A Feasibility Study of a Problem-Solving Workshop for Children Diagnosed with LQTS and Their Parents: A Pilot Study of Two Dyads

Philadelphia

Long-QT Syndrome (LQTS) is an inherited cardiac condition that predisposes individuals to cardiac arrhythmias. The clinical manifestation of LQTS is syncope, ventricular tachycardia, or a fast heart rhythm, and sudden death. Living with chronic medical conditions in adolescence comes with many critical lifestyle changes and restrictions. These lifestyle changes and restrictions may compromise psychosocial development. Social problem-solving skills have been shown to enhance one’s ability to cope with both minor and major daily stressors and minimize psychological problems associated with physical health problems. The present pilot study was developed to identify the feasibility and efficacy of a problem-solving workshop to increase problem-solving, self-efficacy, coping, and locus of control in children with LQTS. Participants in the study were 2 dyads (child and parent). Each of the children (Ages 9 & 13; 1 male & 1 female) participating in the workshop had been previously diagnosed with LQTS at least 6 months prior to participation. Parents/caregivers (Ages 40 & 43; 1 male & 1 female) were participants in the workshop to learn problem-solving skills and coach their children to learn these skills. Integrity checks were conducted via kappa coefficients to determine the degree to which group leaders adhered to the protocol and whether the techniques were implemented with fidelity. Interrater reliability ratings ĸ = 0.986 indicating very good agreement between the raters of the extent to which the protocol was implemented as intended. Results indicated that overall evaluations of the workshop by participants were positive and the workshop was both feasible and effective. Parents reported an overall 93.67%, and children reported an overall 96% satisfaction rating (out of 100). Participant scores from pretest, 1-month follow-up, and 3-month follow-up on variables measured were evaluated. Child participants demonstrated overall increases in problem-solving skills and maintained these improvements through follow-up. They also demonstrated increases in coping abilities at 1-month follow-up, but returned back to baseline scores by the 3-month follow-up. General Self-Efficacy and Locus of Control were relatively maintained for children between baseline and follow-up time points. Parent participants demonstrated overall increases in adaptive problem-solving skills and decreases in maladaptive problem-solving skills, which were maintained throughout follow-up. Increases in coping abilities and hope, and decreases in worry were also noted in parental participants. The inclusion of parents in the workshop is believed to have helped facilitate children's short-term gains on outcome measures. It is suggested that future workshops provide parents with guidelines on how to reinforce the use of problem-solving skills, and perhaps, may include telephonic coaching 1- and 3-months post-workshop. Results of this study can assist physicians and medical professionals to refer or offer social problem-solving skills to children diagnosed with LQTS. This study demonstrates that continual support and review of problem-solving skills may be necessary to facilitate long-term gains of problem-solving, coping, and adaptive skills in children. Further investigation of utilization of this workshop as a tool to help children and their parents better cope with the daily LQTS related events is needed.