Using Parent Engagement to Improve the Wellbeing of Black Premature Infants With Lung Disease

Launched by JOHNS HOPKINS UNIVERSITY · Jun 20, 2024

Keywords

ClinConnect Summary

This clinical trial is studying how to better engage parents of Black premature infants who have chronic lung disease. The main goal is to see if a simple questionnaire given to parents before their child's medical appointment can help them set and achieve goals for their child's health and wellbeing. By understanding what parents hope to accomplish, the researchers want to find out if this approach can improve outcomes for both the child and the parent.

To take part in the study, parents or legal guardians must have a child who was born early (before 37 weeks) and is diagnosed with chronic lung disease. The child must also be identified as Black, and the parent must speak English. Participants will fill out a questionnaire before their child’s visit and then complete two follow-up surveys—one week and two months later—to share their experiences and progress. This study is not yet recruiting participants, but it aims to make healthcare more helpful for families in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Parent/legal guardian of child born prior to 37 weeks gestational age
• • Parent/legal guardian of child with diagnosis of chronic lung disease or bronchopulmonary dysplasia, as defined by the child's clinical team at the time of hospital discharge
• • Parent/legal guardian of child who identifies that child's race as Black
• • English speaking
• Exclusion Criteria:
• • Parent/legal guardian of child enrolled in palliative care or hospice services at time of hospital discharge
• • Parent/legal guardian of child older than 12 months chronological age