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

Johns Hopkins University

Status: Begins enrollment in 4 months

Conditions: Chronic Lung Disease

Treatments: Behavioral: P-CGS (Pediatric Collaborative Goal Setting)

Study type: Interventional

Funder types: Other

Identifiers

NCT06474767

IRB00447949

Details and patient eligibility

About

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).

Enrollment: 30 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Health Services Research

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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30 participants in 1 patient group

Pediatric Collaborative Goal Setting Participant

Experimental group

Description:

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.

Treatment:

Behavioral: P-CGS (Pediatric Collaborative Goal Setting)