The impact of preterm birth <37 weeks on parents and families: a cross-sectional study in the 2 years after discharge from the neonatal intensive care unit

Abstract

BackgroundLittle is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). Our aims were (1) to describe the impact of preterm birth on parents and families and (2) and to identify potentially modifiable determinants of parent and family impact.MethodsWe surveyed 196 parents of preterm infants <24 months corrected age in 3 specialty clinics (82% response rate). Primary outcomes were: (1) the Impact on Family Scale total score; and (2) the Infant Toddler Quality of Life parent emotion and (3) time limitations scores. Potentially modifiable factors were use of community-based services, financial burdens, and health-related social problems. We estimated associations of potentially modifiable factors with outcomes, adjusting for socio-demographic and infant characteristics using linear regression.ResultsMedian (inter-quartile range) infant gestational age was 28 (26–31) weeks. Higher Impact on Family scores (indicating worse effects on family functioning) were associated with taking ≥3 unpaid hours/week off from work, increased debt, financial worry, unsafe home environment and social isolation. Lower parent emotion scores (indicating greater impact on the parent) were also associated with social isolation and unpaid time off from work. Lower parent time limitations scores were associated with social isolation, unpaid time off from work, financial worry, and an unsafe home environment. In contrast, higher parent time limitations scores (indicating less impact) were associated with enrollment in early intervention and Medicaid.ConclusionsInterventions to reduce social isolation, lessen financial burden, improve home safety, and increase enrollment in early intervention and Medicaid all have the potential to lessen the impact of preterm birth on parents and families.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-017-0602-3) contains supplementary material, which is available to authorized users.

Experiences of Mothers of Extremely Preterm Infants after Hospital Discharge

“…True to our findings, taking care of a preterm baby together with other children can create relationship issues (Aagaard et al, 2015), causing a mother to withdraw from her professional career and cause social isolation (Lakshmanan et al, 2017;Murdoch & Franck, 2012). Families need time to adapt to their new responsibilities and daily routines, requesting support to do so (Bowles, 2016).…”

“…Hospitalization in the NICU reduces the interaction between a mother and her child and it affects their bond after discharge (Fleury, Parpinelli & Makuch, 2014). According to Lakshmanan et al (2017), extremely preterm infants' families constantly deal with chronic diseases and daily medical procedures, which have a negative impact on their quality of life.…”

American Academy of Nursing on policy: Reducing preterm births in the United States: Maternal infant health, child, adolescent and family, and women's health expert panels

“…Prematurely born neonates are more likely to have increased health-related and neurodevelopmental delays including increased mental health risks for anxiety, depression and even more serious psychosis that can last a lifetime (Blencowe et al, 2013;D'Agata, Young, Cong, Grasso, & McGrath, 2016;Singh, Kenney, Ghandour, Dogan, & Lu, 2013). Quality of life for parents is also negatively impacted because of emotional stress, depression, acute and post-traumatic stress disorder (PTSD), physical fatigue, marital distress, as well as increased medical insurance needs and costs for out-of-pocket expenses (Blencowe et al, 2013;Hodek, von der Schulenburg, & Mittendorf, 2011;Lakshmanan et al, 2017). Readmissions of preterm infants to pediatric hospitals after initial discharge are costly as well and comprise a substantial proportion of all readmissions in children with medical complexities (Hudson, 2013;Kuzniewicz, Parker, Schnake-Mahl, & Escobar, 2013).…”

Discontinuity of outpatient follow-up of risk children: perspective of mothers

“…It should be emphasized that this factor combined with a poor public transport system and long distances from the follow-up service may constitute additional barriers to non-follow-up. Findings from national and international studies have indicated that families with lower purchasing power tend to discontinue follow-up of their children 6,18,[23][24] .…”