Narrative Medicine for Parents of Children With Urogenital Conditions

Overseen By Sarah Schlegel, MD, MS

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Sarah Schlegel

Disqualifiers: Severe psychiatric disorder, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 2

20 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial explores whether guided journaling, known as the Narrative Medicine Journaling Intervention, can reduce stress and anxiety in parents of children with urogenital conditions, such as differences in sex development or hypospadias. The researchers aim to determine if writing about emotions helps parents feel less anxious and gather insights on group writing programs for future support. Participants will write in a journal using prompts and share their experiences in a follow-up interview. This trial suits parents whose child receives care for a urogenital condition at Boston Children's Hospital and who are open to writing or dictating journal entries over several weeks. As an unphased trial, it offers a unique opportunity for parents to explore new ways to manage stress and anxiety through innovative journaling techniques.

Do I have to stop taking my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications. It seems focused on journaling and interviews, so it's unlikely that your medications would be affected.

What prior data suggests that this journaling intervention is safe for parents?

Research has shown that activities like journaling, part of narrative medicine, are generally safe and easy for people to do. One study found that storytelling in healthcare can improve well-being and aid in medication adherence. Reports of negative effects from journaling as a treatment are absent. Instead, it appears to enhance feelings of connection and reduce isolation. This suggests that the journaling activity in this trial is likely safe for participants, with minimal risk of negative effects. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Narrative Medicine Journaling Intervention because it offers a unique approach to helping parents of children with urogenital conditions manage their anxiety. Unlike traditional treatments that might focus on medication or therapy for anxiety, this intervention uses guided journaling to empower parents to process their experiences and emotions. This method is designed to provide emotional relief by encouraging self-reflection and personal storytelling. By potentially reducing anxiety through a non-invasive, self-directed activity, this intervention could offer a valuable, low-risk complementary option to existing anxiety treatments.

What evidence suggests that this journaling intervention might be an effective treatment for reducing anxiety in parents of children with urogenital conditions?

Research has shown that parents of children with urogenital conditions, such as differences in sex development and hypospadias, often experience high levels of anxiety. This anxiety can be as intense as that experienced by parents of critically ill infants. In this trial, all participants will engage in a Narrative Medicine Journaling Intervention, which involves guided journaling to help reduce stress. Studies on similar writing activities have shown promise in lowering anxiety and improving mental health. Writing about their experiences and feelings may provide parents with relief from stress and anxiety. ^{6 7 8 9 10}

Are You a Good Fit for This Trial?

This trial is for parents of children with urogenital conditions like differences of sex development and hypospadias. It's designed to see if writing in a journal can help them feel less stressed or anxious.

Inclusion Criteria

Able to read and understand English

Child receives care at Boston Children's Hospital

I am the parent or guardian of a child with a urogenital condition.

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

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

1 week

1 visit (virtual)

Intervention

Participants receive a physical journal with 5 writing prompts and complete 5 journal entries over several weeks

6 weeks

Self-guided

Follow-up

Participants complete a follow-up anxiety questionnaire and participate in a 45-minute interview to discuss the journaling intervention

1 week

1 visit (virtual)

What Are the Treatments Tested in This Trial?

Interventions

• Narrative Medicine Journaling Intervention

Trial Overview The study tests a 'Narrative Medicine Journaling Intervention' where participants use guided journaling prompts to express their feelings, aiming to reduce anxiety. They'll fill out questionnaires and discuss the intervention's impact in an interview.

How Is the Trial Designed?

Group I: Narrative Medicine Journaling Intervention Experimental Treatment 1 Intervention

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.

Who Is Running the Clinical Trial?

Sarah Schlegel

Lead Sponsor

Harvard Catalyst Pilot Grant

Collaborator

Trials

1

Recruited

50+

Citations

1. clinicaltrials.gov clinicaltrials.gov/study/NCT06989593?cond=Parents+and+Children&aggFilters=status%3Arec

Breaking Silence Through Story: A Narrative Medicine ... The goal of this clinical trial is to learn whether a journaling intervention can reduce stress and anxiety in parents of children with urogenital ...

2. trialx.com trialx.com/clinical-trials/listings/307192/breaking-silence-through-story-a-narrative-medicine-intervention-for-parents-of-children-with-urogenital-conditions/

A Narrative Medicine Intervention for Parents of Children ... 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 ( ...

3. medrxiv.org medrxiv.org/content/10.1101/2025.08.07.25332342v1.full.pdf

Parental Anxiety in Differences of Sex Development and ... Discussion: Parents of children with urogenital conditions experience anxiety levels comparable to those with critically ill infants despite ...

4. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/40832402/

Parental Anxiety in Differences of Sex Development and ... Parents of children with urogenital conditions experience anxiety levels comparable to those with critically ill infants despite their ...

5. researchgate.net researchgate.net/publication/342620016_Effectiveness_of_Best_Possible_Self_and_Gratitude_Writing_Intervention_on_Mental_Health_Among_Parents_of_Troubled_Children

Effectiveness of Best Possible Self and Gratitude Writing ... Introduction Parents of children with differences of sex development (DSD) and hypospadias experience significant psychological distress ...

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11232909/

Narrative Medicine: The Power of Shared Stories to Enhance ... Outcome measures included quality of life, improved medication adherence, decreased emergency room visits, overcoming of social withdrawal and ...

7. bcmj.org bcmj.org/articles/psychological-preparedness-adverse-events-necessary-addition-medical-education

Psychological preparedness for adverse events—A ... This article provides an overview of the psychological impacts of adverse events and the role of anticipatory anxiety of such events on physicians and trainees.

8. aacnjournals.org aacnjournals.org/ajcconline/article/34/2/80/32655/Narrative-Reflection-in-Critical-Care

Narrative Reflection in Critical Care - AACN Journals Narrative interventions are challenging to implement and may not always produce the expected improvement in the experience of care delivery.

9. journalofethics.ama-assn.org journalofethics.ama-assn.org/article/narrative-embodiment-and-health/2025-06

Narrative, Embodiment, and Health - AMA Journal of Ethics This article investigates roles of storytelling in human evolution and how sharing stories informs embodied experiences.

10. journals.sagepub.com journals.sagepub.com/doi/10.1177/23821205241272358

Medical Error: Using Storytelling and Reflection to Impact ... Rates of reported error story sharing increased after the intervention. Residents reported self-efficacy (I can be honest about errors) and self-awareness (I ...