The Acceptability, Feasibility and Preliminary Evaluation of the Who Caregiver Skill Training Programme in Rural and Urban Kenya

Background: The global burden of mental and neurological conditions is increasing and affects more than 10% of the children in the world. In Africa, improved childhood survival has led to increasing numbers of children with neurodisability due to exposure to multiple risk factors including neonatal insult. Despite the significant burden of neurodisability in Africa there are few specialized therapists or services to support children with disabilities and their families.

Objectives: To investigate the feasibility and acceptability of the WHO’s caregiver skill training programme to improve behaviour, communication and quality of life of children with disabilities and their families.

Methods: A sequential mixed methods study where qualitative work advised quantitative work was carried out in two sites, Kilifi and Nairobi. In the first stage focus group discussion and in-depth interviews were carried out with key informants and parents of children with disability. In the second stage, 105 children living with a disability and their families were involved in a pilot randomized control trial (RCT) to evaluate the World Health Organization (WHO) Carent Skill Training (CST). While the third phase, some of the parents taking part in the CST programme provided feedback on their experience.

Results: In the first phase of the study both key informants and parents reported that the CST addresses an important need for the parents of children with disability, although there were concerns about its applicability for parents who were illiterate, given the heavy dependency on written materials. A pre-pilot study indicated that even parents with low literacy levels could adequately follow CST. In the pilot RCT, a significant proportion of the parents attended most of the sessions, rates and the preliminary analysis indicated a decrease in behavioural problem scores and depressive symptoms scores for children and families that participated in CST. In the post CST, parents articulated their satisfaction with the programme, however, the salient challenges mentioned by the caregivers mentioned with the program were focused around attendance; for example, problems finding an alternative caregiver to look after their child while they attended training sessions or lack of family support or conflicts with employers. The key challenge with CST, was the requirement for higher skilled staff than originally anticipated.

Conclusions: Our pilot study, indicates that it is feasible and acceptable to implement the CST in both rural and urban settings in Kenya. A full scale RCT is needed to establish efficacy.