Nutrition Commons^™

Emotional Experience In Parents Of Children With Zellweger Spectrum Disorders: A Qualitative Study, Mousumi Bose, Meena Mahadevan, Dana R. Schules, Rory K. Coleman, Kelly M. Gawron, Melissa B. Gamble, Jean Baptiste Roullet, K. Michael Gibson, William B. Rizzo

Department of Nutrition and Food Studies Scholarship and Creative Works

Zellweger spectrum disorders (ZSDs) are rare, debilitating genetic diseases of peroxisome biogenesis that require constant management and lifelong care. Nevertheless, the experience of family caregivers for children diagnosed with ZSD is not well understood. In this study, we sought to characterize the emotional experience of ZSD family caregivers. Three 90-min focus groups were conducted with thirty-seven parents (25 mothers and 12 fathers) of children with ZSD during a family advocacy conference. Focus groups were arranged by age of proband (Group 1: 0–4 years, Group 2: 5–10 years, Group 3: >11 years). Audio recordings of focus groups were transcribed and analyzed …