Feeding an infant with Down syndrome:mothers' experiences of support from NHS and charities

<b>Objective </b><br/>To understand the experiences of mothers of babies with Down syndrome regarding infant feeding support provided by the NHS and charitable organisations. <br/><br/><b>Methods</b><br/>The study took a qualitative approach using semi-structured one-to-one interviews. Following data collection, a six-step reflexive thematic analysis was undertaken. To be eligible for inclusion, participants had to be 1) a mother, father, or primary care giver 2) to an infant aged between 0-12 months with a positive diagnosis of Down syndrome and 3) live within the UK. Six mothers who had babies with Down syndrome were interviewed; three were first-time mothers and three also had other children.<br/><br/><b>Results</b><br/>The following four themes were identified: <br/>1) will I ever feel happy about this pregnancy?; <br/>2) charities changed everything; <br/>3) these are my feeding choices; <br/>4) feeding intervention using a nasogastric tube. <br/><br/>The first theme explores mothers’ journeys through grief following a Down syndrome diagnosis. Mothers experienced an array of emotions that varied in intensity including sadness, worry, guilt, and anxiety, and focused mainly on the unknown journey ahead with a baby with Down syndrome. The second theme focused on mothers seeking the support of a charity to access timely advice for infant-feeding problems. The third theme discussed mothers feeling that healthcare professionals lacked the ability to support, communicate and offer positive encouragement around breastfeeding a baby with Down syndrome. The final theme explored the conflicting information given to mothers about nasogastric tube feeding. <br/><br/><b>Conclusion</b><br/>Mothers of babies with Down syndrome face challenges with infant feeding and require compassionate care and increased support. NHS support may not meet all women’s needs and some women find additional, improved quality support from charities. NHS support needs to be improved, and women signposted to charities.