Session 6, Symposium: Early feeding in children with Down syndrome

Organizer: Silvana Mengoni

Presenters:

  1. Laura Hielscher, University of Hertfordshire, l.k.hielscher@herts.ac.uk
  2. Erin Cochran, Oregon Health & Science University, cochraer@ohsu.edu
  3. Silvana Mengoni, University of Hertfordshire, s.mengoni@herts.ac.uk

Discussant: Nicola Enoch, Down Syndrome UK and Positive About Down Syndrome nicola.enoch@downsyndromeuk.co.uk

This symposium brings together research on early feeding experiences for children with Down syndrome, with a focus on the preschool years. Research will explore feeding problems during this time frame and support that parents and healthcare professionals give and/or receive. In particular, we will highlight outstanding support needs for both parents and professionals, including the need for consistent and evidence-based guidance.

The first presentation from Laura Hielscher will provide an overview of existing research about the period of complementary feeding (i.e. introducing solid food or weaning) based on a recently-completed scoping review. The presentation will highlight potential feeding problems during this time, along with factors that may affect this.

Following on from this, the second presentation from Erin Cochran reports family experiences of introducing complementary foods and healthcare professionals’ experience of supporting families and the training they receive to do so. This study highlights the lack of guidance available to both families and healthcare professionals, and the need for published guidelines.

The final presentation from Silvana Mengoni brings together the experiences of parents and healthcare professionals supporting feeding in children with Down syndrome across the early years. The study highlights tensions between parents’ need for support and service provision, with parents reporting a lack of feeding support and knowledge specific to Down syndrome.

Nicola Enoch, as discussant, will briefly reflect on each presentation, before questions from the audience. Following all presentations, she will also provide an overall reflection with an emphasis on the implications for families and potential next steps for research.

Scoping Review: Complementary feeding and early eating experiences of children with Down syndrome

Authors: Laura Hielscher, Karen Irvine, Amanda Ludlow, Samantha Rogers, Silvana Mengoni

University of Hertfordshire, Hatfield, UK

l.k.hielscher@herts.ac.uk

Background: Children with Down syndrome may experience more challenges in early feeding than typically developing (TD) children. Children with Down syndrome are likely to be introduced to complementary foods later than TD children, but there has been little research into the complementary feeding period and there is a lack of guidance available for professionals and families.

Research Question: What is the existing research that describes feeding problems and early eating experiences relating to the period of complementary feeding in children with Down syndrome?

Method: A scoping review was conducted to address the research question.

Results: Eighteen journal articles met the inclusion criteria. Children with Down syndrome were introduced to complementary foods later than TD children, and progress to more challenging food textures at a slower rate. Gross and fine motor skill delays and sensory difficulties can contribute to secondary feeding problems such as difficulties taking an active bite and reduced awareness of food on lips and tongue. Differences in parental feeding practices were observed in comparison to TD. Parents reported exercising more caution and employing more restrictive or controlling feeding practices, as well as higher levels of concern regarding their child’s weight.

Conclusions: Early and ongoing guidance that is specific to children with Down syndrome is vital for parents throughout the complementary feeding period. This should aim to address parental concerns and provide support when feeding problems occur, to minimize delays and encourage optimum development of eating abilities. Future research should aim to understand how feeding problems during the complementary period develop over time and explore interventions to address feeding problems in early life.

Introduction of Complementary Foods for Children with Down syndrome: Parent and Physician Experiences

Authors: Erin Cochran, Katherine Breithaupt, Lauren Williams, Kristi Atkins

Oregon Health & Science University

cochraer@ohsu.edu

Aims: Children with Down syndrome are at risk for feeding difficulties due to medical comorbidities and associated developmental delays, yet there are no peer-reviewed published standards to guide families with feeding progression. This study explored family experiences introducing complementary foods (e.g., purees, table food) for children with Down syndrome. A secondary aim was to describe primary care provider (PCP) training on early progression of feeding for children with Down syndrome and investigate the recommendations they gave families.

Methods: Semi-structured interviews with twenty-two parents and eight primary care providers (PCPs) were conducted. Descriptive statistics were used to characterize the sample and to report on findings related to feeding milestones. Qualitative interview data were considered in an iterative and cyclical fashion.

Results: Parental themes included differences in feeding for children with Down syndrome, limited guidance that was not always followed, feeding difficulties and related stress, and gross motor milestone acquisition related to feeding milestones. PCP themes included limited resources/training, providing similar recommendations for children with and without Down syndrome, and desire for training/resources.

Conclusions: Published guidelines on feeding progression for children with Down syndrome are needed, including considerations for determining when skill and interest converge to signal safe introduction of complementary foods.

Experiences of feeding young children with Down Syndrome: Parental and health professional perspectives

Authors: Silvana E. Mengoni, Bobbie Smith, Helena Wythe & Samantha L Rogers

University of Hertfordshire, Hatfield, UK

s.mengoni@herts.ac.uk

Background: Children with Down syndrome are more likely to experience feeding and eating problems in the early years, and families report unmet support needs compared to typically developing children.

Research Question: This study aimed to explore and synthesize the perspectives of parents and professionals covering milk feeding, introduction of complementary foods and mealtimes, and the support needed and received during this time for young children with Down syndrome.

Method: Eight mothers and twelve healthcare professionals took part in individual semi-structured interviews. All participants had, or had supported, children with Down syndrome aged 0-5 years, and in their interviews were asked to reflect on their experiences with feeding.

Results: Reflexive thematic analysis highlighted commonalities and tensions across the two groups. Mothers had clear feeding goals, often to breastfeed, use baby-led weaning approaches and share family mealtimes, and they adapted their journeys to meet their child’s individual needs. Emotional, practical and informed support was key, and parents sought this from professionals, peers and online sources. The role of professionals was central, but a lack of knowledge about Down syndrome and difficulties accessing support undermined mothers’ confidence in services.

Conclusions: Breastfeeding and family mealtimes held significant value to mothers, and specialist support is needed to help families achieve these goals. Professionals need knowledge and experience of Down syndrome to facilitate a trusted relationship with parents.