Digital Storytelling in the NICU
Study Details
Study Description
Brief Summary
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.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
|
N/A |
Detailed Description
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.
Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| Experimental: Digital Storytelling Legacy intervention via digital story for NICU parents |
Behavioral: Digital Storytelling
Creation of a digital story about the infant with video and music selected by parents
|
Outcome Measures
Primary Outcome Measures
- Change in PROMIS Anxiety survey (short form) [Baseline and 1 month]
The PROMIS Anxiety (short form) survey measures the extent of anxiety. The range is 5-40, higher scores indicate higher anxiety
- Change in PROMIS Depression Survey (short form) [Baseline and 1 month]
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.
- Change in PROMIS Sleep Disturbance survey (short form) [Baseline and 1 month]
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.
- Change in PROMIS Meaning and Purpose survey (short form) [Baseline and 1 month]
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.
- Change in Benefit Finding Scale [Baseline and 1 month]
Benefit Finding Scale measures the degree of deriving positive growth from adversity. Scores range from 17-85 with high scores indicating more positive growth.
Eligibility Criteria
Criteria
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
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | Vanderbilt University | Nolensville | Tennessee | United States | 37135 |
Sponsors and Collaborators
- Vanderbilt University
Investigators
- Principal Investigator: Terrah Akard, PhD, Vanderbilt University
Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- 191469