Digital Peer-Support for Family Caregivers of Individuals with Neuromuscular Disease: A Randomized Controlled Trial (Preprint)

BACKGROUND Neuromuscular diseases (NMD) affect nerves and muscles resulting in weakness and often profound disability. Family caregivers of individuals with NMD experience significant burden and negative health effects. Peer support may help to ameliorate these negative impacts. OBJECTIVE To evaluate the effect of a digital peer-support intervention compared to usual care on caregiver mastery, competence, stress, burden, anxiety, and depression among family caregivers of individuals with NMD. METHODS We conducted a parallel group randomized controlled superiority trial. We recruited family caregivers of individuals (children and adults) with NMD. The 12-week intervention comprised access to a trained peer mentor via aTouchAway (Aetonix, Canada) and weekly digital discussion forums. Primary outcome was caregiver mastery (Pearlin Mastery Scale (PMS)) adjusted for baseline score. Secondary outcomes included caregiver stress, competence, burden, anxiety, and depression. We calculated adjusted (for baseline score) mean differences (aMDs) using analysis of covariance and generated multivariable linear regression models exploring associations with the intervention and caregiver age, years of caregiving, care recipient medical diagnosis, care recipient ventilation type, adjusting for baseline outcome scores. RESULTS We recruited 100 participants, mean (SD) age 46.8 (11.6) years, 70% mothers, with mean (SD) length of caregiving 11.8 (7.6) years. We found no difference in 12-week PMS scores (aMD 0.67; 95% CI -1.7 to 3.1). We also found no difference in any of our secondary outcomes. Mentors and participants sent a mean (SD) of 21.3 (33.3) and 17.7 (33.0) messages, respectively. Overall, 62% of participants and 92% of mentors engaged in at least one program element for ≥ 8 of the 12 weeks. CONCLUSIONS Our 12-week digital peer support program had no effect on caregiver mastery or other caregiving or psychological outcomes. This might be due to only moderate fidelity. Future research should focus on peer support interventions that are better tailored to improve intervention fidelity and ultimately caregiver well-being. CLINICALTRIAL ClinicalTrials.gov NCT05070624; https://clinicaltrials.gov/study/NCT05070624