Not Yet RecruitingNot Applicable

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

30 participantsStarted 2026-07-01

Plain-language 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).

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

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

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Feasibility as measured by number of interventions completed

Timeframe: Day 0

Feasibility as measured by the time it takes participant to complete intervention

Timeframe: Day 0

Feasibility as measured by the number of goals submitted by each participant

Timeframe: Day 0

Acceptability of the intervention as assessed by the Acceptability of Intervention Measure (AIM) scale

Timeframe: Day 7 post-intervention

Trial details

NCT IDNCT06474767

SponsorJohns Hopkins University

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2027-06-30

Contact for this trial

Brandon M Smith, MD MPH

443-997-5437 brandon.smith@jhmi.edu

View on ClinicalTrials.gov More Chronic Lung Disease trials

Plain-language summary

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

Feasibility as measured by number of interventions completed

Timeframe: Day 0

Feasibility as measured by the time it takes participant to complete intervention

Timeframe: Day 0

Feasibility as measured by the number of goals submitted by each participant

Timeframe: Day 0

Acceptability of the intervention as assessed by the Acceptability of Intervention Measure (AIM) scale

Timeframe: Day 7 post-intervention