Parents’ experiences with a home-based upper limb training program using a video coaching approach for infants and toddlers with unilateral cerebral palsy: a qualitative interview study

BACKGROUND: Although early home-based upper limb training programs are promising, in-depth understanding of parents’ experiences with these programs is still limited. We developed an early home-based upper limb training program for infants and toddlers (8–36 months) with or at risk of unilateral cerebral palsy using video coaching for parents. The aim of this qualitative study was to evaluate parents’ experiences with the home-based training program using a video coaching approach in order to optimize implementation strategies. METHODS: We held semi-structured interviews with parents of 13 children with unilateral cerebral palsy, who participated in our program in the period from 2014 – 2017. On average, parents had delivered two training periods of the program at the time of the interviews. Interviews were analyzed using inductive thematic content analysis. RESULTS: We identified three overarching interacting themes that shaped the experiences of parents with the program: 1) Parental learning comprising the subthemes parents’ training competencies and the facilitative and reinforcing role of video coaching, 2) Parental load comprising the subthemes flexibility of the program, supportive network, competing demands, and child’s mood and functional capacities, and 3) Parental perseverance comprising the subthemes beliefs and expectancies and seeing child’s functional improvements. CONCLUSIONS: For successful implementation of an early home-based upper limb training program using video coaching, support in delivering home-training from a therapist or from others within parents’ social network, is needed to relieve parental load. Seeing functional improvements of their child on the videos increased parents’ motivation to continue with the training. Positively phrased feedback from an occupational therapist stimulated parents’ perseverance and training competency. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-022-03432-w.