The Impact of Caregiver Burden on Families with Children Diagnosed with Duchenne Muscular Dystrophy

Topic:

Other

Poster Number: P101

Author(s):

Abigail Peterson, BS, University of Florida, Carmen Astudillo Leon, MD, University of Florida, David Fedele, PhD, Nemours Children's Health, Stephanie Salabarria, BS, University of Florida, Julie Berthy, DNP, University of Florida, Barry Byrne, MD, PhD, University of Florida

Background:
Duchenne muscular dystrophy (DMD) is the most common hereditary form of neuromuscular disease and is progressive, degenerative & X-linked. By late teens, individuals need significant assistance to complete tasks of daily living. This creates unique challenges for caregivers that differ from a normative role. These challenges result in and increased burden and negative emotions for caregivers. Historically, caregiver burden has been examined however, potential protective and influential factors remain unknown. This study examines the impact of caregiver burden and acceptance in families with children diagnosed with DMD.

Methods:
Caregivers (n=35) completed a set of questionnaires about illness burden, levels of support, and acceptance. Additionally, participants completed a five-minute speech sample about their child. Caregivers (80% White; Mage=43.97) were primarily recruited through UF Health Medical Plaza, neuromuscular clinic. Caregiver burden was measured with the Zarit Caregiver Burden Interview, levels of support were measured with PROMIS v2 measures, and caregiver acceptance was measured with the COMPAct measurement. The five-minute speech sample was coded for parental warmth and negativity. Regression models with acceptance and child age were used to analyze the relationship with caregiver burden.

Results:
When child age (M=12.77; SD=4.47) and caregiver acceptance (M=39.08; SD=17.57) were used as independent predictors the model was significant F(1, 33) = 30.84, p < .001), suggesting that both factors independently contribute to predicting Caregiver Burden. This model predicted 47% of the variance. When an interaction term between acceptance and child age was added, the overall model is significant (F(1, 31) = 11.99, p > 0.001) but the individual predictors are not. This suggests that no single variable independently contributes to caregiver burden in this model.

Conclusions:
Results indicate caregiver acceptance may not be a sufficient construct to target for interventions to improve caregiver burden. More research needs to be done to identify avenues and constructs to target for reduction in caregiver burden.