Digital Storytelling in the NICU

Study Overview
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Brief Summary
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Our long-term goal is to reduce suffering and long-term negative consequences for families in the Neonatal Intensive Care Unit (NICU). The overall purpose of this study is to test feasibility of a legacy intervention for NICU parents.

Detailed Description
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Specific aims are: (1) To determine the feasibility of a legacy intervention for NICU parents; and (2) to determine the feasibility of psychosocial instruments for NICU parents. We will recruit parents (N = 12) of 6 infants in the NICU who have received a palliative care consultation and expected to die by 1 year of age based on provider report. We will use a one-group pre- and post-test design. The intervention will be delivered by the PI or trained study staff conducting video-taped interviews with parents in private NICU rooms to create a digital story about their infant. The videographer will use the video and music selected by parents to create a digital story about the infant. The final digital story is provided to parents on a DVD or unlisted (private) YouTube link to keep. Parents will complete electronic psychosocial measures at enrollment (baseline/pre-intervention) and post-intervention.

Official Title
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Preliminary Pilot Study of Digital Storytelling in the NICU

Conditions
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Bereavement

Intervention / Treatment
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* Behavioral: Digital Storytelling


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Parents of infants in the NICU who have received a palliative care consult and expected to die by 1 year of age based on provider report: Parent caregivers (ages 18 years and up) of infants Parents will be defined as the legal guardians who act in the role of the infant's primary and secondary parent caregivers based on parent self-report. Able to speak and understand English Absence of cognitive impairment

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Digital Storytelling<br>Legacy intervention via digital story for NICU parents | Behavioral: Digital Storytelling<br>* Creation of a digital story about the infant with video and music selected by parents<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in PROMIS Anxiety survey (short form) | The PROMIS Anxiety (short form) survey measures the extent of anxiety. The range is 5-40, higher scores indicate higher anxiety | Baseline and 1 month | 
| Change in PROMIS Depression Survey (short form) | The PROMIS Depression survey measures the extent of depression. The range is 5-40, with 5 being least depressed and 40 being the most depressed. | Baseline and 1 month | 
| Change in PROMIS Sleep Disturbance survey (short form) | The PROMIS Sleep Disturbance instruments assess self-reported perceptions of sleep quality, sleep depth, and restoration associated with sleep. Scores range from 4-20. Low scores indicate better sleep and high scores indicate worse sleep. | Baseline and 1 month | 
| Change in PROMIS Meaning and Purpose survey (short form) | The PROMIS Meaning and Purpose survey assess one's sense of life having purpose and that there are good reasons for living. Scores range from 6-30. Higher scores indicated perceptions of hopefulness, optimism, goal-directedness, and feelings that one's life is worthy. | Baseline and 1 month | 
| Change in Benefit Finding Scale | Benefit Finding Scale measures the degree of deriving positive growth from adversity. Scores range from 17-85 with high scores indicating more positive growth. | Baseline and 1 month | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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NICU