What matters to families about the healthcare of preterm or low birth weight infants: A qualitative evidence synthesis.

Abstract

We examined what matters to families about the healthcare provided to preterm or LBW infants in hospital and the community, to ensure that care meets the needs of infants and parents. We searched databases to identify eligible studies examining the views and expectations of families. Study quality was assessed using the CASP checklist for qualitative studies. The GRADE-CERQual approach was used to assess confidence in review findings. Studies were sampled and data analysed using thematic synthesis. 222 studies (227 papers) were eligible for inclusion. 54 studies (57 papers) were sampled based on data richness, methodological quality, and representation across settings. Eight analytical themes were identified. Confidence in results was moderate to high. What mattered was a positive outcome for the child; active involvement in care; being supported to cope at home after discharge; emotional support; the healthcare environment; information needs met; logistical support available; and positive relationships with staff. Although parents and family members reported a variety of experiences in the care of their infant, we found high consistency in what matters to families. This review identifies approaches to improve experiences of parents which are consistent with the Family Centred Care model of healthcare.