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

NCT ID: NCT06474767

Last Updated: 2025-09-16

Basic Information

• Recruitment Status: NOT_YET_RECRUITING
• Clinical Phase: NA
• Total Enrollment: 30 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2026-07-01
• Study Completion Date: 2027-06-30

Brief Summary

The goal of this pilot study is to test the feasibility and acceptability of a collaborative goal setting intervention to improve parent engagement of Black preterm infants with chronic lung disease in primary care. Preliminary impact on child and parent outcomes will also be explored.

The main questions it aims to answer are: 1) Will parents complete a pre-visit questionnaire that asks about goals for the child? 2) Does use of the pre-visit questionnaire help parents to achieve self-identified goals?

Participants will fill out a pre-visit questionnaire prior to the child's well visit. The participants will then complete two surveys after the visit (1 week and 2 months after).

Conditions

Chronic Lung Disease

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: HEALTH_SERVICES_RESEARCH
• Blinding Strategy: NONE

Study Groups

Pediatric Collaborative Goal Setting Participant

Participants will receive pediatric collaborative goal setting (P-CGS) intervention one to three days prior to the child's identified well visit and will be asked to complete it before or at the time of the visit. Participants will identify 1 goal for the child's health and the parent's own health, covering both medical and social domains. Participants will then be prompted to share the content with the child's provider when asked about the parent's priorities during the child's visit. One week and two months after the child's well visit where pediatric collaborative goal setting was used, participants will complete follow up surveys.

Group Type: EXPERIMENTAL

P-CGS (Pediatric Collaborative Goal Setting)

Intervention Type: BEHAVIORAL

Electronic questionnaire sent to participants ahead of a pediatric primary care well child visit, assessing goals for themselves and the child's health with prompt to share with providers during visit

Interventions

P-CGS (Pediatric Collaborative Goal Setting)

Electronic questionnaire sent to participants ahead of a pediatric primary care well child visit, assessing goals for themselves and the child's health with prompt to share with providers during visit

Intervention Type: BEHAVIORAL

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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Johns Hopkins University

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Brandon M Smith, MD MPH

Role: PRINCIPAL_INVESTIGATOR

Johns Hopkins School of Medicine

Central Contacts

Brandon M Smith, MD MPH

Role: CONTACT

brandon.smith@jhmi.edu

443-997-5437

Other Identifiers

IRB00447949

Identifier Type: -

Identifier Source: org_study_id