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

Sarah Schlegel20 enrolled

Overview

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

Study Type

INTERVENTIONAL

Allocation

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

Conditions

DSD Hypospadias

Interventions

Narrative Medicine Journaling InterventionBEHAVIORAL

Participants will complete the GAD-7 anxiety assessment at baseline. They will then receive a physical journal containing 5 structured, therapeutic writing prompts designed to help process emotions related to their child's diagnosis. Prompts focus on processing experiences with diagnosis, addressing uncertainty, coping with stigma, and developing resilience. Parents will be instructed to complete the 5 journal entries, spending 15-20 minutes on each writing session at least once per week. Following completion of the journaling intervention, participants will complete a follow-up GAD-7 assessment and take part in a 30-45 minute qualitative interview to further assess perceived changes in anxiety, stress, and coping strategies, and to gather feedback on potential group-based writing programs.

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

Change in GAD-7 Anxiety Scores

Change from baseline in General Anxiety Disorder-7 (GAD-7) scores. The GAD-7 is a validated 7-item self-report questionnaire used to assess anxiety symptom severity. Scores range from 0-21, with higher scores indicating greater anxiety symptoms.

Time frame: Change from baseline (pre-intervention) to approximately 6 weeks post-intervention initiation

Secondary Outcomes

Qualitative Assessment of Anxiety Related to Child's Diagnosis

Semi-structured interviews to assess participants' self-reported changes in anxiety specifically related to their child's urogenital condition following the narrative medicine intervention, including perceived changes in stress, worry frequency, and emotional distress related to the diagnosis.

Time frame: Measured at one follow-up interview, approximately 6 weeks after intervention initiation

Changes in Parental Coping Strategies

Qualitative assessment through semi-structured interviews of participants' self-reported changes in coping mechanisms, including reduction in feelings of self-blame, increased sense of control, and development of new strategies for managing uncertainty following the journaling intervention.

Time frame: Measured at one follow-up interview, approximately 6 weeks after intervention initiation

Interest in Group-Based Writing Interventions

Assessment of parents' interest in and preferences for potential group-based writing interventions, including identification of perceived benefits, potential barriers to participation, and suggestions for implementation approaches. Measured at one follow-up interview, approximately 6 weeks after intervention initiation

Time frame: Approximately 6 weeks after intervention initiation

Feasibility and Acceptability of Journaling Intervention

Assessment of participation rates, completion of journal entries, and participant feedback on the structure, content, and delivery of the journaling intervention to inform future program development. Measured at one follow-up interview, approximately 6 weeks after intervention initiation