Objective:
RASopathies are a group of genetic conditions that produce a wide range of manifestations including failure to thrive, congenital heart disease, an increased risk of cancer, and cognitive problems. Parents of children with medical conditions often experience stress; thus, interventions targeting parenting stress in this population are crucial. This internal pilot study investigated the feasibility and acceptability of a remote acceptance and commitment therapy (ACT) intervention for parents of children with RASopathies (e.g., neurofibromatosis Type 1, Noonan syndrome, Costello syndrome). Internal pilots enable researchers to garner participant feedback and conduct a small-scale intervention before transitioning into a randomized controlled trial (RCT) to determine efficacy.
Method:
This 8-week intervention included three individual ACT telehealth sessions and weekly videos delivered via a smartphone app. Participants received ecological momentary assessment surveys through the app that measured stress, self-compassion, and various ACT concepts (e.g., parenting values, present-moment awareness). Feasibility was determined by engagement with weekly videos and follow-up sessions. A red/amber/green benchmark system was used to determine whether to proceed to the RCT. Acceptability was measured through participant feedback.
Results:
The recruitment target (n = 8) was met within 4 months, and seven participants completed the intervention. Seven participants attended all sessions and viewed all videos. All participants who completed the intervention reported enjoying the study and provided qualitative feedback for improvement.
Conclusion:
Feasibility targets were met and acceptability was high, allowing continuation into an RCT to determine efficacy. Preliminary results suggest that the intervention may provide clinically meaningful effects.
Implications for Impact Statement
This study examined the overall feasibility of conducting an intervention targeting stress in parents of children with genetic syndromes. Most parents completed the study and reported enjoying the intervention; self-care and connection with child increased and present-moment awareness did not. Thus, we are transitioning to the randomized controlled trial where we will examine efficacy.
