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

Holly Hoa Vo; Benjamin S Wilfond; Yuanyuan Ding; Carrie M Henderson; Jessica C Raisanen; Gary Ashwal; Alex Thomas; Nicholas A Jabre; Kelly J Shipman; Ann Schrooten; Jennifer Shaffer; Renee D Boss

doi:10.1016/j.pec.2023.107855

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

Patient Educ Couns. 2023 Sep:114:107855. doi: 10.1016/j.pec.2023.107855. Epub 2023 Jun 15.

Authors

Affiliations

¹ Pediatrics, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, Seattle 98101, USA. Electronic address: Holly.Vo@seattlechildrens.org.
² Pediatrics, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, Seattle 98101, USA.
³ Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St., Baltimore, MD 21205, USA.
⁴ Pediatrics, University of Mississippi Medical Center, 2500 N. State Street, Jackson 39216, USA; Center for Bioethics and Medical Humanities, 2500 N. State Street, Jackson 39216, USA.
⁵ Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA.
⁶ Booster Shot Media, 1450 2nd Street, Suite 342, Santa Monica, CA 90401, USA.
⁷ Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA; Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD 21287, USA.
⁸ Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, Seattle 98101, USA.
⁹ The Willow Tree Foundation, Chandler, AZ 85248, USA.
¹⁰ 668 E Argonne Drive, St. Louis, MO 63122, USA.

PMID: 37348312
DOI: 10.1016/j.pec.2023.107855

Abstract

Background: The 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.

Objective: Create a parent-to-parent web-based tool to support decision-making about pediatric home ventilation.

Patient involvement: The tool was created based on interviews and feedback from parents.

Methods: We 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.

Results: We 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.

Discussion: This novel parent-to-parent tool shows promise for expanding access to balanced, family-centered information about pediatric home ventilation.

Practical value: The 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.

Funding: This work was supported by the National Palliative Care Research Center.

Keywords: Decision-making; Home ventilation; Tools.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Child
Humans
Internet
Parents* / psychology
Respiration, Artificial*