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

Abstract

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.

Hybrid Telehealth Pediatric Constraint Induced Movement Therapy Compared to In-person Intervention: A Case Series

“…This further highlights the need to communicate with families and individualize schedules to their needs. It has also been suggested in the literature to perform a comprehensive needs assessment prior to initiating therapy to identify and problem solve around issues that may arise with scheduling or intensive therapy (Verhaegh et al, 2022). This telehealth hybrid model worked well for both cases in the Infant CIMT Protocol because it was a one-hour session.…”

“…This review reported that available evidence was limited to mostly qualitative research to date ( Knapp et al, 2023 ). Despite the small body of evidence, studies exploring the feasibility of telehealth home programs and effectiveness of parent coaching models in rehabilitation have demonstrated positive patient and caregiver feedback ( Beckers et al, 2020 ; Verhaegh et al, 2022 ). In addition, qualitative physical therapy research has reported benefits to hybrid models of care (a protocol with a combination of onsite and telehealth visits) in pediatrics that include improved patient communication, better understanding of the home environment and improved access to and continuity of care ( Hall et al, 2022 ).…”

Ugdomojo Vadovavimo Taikymo Vaikų Raidos Sutrikimų Ankstyvoje Reabilitacijoje Tyrimas

“…Buvo pastebėta, kad pagerėjo tėvų bendravimo įgūdžiai ir vaikų vystymasis. Įrodymai patvirtino tėvų ir tiesioginės specialisto intervencijos derinimą, siekiant kuo labiau pagerinti vaiko raidą [15]. P. Harniess ir bendraautoriai [5] teigia, kad bendrai specialistų ir tėvų sukurti tikslai ir namų programos (įskaitant mokomąją medžiagą) su realiais laiko įsipareigojimais, padeda tėvams patikėti ankstyvosios intervencijos įgyvendinamumu ir nauda.…”

How technology shapes advice: professional–parent interaction in a digital pediatric treatment

“…Digitalization of paramedical treatments does not only take place in adult care but also in pediatric care, where communication about treatment primarily involves professionals and parents of underage patients. An example of a pediatric TET is the home-based upper limb training program using a video coaching approach for infants and toddlers with cerebral palsy (Verhaegh et al, 2022(Verhaegh et al, , 2023. In this treatment, interaction between paramedical professionals and parents of young patients takes place via a secure website.…”

“…Previous research on TET shows, among other things, that it is effective for the rehabilitation of very young children with this type of motor disability (Verhaegh et al, 2023) and that parents evaluate the treatment positively (Verhaegh et al, 2022). However, there is a lack of research addressing the interactional nature of TET and the impact of remoteness and use of technology on the interaction between professionals and parents.…”