Describing intrafamily conflict around the decision for or against pediatric tracheostomy and long-term ventilation

John Morrison – Johns Hopkins All Children's Hospital; Renee Boss – Johns Hopkins University School of Medicine; Benjamin Wilfond – Seattle Children's Hospital; Carrie Henderson – Louisiana State University School of Medicine; Nicholas Jabre – Johns Hopkins All Children's Hospital

Abstract: In this qualitative, hypothesis-generating study, we sought to characterize the types of conflict that parents may encounter with other family members during the tracheostomy and long-term ventilation (LTV) decision-making process, including sources of intrafamily conflict and the approach to conflict resolution. Existing studies have described the caregiver experience of conflict during decision-making about pediatric LTV, yet less is known about how conflict among family members impacts this decision. Assessing how families navigate intrafamily decisional conflict could lead to a more complete understanding of the tracheostomy decision-making process.

We conducted a secondary analysis of 38 semi-structured interviews that were obtained as part of a multi-center study to evaluate the parental experience of decision-making around tracheostomy/LTV. We reviewed key content from the transcripts related to family conflict or disagreements. Using qualitative analysis, we generated themes and identified key results.

We identified two primary sources of intrafamily conflict: (1) quality versus quantity of life, and (2) the impact of tracheostomy/LTV on family and siblings. 24% of families experienced conflict regarding either the perceived benefit of further intervention or the quality of the remainder of their child’s life. Families’ approach to conflict resolution was characterized by either competition or collaboration between family members. Competitive resolution involved indifference toward or dominance over others’ opinions, whereas collaborative resolution demonstrated parental compromise to make a unified decision.

The results of this study may help clinicians better provide family-centered care by improving identification and navigation of intrafamily conflict during these complex medical decisions.

Keywords: Conflict, Decision-making, Tracheostomy