Even Resourceful Parents Lack Access to Ethics-Informed Resources

Ethics resources have the potential to help parents of children with medical complexity understand and navigate ethics concerns relevant to their child’s care. This study conducted 28 semi-structured individual interviews with parents of children with chronic critical illness to learn about current ethics resources use patterns. Parents universally attested to encountering ethics concerns relevant to their child’s care. These parents described ethics resources as helpful for navigating ethics challenges, including obtaining information, clarifying goals, advocating for access, and improving relationships. Parents described relying on lay (relational and experiential) resources not informed by ethics-specific guidance when facing ethics challenges. The majority of parents (93%) do not recall the treatment team using, referencing, or sharing ethics-relevant resources. Parents described wanting ethics resources and recognized the current lack of accessible ethics-specific resources.