Abstract
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.
Keywords
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Article info
Publication history
Published online: May 25, 2022
Accepted:
May 6,
2022
Received in revised form:
April 29,
2022
Received:
February 10,
2022
Identification
Copyright
© 2022 Elsevier Inc. All rights reserved.
