Możliwość stosowania programu Mindfulness Matter© u dzieci z epilepsją i ich rodziców: pilotażowe badanie z randomizacją
Feasibility of using Making Mindfulness Matter© for children with epilepsy and their parents: A pilot randomized controlled trial
W skrócie
Badanie sprawdzało, czy ośmiotygodniowy program mindfulness (uważności) przeprowadzany online dla dzieci z epilepsją i ich rodziców jest możliwy do wdrożenia i pomocny. Program nauczał technik relaksacji i radzenia sobie ze stresem. Wyniki pokazały, że program był dobrze odbierany przez rodziny, osiągał wysoką jakość i mógłby być uzupełnieniem do standardowego leczenia epilepsji w poradniach medycznych.
Oryginalny abstract (angielski)
OBJECTIVE: Children with epilepsy (CWE) often experience poor health-related quality of life (HRQOL), and family environment plays a central role in how CWE cope with challenges. Our aim was to evaluate the feasibility of delivering a family-based mindfulness program (Making Mindfulness Matter©, M3©) synchronously online for CWE and their parents, to support families facing HRQOL-related challenges. METHODS: This was a parallel, 1:1 randomized controlled trial comparing M3© to waitlist control, recruiting families of CWE aged 4-10 years in Ontario, Canada. M3© is an eight-week concurrent parent-child program teaching mindfulness skills for managing stress and building family resiliency, delivered live-online by epilepsy agency staff. Feasibility data were collected through self-administered questionnaires from parents, program facilitators, and research staff. A mixed-methods process evaluation (descriptive statistics, qualitative content analysis) examined participation rate, session attendance, attrition, missing data, quality of session delivery by facilitators, proportion of curriculum units delivered, and participant adherence and satisfaction. RESULTS: Of 298 dyads screened, 72 were randomized (intervention = 35, control = 37; 31 % participation). Time commitment was a key barrier to recruitment and retention. Fifteen M3© groups were completed, and 61 dyads participated. Session fidelity was high (80-100 % curriculum delivered), and most families attended > 75 % of sessions. Families were engaged, practiced skills weekly, and were satisfied with the program. CONCLUSION: M3© was delivered as intended and well-received by participating families, providing preliminary evidence supporting its feasibility as a community-based on-line treatment complementary to clinical care. Findings support further evaluation of M3© in multi-centre trials and highlight time commitment as an important consideration for future recruitment and retention strategies.