What are the implications of Zika Virus for infant feeding? A synthesis of qualitative evidence concerning Congenital Zika Syndrome (CZS) and comparable conditions

If a mother contracts the Zika Virus before or during pregnancy, then there is a risk of the child developing Congenital Zika Syndrome (CZS). An infant can then experience problems feeding due to the specific physical and developmental consequences of Congenital Zika Syndrome (CZS), such as microcephaly, dysphagia and an increased likelihood of choking. This qualitative evidence synthesis accesses direct and indirect evidence to inform WHO infant feeding guidelines. We conducted a qualitative evidence synthesis of the values and preferences of relevant stakeholders (e.g. pregnant women, mothers, family members and health practitioners) concerning infant (0–2 years) feeding in the presence of: 1) CZS (the‘direct evidence’); 2) severe disability and nonprogressive, chronic encephalopathies (‘indirect evidence’), which present with similar problems. Authors’ findings were extracted, synthesised using thematic synthesis techniques, and confidence in the findings were assessed using GRADE-CERQual. Six CZS-specific studies (all from Brazil) were included in the direct evidence, with a further eight indirect studies reporting feeding difficulties in infants with severe disability and nonprogressive, chronic encephalopathies. Included studies highlighted: breast-feeding represented the preference for all mothers in the studies in both reviews, and the inability to do so affected bonding between parents and child, and generated fear and anxiety relating to feeding choices, especially around the risks of choking and swallowing; the perception that health professionals were often unable to offer appropriate advice; the potential value of training; and a strong desire to achieve individual maternal autonomy in infant feeding decisions. Confidence in most findings ranged from low to moderate. The evidence base has limitations, but consistently reported that parents of children with feeding difficulties due to Congenital Zika Syndrome, or similar, need information, advice and counselling, and substantial emotional support. Parents perceive that these needs are often neither recognised nor satisfied; optimal feeding and support strategies for this population have not yet been identified.Author summary: If a mother contracts the Zika Virus during pregnancy, there is a risk of the child developing Congenital Zika Syndrome (CZS), which can lead to feeding difficulties due to swallowing and choking. It is therefore important to understand the lived experiences of those who support infants who have contracted CZS, so that infant feeding can be improved. The review and synthesis identified only a small number of relevant CZS qualitative studies (n = 6), all from Brazil (the ‘direct’ evidence). As a result, the review was expanded to include qualitative studies of the lived experience of mothers and others regarding infant feeding in the presence of similar physical problems, e.g. Cerebral Palsy (the ‘indirect’ evidence, n = 8). The phenomenon of interest was the same, though the underlying conditions were different. Both the direct and indirect evidence documented parental fear, anxiety and uncertainty around the problems they faced; the difficulties for maternal-child bonding; the potential value of training; and emphasised the perception that health professionals were poorly equipped to provide relevant information and advice. In particular, mothers wanted the specific feeding difficulties of their children to be taken into account when receiving advice and counselling. This synthesis has informed the WHO infant feeding guidelines.