The breakthroughs of caregivers in parent-implemented interventions for children with neurodevelopmental disorders: an exploratory qualitative study

Background Parent-implemented intervention (PII) trains caregivers to be the interventionists to offer tailored learning opportunities at home and is used to promote the positive development of children with neurodevelopmental disabilities. Its effectiveness hinges not only on learning and implementing the strategies, but also on the beliefs, wellbeing and capacities of the caregivers. The existing literature focused on the acquisition and application of skills, little is known about the inner experiences and transformation of caregivers. This study explored the changing processes of caregivers and focused especially on their breakthroughs. Methods Twenty-two caregivers participated in five semi-structured focus groups in Hong Kong. They had all completed the localized version of the World Health Organization Caregiver Skills Training. Reflexive thematic analysis was adopted to analyze the qualitative data and construct codes and themes. Results There were three major breakthroughs which caregivers experienced leading to positive outcomes for themselves and for their children. The first one was the acquisition of self-care practices that helped caregivers recognize their own physical and emotional exhaustion and cultivate capacities for childcare. The second was on environmental settings, in which the caregivers learnt to adjust the home setup to promote parent-child engagement and the building of play routines. The third was on developing the discernment of the window to intervene. Caregivers learnt to adjust their pace to align with their children’s, follow into the children’s world and cultivate empathy towards the young. Being able to discern when and how to create teaching opportunities allowed caregivers to be more relaxed, and children enjoyed interacting with their caregivers more. Conclusions This study unveiled the transformation processes of caregivers in a PII and identified the key factors promoting positive outcomes in them and in their children. Through focusing on breakthroughs, it also sheds light on the inner struggles and rewards the parents experienced as the primary caregivers and interventionists. It invites clinical professionals to consider the wellbeing of caregivers as one of the key social determinants of the success of PIIs, and explore how self-care, environmental setup, and discernment to intervene shape immediate and long-term outcomes.