Caregivers' perception of the role of the socio-environment on their extremely preterm child's well-being.
Crisma J Emmanuel, Kathy A Knafl, Sharron L Docherty and 6 others
PMID 35623186WHAT IT FOUND
Mothers of adolescents born extremely preterm described their own caregiving and family/community support as central to their child's well-being.
Unsafe neighborhoods, limited resources, and difficult access to healthcare and school services were barriers.
Key findings
01All 20 mothers interviewed said they were the primary caregiver throughout their child's life and described this role as central to their extremely preterm child's development and well-being.
02Mothers described family and community conditions, including support, economic resources, and access to healthcare and school services, as contributors or barriers to child and caregiver well-being.
03Mothers emphasized early intervention services, including head start, speech and occupational therapy, and believed these helped their child reach milestones earlier.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
Only 20 mothers were interviewed, and all participants were mothers, so the study does not describe fathers or other caregivers. The sample included few Latinx participants, 5%, and the authors could not fully explore race, ethnicity, gender, or culture. The study could not compare experiences by child health or diagnosis because meaning saturation related to the general experience of mothers raising an extremely premature child. It is a qualitative perception study, not a trial or outcome study, so it cannot show that any service, family factor, or support caused better well-being. Interviews were remote because of COVID, one interview was not audio recorded, and participants were from one southeastern U.S. cohort, so findings may not transfer to other settings. The children were 16 to 18 years old at interviews, so accounts about early intervention were retrospective.
Declared interests
The supplied text includes only the heading Declaration of Competing Interest and gives no funder or conflict details.
The easy way to misread this
Do not read the mothers' reports that early intervention helped milestones as proof that speech or occupational therapy improves outcomes. This was a qualitative study of 20 mothers, with no comparison group or measured outcomes.