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

N/ANot Yet RecruitingNCT06474767

Johns Hopkins University30 enrolled

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).

Study Type

INTERVENTIONAL

Allocation

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Enrollment

Conditions

Chronic Lung Disease

Interventions

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

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

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

Time frame: Day 0

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

Amount of time (minutes) that participant has the pediatric collaborative goal setting intervention open

Time frame: Day 0

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

Number of goals submitted by each participant through the pediatric collaborative goal setting intervention

Time frame: Day 0

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

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.

Time frame: Day 7 post-intervention

Secondary Outcomes

Goal attainment as assessed by number of goals submitted

Number of goals submitted as part of pediatric collaborative goal setting that were accomplished by participant since intervention

Time frame: Day 60 post-intervention

Participation activation as measured by Parent Patient Activation Measure 10

Measured by the Parent Patient Activation Measure scale - a 7 item survey with 4 point Likert scales (total score range 7-28) from Disagree Strongly to Agree Strongly with higher scores indicating a better outcome.

Time frame: Day 60 post-intervention

Participant's child's respiratory symptoms as measured by self-report

Frequency of rescue inhaler use and symptoms of wheezing, rated on 5 point Likert scale (total score range 1-5) from Never to Every day with higher scores indicating more use and worse outcome. This is a survey instrument constructed by the study team.

Time frame: Day 60 post-intervention

Participant's child's use of the emergency department for breathing symptoms as measured by self-report

Frequency of emergency department visits, rated on 5 point Likert scale (total score range 1-5) from Never to Every day with higher scores indicating more use and worse outcome. This is a survey instrument constructed by the study team.

Time frame: Day 60 post-intervention

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

Overview

Conditions

Interventions

Eligibility

Outcomes

Primary Outcomes

Secondary Outcomes

Central Contacts