Using Parent Engagement to Improve the Wellbeing of Black Premature Infants With Chronic Lung Disease
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: P-CGS (Pediatric Collaborative Goal Setting).
- Who it may be relevant to
- Registry conditions: Chronic Lung Disease. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Center list to be confirmed — check the primary protocol.
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Addressing Health Disparities in Chronic Lung Disease for Preterm Infants Through Parent Engagement
Overview
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).
Interventions
- Behavioral 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
Primary outcome measures
- Feasibility as measured by number of interventions completed [Time frame: Day 0]
- Feasibility as measured by the time it takes participant to complete intervention [Time frame: Day 0]
- Feasibility as measured by the number of goals submitted by each participant [Time frame: Day 0]
- Acceptability of the intervention as assessed by the Acceptability of Intervention Measure (AIM) scale [Time frame: Day 7 post-intervention]
Secondary outcome measures (4)
- Goal attainment as assessed by number of goals submitted [Time frame: Day 60 post-intervention]
- Participation activation as measured by Parent Patient Activation Measure 10 [Time frame: Day 60 post-intervention]
- Participant's child's respiratory symptoms as measured by self-report [Time frame: Day 60 post-intervention]
- Participant's child's use of the emergency department for breathing symptoms as measured by self-report [Time frame: Day 60 post-intervention]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Allocation
- N/A
- Model
- Single group
- Masking
- Open label
- Primary purpose
- Health services research
Study locations
Center list to be confirmed — check the primary protocol.
Identifiers
NCT: NCT06474767 · IRB00447949