40
Participants
Start Date
July 8, 2024
Primary Completion Date
July 7, 2027
Study Completion Date
July 7, 2027
Tube weaning therapy intervention
Participants in the intervention group will be invited to weekly virtual group therapy mealtime sessions with the Speech-Language Pathologist and other participants in the intervention group. Additionally, families will engage in individual virtual therapy sessions at least biweekly focused on individualized goals informed by the expertise of the study team and published expert programs. Therapies intervention group participants are already receiving or who begin to receive during the study period will not be stopped during this intervention. The Speech Therapist and Occupational Therapist will be utilized as needed for the child's individualized care plan. They will consult with the registered dietitian and Developmental and Behavioral Pediatrician as needed.
Feeding Group
All participants in the control group will be invited to a weekly virtual group therapy mealtime session with other enrolled control group participants and a speech therapist who is not involved with the intervention. During this informal session, families will have the opportunity to meet other children with feeding tubes and their parents. The investigators will assess level of engagement (frequency of participation) and parental experience at interval assessments. Therapies research participants are already receiving or who begin to receive during the study period (early intervention community therapies, center-based therapies) will not be stopped during this intervention. Data will be collected on the frequency of these standard of care therapies. The assessments used for the control group will be the same assessments as the intervention group and will include the Speech Therapy Assessment; Occupational Therapy Assessment; and Pediatric Eating Assessment Toll.
RECRUITING
University of Chicago, Chicago
The Gerber Foundation
OTHER
University of Chicago
OTHER