees which are beyond the reach of those who need this support (Chabeda-Barthe et al, 2019), and even then the support may not be adequate. Furthermore, Ekene and Oluoch-Suleh (2017) found that, even when children with ASD were in some form of specialist provision, these settings had only basic teaching materials.…”

Stigma, Acceptance and Belonging for People with IDD Across Cultures

“…Gender is another critical consideration for interventions [1,50], and gender differences are often more pronounced in certain cultures. At the family-level specifically, women (predominantly mothers) usually bear the greatest responsibility for supporting people with IDD, both children and adults, and can bear the brunt of stigma, for example in the Congo [12•], India [39], Kenya [51], South Africa [52••], Turkey [40] and in Arab cultures [48]. Additionally, Taderera and Hall [38••] highlight how, in Namibia, fathers often struggle to face the stigma of having a child with IDD, leaving mothers alone with the double stigma of being a single mother of a child with IDD.…”

“…Significantly, some researchers demonstrate that both special schools and inclusive schools can perpetuate stigma, for example through parents' and teachers' low expectations and negative language use [42,64]. Chabeda et al [51] found that parents of children with IDD in Kenya recommend that schools have a special needs unit and develop special education curriculum. In some countries, parents prefer to send their children to special schools as they feel their child is safer, less vulnerable to stigma and abuse, staff are more familiar with IDD [14] and education focuses more on life skills education not simply academic learning [43•].…”