Meaning Making While Your Child is in Intensive Care

NCT05627531 | Completed

• 1 other identifier: 2022-159-ACH
• Study Type: interventional
• Target: 41
• Locations: 1 country
• Sites: 1

Brief Summary

A quarter of a million children and teenagers are hospitalized annually in Pediatric Intensive Care Units (PICUs) in North America. Having a child hospitalized in a PICU is stressful and affects the mood and coping of their parents. The investigators' prior work has shown how narrative medicine may help. Narrative medicine includes at least one session reading and then having a guided discussion of a poem or short story. The readings are individually selected by the Narrative Medicine Coordinator who also provides a guided writing exercise (in the form of poetry, creative non-fiction, journaling, or fiction). After writing, the parent/guardian had the option to share their writing out loud with the Narrative Medicine Coordinator. At the end of each session, the parent/guardian receives personalized writing prompts they are encouraged to use writing each day. The Investigators want to see how this session helps parents make sense of their time in the PICU and how it may help them cope. The investigators ask participants to fill out some surveys when they enroll and three days after their session.

Conditions

Narrative Medicine

Keywords

Narrative Medicine; Intensive Care Units, Pediatric

Outcome Measures

Primary Outcomes (2)

• Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-Sp-12) Meaning subscale

  The Meaning subscale of the FACIT-Sp12 is composed of items 2,3,5, and 8. The total score ranges from 0-16, with a higher score indicating more ability to attribute meaning to life. The investigators hypothesize the score to increase. The investigators follow the work of Canada and colleagues, who validated the use of a 3-factor analysis of the FACIT-SP-12 (Canada, et al. Psycho-Oncology: 2008, 908-916).

  Baseline and 3 days post intervention/baseline

• Edmonton Symptom Assessment Scale (ESAS)

  The ESAS measures a change in physical symptoms. The total score ranges from 0 to 60, with a higher score indicating higher physical symptom burden. The investigators hypothesize no change to the score.

  Baseline and 3 days post intervention/baseline

Secondary Outcomes (2)

• Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-Sp-12) Meaning/Peace subscale

  Baseline and 3 days post intervention/baseline

• Duke University Religion Index (DUREL)

  Baseline and 3 days post intervention/baseline

Study Arms (2)

Blank composition book with encouragement to write

NO INTERVENTION

The comparison group will receive a blank composition book with encouragement to write.

Narrative Medicine

EXPERIMENTAL

The intervention group will receive a blank composition book with daily writing prompts developed during at least one in-person session with the Narrative Medicine Coordinator to discuss their writing and their writing process.

Behavioral: Narrative Medicine

Interventions

Narrative Medicine BEHAVIORAL

Intervention group completes pre- and post-intervention measures, composition book and guided reading, discussion, and writing with narrative medicine coordinator.

Narrative Medicine

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Legal guardian 18 years or older of a child under age 18 years in the PICU at time of enrollment and on PICU service
• Able to read and write English
• Patient PICU admission is minimum of hospitalization day 3

You may not qualify if:

• Child admitted to PICU as overflow from any other critical care area and/or not on PICU service
• Parent is an Akron Children's Hospital Palliative Care employee
• Parent/legal guardian is less than 18 years old
• Spouse or partner enrolled in a writing intervention study
• Enrollment in this study on a prior PICU admission

Sponsors & Collaborators

• Akron Children's Hospital: lead

Study Sites (1)

Akron Children's Hospital

Akron, Ohio, 44308, United States

Location

MeSH Terms

Conditions

Narrative Medicine

Condition Hierarchy (Ancestors)

Narration; Communication; Behavior

Study Officials

• Daniel H Grossoehme, DMin, MS

  Rebecca D. Considine Research Institute, Akron Children's Hospital

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NON RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: Quasi-experimental design with untreated comparison group with a dependent pre- and post-test sample developed using non-probability convenience sampling

Study Record Dates

• First Submitted: November 14, 2022
• First Posted: November 25, 2022
• Study Start: November 9, 2022
• Primary Completion: September 9, 2024
• Study Completion: September 9, 2024
• Last Updated: August 7, 2025

Record last verified: 2025-08

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)