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Introduction Preterm and low birth weight (LBW) infants have complex long-term healthcare needs. The impact on families of caring for a sick infant is increasingly understood, with consequences for attachment and bonding and parental health and wellbeing immediately after birth and beyond. In this qualitative evidence synthesis, we aimed to understand what matters to families about the care provided to preterm or LBW infants in hospital and the community. Methods We searched nine databases and the reference lists of included studies for eligible studies using qualitative methods examining the views of families on healthcare for preterm or LBW infants. We used the Critical Appraisal Skills Programme checklist for qualitative studies to assess study quality and the GRADE-CERQual approach to assess confidence in each review finding. Studies were sampled after data saturation, and thematic synthesis techniques were used for analysis. Results 203 studies were eligible for inclusion. We selected 49 studies from 25 countries for the analysis, based on methodological quality, data richness and on ensuring representation from settings with varying resources. Eight analytical themes were identified. Confidence in most results was moderate to high. 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; their information needs were met; logistical support was available; and positive relationships with staff. Conclusions Enabling a positive post-natal period for families of small and sick infants is difficult. Experiences of care for preterm or LBW infants vary, but we found high consistency in what matters to families. This information can be used to shape global recommendations on support for infants and carers. More research is needed on what matters to parents who receive community-based care, especially in low resource settings. Key messages • We found high consistency across settings in what matters to families in the care of preterm infants. • Understanding carers views and values ensures that care can be planned to meet the needs of infants and families.

Background: Preterm 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. Methods: We 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. Results: 203 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. Conclusion: We 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.