Actively Recruiting
Breaking Silence Through Story: A Narrative Medicine Intervention for Parents of Children With Urogenital Conditions
Led by Sarah Schlegel · Updated on 2026-05-18
20
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
S
Sarah Schlegel
Lead Sponsor
H
Harvard Catalyst Pilot Grant
Collaborating Sponsor
AI-Summary
What this Trial Is About
This research aims to find out whether a guided journaling program can reduce stress and anxiety in parents of children with urogenital conditions, such as differences of sex development and hypospadias. The study seeks to understand if journaling helps lower anxiety levels and gather parents' views on group-based writing support programs for the future. Participants will receive a physical journal containing five writing prompts designed to help them process emotions related to their child's condition. They will complete five journal entries over several weeks, spending 15 to 20 minutes on each writing session at least once per week. This single-arm study includes baseline and follow-up anxiety assessments, plus a 30 to 45-minute interview after finishing the journaling to discuss effects on stress and gather feedback. During the study, parents will complete the General Anxiety Disorder-7 (GAD-7) questionnaire at the start and after the journaling period, about six weeks later. They will also participate in an interview to assess changes in anxiety and coping strategies. Researchers will evaluate changes in anxiety scores and the acceptability of the journaling program. Total participation lasts about six weeks.
CONDITIONS
Brief Title
Breaking Silence Through Story: A Narrative Medicine Intervention for Parents of Children With Urogenital Conditions
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Parent or legal guardian of a child aged 0 to 17 years diagnosed with a urogenital condition such as differences of sex development or hypospadias
- Able to read and understand English
- Willing to complete a guided journaling intervention through writing or dictation over approximately 5 weeks
- Willing to participate in a 45-minute follow-up interview
- Able to provide informed consent
You will not qualify if you...
- Parent or guardian with a severe psychiatric disorder that would interfere with participation as determined by a referring physician
- Unable to complete journaling activities either by writing or dictation
- Unable to provide informed consent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Approximately 5 weeks
Participants complete a guided narrative medicine journaling intervention with structured writing prompts designed to help process emotions related to their child's diagnosis.
Weekly journaling sessions at home, spending 15-20 minutes on each session
Duration - 1 visit
Participants complete a follow-up anxiety assessment and participate in a 30-45 minute qualitative interview to assess changes in anxiety, stress, coping strategies, and provide feedback on the journaling program.
1 follow-up visit (in-person or remote) approximately 6 weeks after intervention initiation
Trial Site Locations
Total: 1 location
1
Boston Children's Hospital
Boston, Massachusetts, United States, 02115
Actively Recruiting
Research Team
A
Alex Wheelock
S
Sarah Schlegel, MD, MS
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
1
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