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

• Published in: Patient education and counseling Vol. 115; p. 107893
• Main Authors: Hurt, Lisa, Odd, David, Mann, Mala, Beetham, Hannah, Dorgeat, Emma, Isaac, Thomas CW, Ashman, Annie, Wood, Fiona
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier B.V 01.10.2023
• Subjects: Family; Healthcare; Low birth weight; Preterm; Qualitative; Synthesis; Views; Views; Synthesis; Low birth weight; Family; Healthcare; Qualitative; Preterm
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2023.107893

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. Practice Implications: This review identifies approaches to improve experiences of parents which are consistent with the Family Centred Care model of healthcare. •We examine families’ views about the care of pre-term or low birth weight infants.•Results are based on qualitative data collected from 1280 carers in 28 countries.•We identified 8 analytic and 31 descriptive themes with high/moderate confidence.•Families had concerns about many issues relating to health care processes.•The review identifies approaches to improve the experience of parents.