The experiences of new mothers accessing feeding support for infants with down syndrome during the COVID-19 pandemic

Abstract

Infants with Down syndrome are more likely to experience feeding problems and mothers are likely to require more feeding support than mothers of typically developing infants. During the COVID-19 pandemic, many feeding support services changed from face-to-face to online, which impacted some maternal feeding experiences negatively, but no studies to date have explored the impact for mothers of infants with Down syndrome. Thematic analysis was conducted on semi-structured interviews from thirteen new mothers of infants (aged 8–17 months) with Down syndrome in the UK. Three superordinate themes were generated: (1) Every baby with Down syndrome has a unique journey, (2) There’s no point asking, they won’t know, (3) Lack of in-person support. Many mothers expressed frustrations over health professionals’ lack of Down syndrome specific knowledge resulting in unmet needs, further magnified due to the nature of the virtual support being offered. Moreover, mothers struggled with reduced social support from other mothers when encountering feeding problems. These results hold real-world implications for health professionals who could provide more specialised face-to-face feeding support to mothers of infants with Down syndrome. This should be prioritised for children’s overall development and mothers’ wellbeing.

Keywords:

• Down syndrome
• feeding problems
• COVID-19

Acknowledgements

Thank you to all of the participants who took part, and to Positive about Down Syndrome, the Down Syndrome Association, Sandra Redman and Barnet Integrated Group for Down Syndrome, Karen Afford and Hertfordshire Community NHS Trust for their assistance with recruitment for this study.

Disclosure statement

There are no competing interests to declare.

Additional information

Funding

This work was supported by a PhD Studentship from the University of Hertfordshire.