Bereavement
Conditions
Keywords
NICU
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.
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.
Interventions
BEHAVIORALDigital Storytelling
Creation of a digital story about the infant with video and music selected by parents
Sponsors
Vanderbilt University
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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. |
Countries
United States
Outcome results
None listed