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

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.

Team clinic: Expansion of a multidisciplinary care model for adolescents with type 1 diabetes.

BACKGROUND: Adolescent and young adults (AYA) with Type 1 Diabetes (T1D) experience more difficulty with glycemic control than patients in all other age groups. The shared medical appointment (SMA) model has been effective in multiple healthcare populations, but the feasibility and effectiveness of SMA in AYA patients with T1D is unclear. METHODS: This research leverages the team's multidisciplinary expertise to develop an engaging intervention toolkit and test the implementation of the Team Clinic care model for the treatment of T1D among middle school adolescents in a large urban children's hospital serving an economically, racially and ethnically diverse population. In Phase 1, the team will manualize the Team Clinic care model into an engaging, age-appropriate educational and intervention toolkit. In Phase 2, the team will conduct a randomized clinical trial to test the feasibility and usability of the toolkit from the provider perspective (team member satisfaction; clinical efficiency; compliance with American Diabetes Association, American Association of Diabetes Educators, and California Children's Services standards; and payor-level cost data) and the preliminary efficacy of the intervention toolkit on patient- and family-level outcomes (attendance, acceptability/satisfaction with care, patient-level cost data, diabetes outcomes, diabetes family conflict, diabetes distress, and depression). DISCUSSION: AYA patients with T1D often receive care in clinics and institutions with limited resources and time. This research tests the feasibility and efficacy of an innovative and potentially cost-effective SMA model to address the unique needs of underserved populations, while meeting national and state clinical standards. Trial registration The study is registered with ClinicalTrials.gov (Protocol Record: NCT04190368).

Are Comic Books Appropriate Health Education Formats to Offer Adult Patients?

Physicians who recommend patient education comics should consider that some patients might question the appropriateness of this format, especially in the US, where a dominant cultural view of comics is that they are juvenile and intended to be funny. In this case, Dr. S might have approached communication with Mrs. T differently, even without knowing her attitude toward comics as a format for delivering health information. Dr. S could acknowledge that though some people might not expect useful medical information in a comic format, it has unique aspects and new research on patient education comics shows that even adults are finding this medium to be effective, educational, and engaging. Offering comics to patients, however, does potentially require patient educators to invest additional time to review and assess their accuracy and relevance.

The Feasibility of Utilizing a Comic for Education in the Emergency Department Setting.

The objective of this study was to determine the feasibility of a comic education module in the Emergency Department setting. A convenience sample of 50 injured children and their caregivers were enrolled. The comic was found to be likeable, easy to read, and provided important information to both children and their caregivers. Total time to read the comic was three minutes (SD 1.4, range 1.4-7.1). Most children (60%) read the comic independently, including all children over age 14 years. At 72-hour phone follow-up, 86% of caregivers had accurate recall of all three comic teaching points. This innovative comic educational module is feasible for use for children ages 4-18 years in the Emergency Department. Though this comic was intended to educate children, caregivers recalled all three teaching points 72 hours after discharge.