Addressing Health Disparities in Chronic Lung Disease for Preterm Infants Through Parent Engagement
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Chronic Lung Disease
- Sponsor
- Johns Hopkins University
- Enrollment
- 50
- Primary Endpoint
- Feasibility as measured by number of interventions completed
- Status
- Not yet recruiting
- Last Updated
- 7 months ago
Overview
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).
Investigators
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
Outcomes
Primary Outcomes
Feasibility as measured by number of interventions completed
Time Frame: Day 0
Number of participants who complete the pediatric collaborative goal setting intervention out of the number of consented participants who are sent a link prior to the child's well visit
Acceptability of the intervention as assessed by the Acceptability of Intervention Measure (AIM) scale
Time Frame: Day 7 post-intervention
Measured by the Acceptability of Intervention Measure (AIM) scale - a 4 item survey with 5 point Likert scales from Completely Disagree to Completely Agree. Score ranges from 4 to 20, where higher scores indicate greater acceptability.
Feasibility as measured by the number of goals submitted by each participant
Time Frame: Day 0
Number of goals submitted by each participant through the pediatric collaborative goal setting intervention
Feasibility as measured by the time it takes participant to complete intervention
Time Frame: Day 0
Amount of time (minutes) that participant has the pediatric collaborative goal setting intervention open
Secondary Outcomes
- Goal attainment as assessed by number of goals submitted(Day 60 post-intervention)
- Participant's child's respiratory symptoms as measured by self-report(Day 60 post-intervention)
- Participant's child's use of the emergency department for breathing symptoms as measured by self-report(Day 60 post-intervention)
- Participation activation as measured by Parent Patient Activation Measure 10(Day 60 post-intervention)