Caregivers' perception of the role of the socio-environment on their extremely preterm child's well-being

Purpose: The purpose of this qualitative descriptive study was to explore primary caregivers' perception of how social-environmental characteristics, and their own role as primary caregivers, affected their extremely preterm adolescent's well-being.

Methods: Participants were 20 mothers who identified as the primary caregiver of an adolescent born extremely prematurely (<28 weeks gestation) enrolled in the ELGAN cohort study. Data was collected through individual interviews and was analyzed using inductive content analysis.

Results: A total of three themes, and five subthemes, were identified. The two main themes were "familial impact to health and well-being," and "contributors and barriers at the community level." This study described specific familial and community contributors to child and caregiver well-being, including: the importance of advocacy, participating in community activities, and social and familial support networks.

Conclusions: Overall, while there are individual level characteristics that contribute to well-being, a support structure at the family and community level is essential to children born extremely prematurely, and their mother's, well-being.

Practice implications: Healthcare providers caring for these families should understand that not only are extremely preterm youth affected by prematurity, but caregivers are also deeply impacted. Therefore, it is essential that maternal and family care is emphasized by nurses and healthcare providers.