Stress in parents of children with genetic syndromes: a pilot acceptance and commitment intervention

What is it about?

Parents of children with rare genetic conditions, such as RASopathies, are at risk for high stress, which can affect both parent and child well-being. This study investigated a new remote Acceptance and Commitment Therapy (ACT) intervention for targeting parenting stress. Before testing how effective an intervention is, pilot studies are often used so researchers can elicit participant feedback and ensure the study is feasible. We used an ACT model of therapy with the goal of increasing flexibility and ability to cope with stress. This pilot followed eight parents of children with RASopathies and tracked their daily ratings of stress and other important ACT concepts, like mindfulness and acceptance.

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Photo by Mike Scheid on Unsplash

Photo by Mike Scheid on Unsplash

Why is it important?

Seven out of eight parents completed all parts of the intervention while endorsing liking the study and finding it helpful. Parents gave us feedback on how to improve the intervention. Therefore, we deemed our pilot feasible and acceptable, and parent feedback was incorporated into the next stage of the study, the randomized control trial (RCT).  We are currently conducting the RCT with more participants to test how effective the remote ACT intervention is at reducing stress and increasing psychological flexibility in these parents.

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