Parents of Healthy Newborns
Conditions
Brief summary
A 10 minute baseline survey will be administered to parents of healthy newborn infants while in the hospital after delivery at Brigham and Women's Hospital, to be followed by a 25 minute survey 3-24 months later. We will measure parents' attitudes and preferences related to genome screening of newborns. The specific aims of this study are: 1. To investigate whether parents' opinions regarding genome screening of newborns change between the first 48 hours post-partum and 3-24 months post-partum. a. We hypothesize that there will not be significant differences between interest in genome screening results in the 48 hours post-partum compared to 3-24 months post-partum. 2. To determine whether seeing hypothetical genome screening results affects parents' decisions regarding whether they would want genome screening for their newborn. 1. We expect many parents to state initially (in the 48 hours post-partum) that they would elect to have genome screening for their newborn if it were available. In the follow-up survey, half of study participants will receive hypothetical scenarios in which they will need to struggle with the probabilistic and ambiguous nature of the information that could be derived from genome sequencing. We will examine whether this alters their preferences. We will also explore whether parents who receive hypothetical genome screening results scenarios are more likely to alter their preferences than parents who do not receive hypothetical scenarios.
Interventions
OTHERGenetics education at baseline
OTHERHypothetical genomic scenarios at follow-up
Sponsors
Brigham and Women's Hospital
Study design
Allocation
RANDOMIZED
Masking
NONE
Eligibility
Sex/Gender
ALL
Healthy volunteers
Yes
Inclusion criteria
* Parent of a healthy newborn in the BWH Department of Obstetrics * English-speaking
Exclusion criteria
* Impaired decision-making capacity * Newborn with life-threatening health concerns in the 48 hours post-partum
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Interest in genome screening for newborn if this service were available through a research study | Change between baseline and 3-24 month follow-up | This is a question created by the investigators. It uses a 5-point Likert scale to measure parents' self-reported interest in genome screening for their newborn. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Rate of refusal of newborn screening | baseline | Newborn screening refusals are very rare. When they occur, they are tracked by nurses on the postpartum inpatient unit. At the start of all shifts for study recruitment, the research assistant will ask the nurse-in-charge if any patients refused newborn screening since the previous study recruitment shift. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Parental Stress | 3-28 month follow-up | Parenting Stress Index- short form |
| Postpartum bonding | 3-28 month follow-up | Postpartum Bonding Questionnaire |
Countries
United States
Outcome results
None listed