Table 4.

Parent-Specific Questions^*.

Characteristic	Parents n = 197
Year of diagnosis
Before 2010	31/193 (16%)
2010–2015	49/193 (25%)
2016 and beyond	112/193 (57%)
Child did not survive	33/193 (17%)
Age at death
0–6 months	29/33 (88%)
7–12 months	3/33 (9%)
1–5 years	1/33 (3.0%)
Healthcare costs made access to services difficult
No	105/142 (74%)
Yes	27/142 (19%)
Not sure	10/142 (7.0%)
Health or mental health affected by your child’s long-term complications of NEC
Yes	106/143 (74%)
No	37/103 (26%)
Health effects experienced
Difficulty Sleeping	63/103 (61%)
Increased anxiety	86/103 (83%)
Worry about the future	82/103 (80%)
Post-Traumatic Stress Disorder	81/103 (79%)
Financial stress	44/103 (43%)
Difficulty balancing work-life obligations	51/103 (50%)
Feelings of isolation and despair	54/103 (52%)
Constant high stress and pressure	48/103 (47%)
Depression	50/103 (49%)
High blood pressure	16/103 (16%)
Providers talked about the long-term effects of NEC	38/140 (27%)
Difference in what was told and what was experienced
No	15/38 (39%)
Yes	22/38 (58%)
Not sure	1/38 (2.6%)

^*Values are n/N (%) of questions answered.