Parents of PWS Children Give Telehealth Training Positive Reviews

A six-week remote parent-training intervention for children with Prader-Willi syndrome (PWS) got good acceptability and satisfaction scores from parents, supporting the use of telehealth to manage the social and emotional impairments of children with this rare condition, a study reports.

The study, “The PRETEND Program: Evaluating the Feasibility of a Remote Parent-Training Intervention for Children With Prader-Willi Syndrome,” was published in the American Journal on Intellectual and Developmental Disabilities.

Children with PWS show impairments in social and emotional functioning. They have deficits in social responsiveness and competence, have trouble regulating emotions, often perform repetitive behaviors, and exhibit impaired pretend play abilities and parent-child interactions.

Parents can play a crucial role during their children’s formative years, because “early parent-child interactions have been shown to strongly impact the emergence of skills relating to understanding others’ mental states, empathy, social cognition, and emotional understanding,” the researchers said.

However, because of the low prevalence of PWS (estimated between 1 in 16,062 to 1 in 25,000 people in the U.S.), scientists face obstacles in recruiting enough study participants to develop effective behavioral interventions.

Patients and their families may also live far from specialists or medical centers with the expertise to manage this rare condition.

Telehealth facilitates patient assessment and intervention services, while reducing care barriers such as distance and cost of in-person trials.

In the study, researchers at Case Western Reserve University assessed the feasibility and acceptability of using videoconferencing software to help parents improve the behavioral, emotional, and social skills of their children.

The study involved 15 PWS children (seven males and eight females, ages 3-6, mean age 4.39 years) and their parents.

The intervention program, known as PRETEND (Parent-focused Remote Education To Enhance Development), involved twice-weekly sessions of 30-45 minutes each for six weeks. The sessions focused on building four core areas: engagement and play; improving problem behaviors; emotional understanding and coping skills; and social skills and peer interactions.

At the end, parents were asked to rate the effectiveness, acceptability, and usability of the program on a six-point scale, and their overall satisfaction on a five-point scale.

Thirteen of the 15 families enrolled in the program successfully completed the intervention. However, no family was able to follow the twice-weekly sessions across all six weeks; the biggest factor that affected program completion was the time the parents felt they had to dedicate to the program.

Nonetheless, results showed that the mean scores obtained were 5.57 for the program’s effectiveness, 5.64 for acceptability, 4.81 for usability, and 4.75 for overall satisfaction.

Parents reported the most difficulties with the technological aspects of the program, so usability received the lowest score.

According to the team, all parents who completed the program reported a desire to engage in this type of intervention again.

‘‘I saw gains in skill areas relating to structuring play, engaging, using emotion words, organizing stories, problem solving through playing, and being flexible and creative with toys and different objects while playing with my child,’’ a parent involved in the study reported.

Based on these results, the team concluded: “Preliminary results suggest that telehealth is a feasible and acceptable mode through which to deliver parent training intervention to parents of preschoolers with PWS,” an approach which “may drastically help families connect to treatment resources earlier and more easily than before, which can then positively impact child outcomes.”

The team also emphasized that key factors should be taken into consideration in remote interventions for parents of PWS children, “specifically in regard to ease of accessing the online software, finding time for sessions amidst an already packed schedule of therapies and services for their child, and also the need to practice the skills discussed within the video sessions.”