Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation

Abstract

BackgroundThe decision to initiate pediatric mechanical ventilation via tracheostomy (“home ventilation”) is complex and parents often desire information from other parents who have faced this decision. However, parent-to-parent communication is challenging as it is difficult to connect new families to experienced families in ways that optimize informed, balanced decision-making. ObjectiveCreate a parent-to-parent web-based tool to support decision-making about pediatric home ventilation. Patient involvementThe tool was created based on interviews and feedback from parents. MethodsWe interviewed parents who previously chose for, or against, home ventilation for their child. Interview themes and family comments guided website development. Viewer feedback was solicited via an embedded survey in the tool. ResultsWe created 6 composite character families to communicate 6 themes about home ventilation: 1) Considering treatment options, 2) Talking with medical team, 3) Impact on life at home, 4) Impact on relationships, 5) Experience for the child, and 6) If the child’s life is short. Nine families who reviewed the draft tool felt it would have helped with their decision about home ventilation. Specifically, it supported families in thinking through what was “most important about their child’s breathing problems” (7 of 9 parents) and feeling “more at peace with the decision” (8 of 9 parents). Between 6/1/20–12/31/22, nearly 5500 viewers have accessed the tool and 56 viewers completed the survey (including 13 families and 39 clinicians). Feedback from experienced families and clinicians reported the tool taught them something new. DiscussionThis novel parent-to-parent tool shows promise for expanding access to balanced, family-centered information about pediatric home ventilation. Practical valueThe diverse stories and decisions let parents access multiple family perspectives. The tool’s focus is on family-centric information that parents reported was usually missing from clinician counseling. FundingThis work was supported by the National Palliative Care Research Center.