Parent Perspectives on I-ACQUIRE Therapy.

Abstract

Background: Although Constraint-Induced Movement Therapy is increasingly recommended as an evidence-based, intensive treatment for children with hemiparesis, parent perspectives are lacking. I-ACQUIRE, a multicomponent form of Constraint-Induced Movement Therapy, involves substantial parent participation. Child outcomes from the United States 15-site I-ACQUIRE phase 3 clinical trial (2019-2025), partnered with a Parent Council, are presented elsewhere. Here, we examine complementary lived-experience parent data.

Methods: All parents (167) of infants/toddlers with perinatal arterial ischemic stroke and hemiparesis consented to child random assignment to usual treatment (UT), moderate-dose I-ACQUIRE (3 h/d, 5 d/wk over 4 weeks), or high-dose I-ACQUIRE (6 h/d). Parents completed assessments about life- and therapy-related stress, treatment concerns, observations of child progress, and perceived therapy-related responsibilities.

Results: Parents of children in the I-ACQUIRE moderate-dose (56) and high-dose group (58), compared with UT (53), reported lower rates of concerns or problems that therapy did not produce clear benefits (≤4% versus 18%), child-therapist interactions (≤2% versus 24%), and parent-therapist interactions (≤2% versus 6%). I-ACQUIRE versus UT parents had higher proportions of positive feelings that therapy was useful (94%-98% versus 83%); interesting (96%-98% versus 79%), important (94%-98% versus 85%), and fun (78%-84% versus 53%); and provided comforting (72%-83% versus 47%) and relaxing benefits (28%-31% versus 17%). In all groups, similar proportions reported their role was stressful (I-ACQUIRE 26%-28%, UT 32%), difficult (I-ACQUIRE 35%-48%, UT 38%), and tiring (I-ACQUIRE 48%-52%, UT 43%). General life stress scores were mostly in the moderate-range category, similar across groups.

Conclusions: Parents of I-ACQUIRE children reported higher positive feelings and notably fewer concerns about lack of benefits compared with UT. Across all groups, some parents (<52%) reported treatment-related stress, difficulty, and fatigue. These findings provide new perspectives from parents' lived experiences to help families and clinicians in treatment decision-making.

Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT03910075.