Publication Update: A parent's perspective on the influence of a developmental disability on their child's weight-related behaviors

Many of our DS-Connect registrants participated in Dr. Polfuss's study looking into a parent's perspective on the influence of Down syndrome on the child's weight. The survey led to a publication and here is the summary of the findings:

Children with developmental disabilities have a higher prevalence of being overweight.  Excess body weight creates additional challenges for the child and family members in day-to-day life.  This study allowed the researchers to interview 15 parents of children 5-16 years of age diagnosed with either Down syndrome or spina bifida.  The interview questions asked them to share how their child’s diagnosis, healthcare provider’s weight-management guidance and the parents own ability to self-care and role model influenced the child’s weight-related behaviors of nutrition and activity (physical and sedentary).  Through the interviews, social and medical challenges secondary to the child’s diagnosis influenced the child’s nutrition and activity habits and opportunities and secondarily their weight. Families recognized the need to role model healthy behaviors and to engage in positive self-care to optimize their own health which indirectly influences the child.  The parents were not always able to do this due to lack of time and increased responsibilities related to the child’s diagnosis. While challenges were shared, strength and determination of the families was apparent.  The need for healthcare providers to be aware of the challenges and unique needs of the child and families will allow them to provide better support.  Concurrently, promoting and supporting self-care and examining and validating the emotional and logistical aspects of parenting a child with a disability may positively influence the child’s weight-related behaviors.

The findings were published in the Journal of Pediatric Nursing 47 (2019), 121-130.

Thank you for your participation.