Breaking Silence Through Story: guided journaling for parents of children with urogenital conditions
Breaking Silence Through Story: A Narrative Medicine Intervention for Parents of Children With Urogenital Conditions
NA · Boston Children's Hospital · NCT06989593
This program tests whether guided journaling can lower stress and anxiety for parents of children with urogenital conditions such as differences of sex development or hypospadias.
Quick facts
| Phase | NA |
|---|---|
| Study type | Interventional |
| Enrollment | 20 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Boston Children's Hospital (other) |
| Locations | 1 site (Boston, Massachusetts) |
| Trial ID | NCT06989593 on ClinicalTrials.gov |
What this trial studies
Parents of children with urogenital conditions receive a physical journal with five guided prompts and are asked to complete five writing sessions over several weeks, either by writing or dictation. Participants complete the GAD-7 anxiety questionnaire before starting and again after finishing the journaling, and they take part in a 45-minute interview to discuss their experiences. The study collects quantitative change in anxiety scores and qualitative feedback about group-based writing interventions to inform future support programs. Enrollment is limited to English-speaking parents or guardians of children (age 0–17) who receive care at Boston Children's Hospital.
Who should consider this trial
Good fit: Ideal candidates are English-speaking parents or legal guardians of children (0–17 years) with DSD or hypospadias who receive care at Boston Children's Hospital and are willing to complete five journaling sessions and a follow-up interview.
Not a fit: Parents with severe psychiatric disorders that interfere with participation, those unable to complete written or dictated journaling, or non-English speakers are unlikely to benefit from this particular program.
Why it matters
Potential benefit: If successful, this approach could reduce anxiety and improve emotional coping for parents and help shape better support programs at pediatric centers.
How similar studies have performed: Prior expressive writing and narrative medicine studies have shown modest reductions in stress and anxiety in other patient and caregiver groups, but applying these methods specifically to parents of children with DSD or hypospadias is largely novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Parent or legal guardian of a child (age 0-17 years) diagnosed with a urogenital condition (differences of sex development and/or hypospadias) * Able to read and understand English * Child receives care at Boston Children's Hospital * Willing to complete a guided journaling intervention (through writing or dictation) over a period of approximately 5 weeks * Willing to participate in a 45 minute follow-up interview * Able to provide informed consent Exclusion Criteria: * Parent/guardian with severe psychiatric disorder that would interfere with participation as determined by referring physician * Parent/guardian unable to complete either written journaling activities or dictation * Inability to provide informed consent
Where this trial is running
Boston, Massachusetts
- Boston Children's Hospital — Boston, Massachusetts, United States (RECRUITING)
Study contacts
- Study coordinator: Sarah Schlegel, MD, MS
- Email: Journaling@childrens.harvard.edu
- Phone: 617-355-3523
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: DSD, Hypospadias, Disorders of Sex Development, Anxiety, Stress, Psychological, Parents, Psychological Adaptation, Writing