Breaking Silence Through Story: A Narrative Medicine Intervention for Parents of Children With Urogenital Conditions

Sarah Schlegel

Status: Begins enrollment this month

Conditions: Hypospadias; DSD

Treatments: Behavioral: Narrative Medicine Journaling Intervention

Study type: Interventional

Funder types: Other

Identifiers

NCT06989593

IRB-P00051291

89676 (Other Grant/Funding Number)

Details and patient eligibility

About

The goal of this clinical trial is to learn whether a journaling intervention can reduce stress and anxiety in parents of children with urogenital conditions (such as differences of sex development and hypospadias).

The main questions it aims to answer are:

• Does guided journaling help to reduce anxiety levels in parents of children with urogenital conditions?
• What are parents' perspectives on group-based writing interventions for future support programs?

Participants will:

• Complete a short anxiety questionnaire (the General Anxiety Disorder-7 scale) at the beginning of the study
• Receive a physical journal with 5 writing prompts designed to help process emotions related to their child's condition
• Complete 5 journal entries over several weeks, writing about their experiences and feelings
• Complete the same anxiety questionnaire again after finishing the journal entries
• Participate in a 45-minute interview to discuss how the journaling affected their stress levels and gather feedback on potential group-based writing programs

Enrollment: 20 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Supportive Care

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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20 participants in 1 patient group

Narrative Medicine Journaling Intervention

Experimental group

Description:

All participants in this single-arm pilot study will complete baseline GAD-7 anxiety assessments, participate in a guided journaling program, complete follow-up GAD-7 assessments, and take part in a qualitative interview. Parents of children with urogenital conditions (differences of sex development and hypospadias) will receive the narrative medicine intervention over a period of several weeks, with pre- and post-intervention anxiety measurements and interview assessments.

Treatment:

Behavioral: Narrative Medicine Journaling Intervention