Raising Children with Type 1 Diabetes and Celiac Disease: Parental Experiences

• Main Author: Erickson, Kerri Louise
• Format: Others
• Published: BYU ScholarsArchive 2013
• Subjects: mothers; fathers; children; parental experiences; type 1 diabetes; celiac disease; qualitative research; nurse practitioner; Nursing
• Online Access: https://scholarsarchive.byu.edu/etd/3717; https://scholarsarchive.byu.edu/cgi/viewcontent.cgi?article=4716&context=etd

The purpose of this qualitative descriptive study was to examine parental experiences and challenges raising children with both T1DM and CD. Twenty-six families, including 30 parents (25 mothers, 4 fathers, and one custodial grandmother), participated in a 30-60 minute audio-recorded interview designed to explore parental experiences raising children with both T1DM and CD. Participants were asked IRB approved open-ended questions about their experiences raising a child with both diseases. Direct quotations best representing categories/sub-categories were identified through selective coding. Analysis revealed seven main themes: Six themes parents are concerned about, including (a) their child's health complications, b) the challenges of daily disease management, c) the time, resources, and expense required to manage both diseases, d) their child's emotional/mental health, e) support from healthcare providers, f) community support/understanding, and lastly (observed by the researcher) g) how positive versus negative experiences and adaptation influence the way parents and children meet their challenges and perceive the future. Parents raising children with both T1DM and CD face many daily challenges as they learn to manage both lifelong chronic diseases. They need access to and support from healthcare providers for up-to-date education, treatment options, and community resources. Positive provider relationships were identified as: being responsive to parent's questions, willing to listen to parents, creating an open and honest dialogue with parents, having a personal relationship with the child, and being a patient advocate. Future research should examine broader ethnic and socioeconomic populations. A quantitative study design could also be used to assess the level of caregiver burden, in order to compare different ethnic and socioeconomic groups.