Moving family-centered care forward: Bereaved fathers' perspectives

This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.