“You Are Not Alone”: Advice Giving for Parents of Children Living with Complex Chronic Conditions

ABSTRACT

Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different forms of experiential wisdom garnered from their own parental caregiving experiences. Contributing to the naturalistic, health-context investigations of advice messages, we interviewed 35 parents who discussed their experiences with parenting their medically complex child. Part of the broader interview protocol asked parents about advice they would offer to other parents like them. We conducted a thematic analysis of parents’ responses to these questions to understand advice content, form of advice giving messages, challenges experienced by parents, and suggested best practices for managing a child’s CCC. We present our findings and discuss implications on educating health care professionals about how to cultivate advice networks and the need for more parent peer mentoring programs.

KEYWORDS:

• Advice
• social support
• pediatric healthcare
• complex chronic conditions
• parental caregivers
• health communication

Acknowledgments

We would like to thank the parents who shared their stories with us. Also, special thanks to the Ronald McDonald House Eastern Wisconsin and the SHINE Pediatric and Perinatal Program at UnityPoint Hospital-Des Moines for their assistance with recruitment. Finally, special thanks to Nicole Miller for her methodological research assistance.