Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Abstract

Introduction/AimsObesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD.MethodsWe surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD.ResultsFifty‐three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self‐consciousness (71%), a negative impact on self‐esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six‐week weight management program addressing appetite management and screen time.DiscussionManaging weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.

Pilot study of a virtual weight management program for Duchenne muscular dystrophy

“…[15][16][17] Surveys were used to gather initial information about content, length, and style of delivery and program outcomes preferred by families (n = 27). 10 Face-to-face interviews with a range of health professionals were used to gather opinions on program duration, delivery mode, and outcome measures. After this initial 'ideation' phase, a draft program of content, style, and delivery mode was developed as a prototype model.…”

“…9 Parents and other carers ("caregivers") also report that fussy eating, sensory preferences, and time constraints are barriers to healthy eating and weight management. 10 Weight management is a priority for young people with DMD and their families, yet there is a lack of tailored nutrition and weight management information provided in healthcare settings. 10 Health professionals working with individuals with neuromuscular conditions may also lack the confidence to address weight management.…”

“…10 Weight management is a priority for young people with DMD and their families, yet there is a lack of tailored nutrition and weight management information provided in healthcare settings. 10 Health professionals working with individuals with neuromuscular conditions may also lack the confidence to address weight management. 11 Weight management strategies tailored to DMD are needed to overcome these barriers and improve health professional confidence.…”

“…The program design was informed by a survey of caregivers that identified preferences for a holistic, short, intensive program. 10 Secondary outcome measures were changes in weight, waist circumference, physical function, quality of life, self-reported fatigue levels, dietary intake, and adverse events.…”