Development and acceptability testing of a tracheostomy decision support video for parents

Abstract

Objective

To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.

Patient involvement

To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.

Methods

After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.

Results

Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.

Discussion/practical value

Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.