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

Abstract

ABSTRACTBackgroundPreterm and low birth weight (LBW) infants have complex healthcare needs. In this qualitative evidence synthesis, we aimed to understand what matters to families about the healthcare provided from birth to preterm or LBW infants, to inform appropriate planning and delivery of care.MethodsWe searched nine databases and the reference lists of included studies to identify eligible studies that used qualitative methods to examine the views of families relating to healthcare for preterm or LBW infants. Studies in all countries (low, middle, and high-income) and healthcare settings (home, community, primary, secondary and tertiary care) were eligible for inclusion. Study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative studies. The GRADE-CERQual approach was used to assess confidence in each review finding. Thematic synthesis techniques were used for analysis.Results203 studies (in 208 papers) were eligible for inclusion. 49 studies (in 51 papers) from 25 countries were sampled for the analysis, based on pre-specified criteria (methodological quality; data richness; and ensuring representation across continents and from settings with varying resources). Eight analytical themes were identified. What mattered to carers was: a positive outcome for the child; active involvement in care; support to cope at home after discharge; emotional support for the family; the healthcare environment; information needs were met; logistical support was available; and positive relationships with staff. Confidence in most results was high to moderate.ConclusionWe found high consistency in what matters to families regardless of location or resources, even though carers reported a variety of experiences in the care of their preterm or LBW infant. Families views on care in neonatal units have been extensively studied. Further research is needed on what matters to fathers and other family members, and to families receiving community-based care especially in low and middle-income countries.What is already known on this topicPreterm and low birthweight births are a major cause of poor health globally.Despite advances in neonatal care, preterm and low birthweight infants often require complex and prolonged medical intervention, with survivors at increased risk of lifelong disability and poor quality of life.What this study addsCarers have strong views about what matters in relation to the healthcare provided to preterm and low birthweight infants, and these are remarkably consistent across different countries and healthcare settings.What matters to carers is a positive outcome for the child; active involvement in care; support to cope at home after discharge; emotional support for the family; the healthcare environment; information needs are met; logistical support is available; and positive relationships with staff.How this study might affect research, practice or policyIt is vital that international and local organisations working to ensure high-quality and equitable care for small and sick newborns worldwide understand what matters to families.Further research is needed on the views of fathers and other family members, and on families receiving community-based care especially in low and middle-income countries.