The parent perspective: "being a good parent" when making critical decisions in the PICU

Abstract

Objective: To identify factors important to parents making decisions for their critically ill child.

Design: Prospective cross-sectional study.

Setting: Single center, tertiary care PICU.

Subjects: Parents making critical treatment decisions for their child.

Intervention: One-on-one interviews that used the Good Parent Tool-2 open-ended question that asks parents to describe factors important for parenting their ill child and how clinicians could help them achieve their definition of "being a good parent" to their child. Parent responses were analyzed thematically. Parents also ranked themes in order of importance to them using the Good Parent Ranking Exercise.

Measurement and main results: Of 53 eligible parents, 43 (81%) participated. We identified nine themes through content analysis of the parent's narrative statements from the Good Parent Tool. Most commonly (60% of quotes) components of being a good parent described by parents included focusing on their child's quality of life, advocating for their child with the medical team, and putting their child's needs above their own. Themes key to parental decision making were similar regardless of parent race and socioeconomic status or child's clinical status. We identified nine clinician strategies identified by parents as helping them fulfill their parenting role, most commonly, parents wanted to be kept informed (32% of quotes). Using the Good Parent Ranking Exercise, fathers ranked making informed medical decisions as most important, whereas mothers ranked focusing on the child's health and putting their child's needs above their own as most important. However, mothers who were not part of a couple ranked making informed medical decisions as most important.

Conclusion: These findings suggest a range of themes important for parents to "be a good parent" to their child while making critical decisions. Further studies need to explore whether clinician's knowledge of the parent's most valued factor can improve family-centered care.

Figure 1

Ranking of potential priorities most important to parents during decision making. The scores for each of the potential priorities are relative to each other, such that a priority with a score of 10 is twice as likely to be chosen as being important (and not chosen as being least important) as is a priority with a score of 5.