Date Presented 04/13/21
The purpose is to begin to address the lack of consistent guidelines for when, and how, families should begin to introduce complementary foods for children with Down syndrome (DS). Semistructured interviews with 22 parents and 8 primary care providers were conducted and analyzed. Results indicated that no formal guidelines exist for this realm, and yet 17 of 22 children have experienced some level of feeding difficulty. Guidelines for feeding progression for this population are needed to improve feeding outcomes.
Primary Author and Speaker: Erin Cochran
Additional Authors and Speakers: Winifred Dunn
PURPOSE: The purpose of this study is to begin to address the lack of formal and consistent guidelines for when, and how, families should begin to introduce complementary foods for children with Down syndrome (DS). Complementary feeding refers to the transition from exclusive breast or bottle feeding to the introduction of family foods. Children with DS develop at different rates than typically developing children and many have immature oral motor skills and feeding difficulties as a result of hypotonia and other comorbidities such as cardiac anomalies or gastrointestinal difficulties. However, there are inconsistent practices and no clear evidence as to when it is best to introduce complementary foods safely and how to promote optimal progression towards a typical diet into the toddler years and childhood for children with DS. Due to the frequent practice of recommending introduction of foods based on age, it can be a challenge for parents of children with DS to know when it is safest and most appropriate to introduce foods. Additionally, this study explores the current education for primary care providers (PCP) and recommendations for children with DS. The overall research question is to determine what parental and PCP experiences are, and knowledge regarding, progression of feeding skills. Occupational therapists play a significant role in the progression of feeding skills, a vital activity daily living, and would benefit from guidelines to support patients and families.
DESIGN: Semi-structured interviews were conducted based on two surveys created for this study, one for PCPs and one for parents of children with DS. At the time of the interview, the child with DS was between 12 months – 5 years. Parents were 18 years of age and older, families must have received care (at least one visit) through the DS clinic or feeding clinic at a Pacific NW hospital. PCPs were located in the local Metropolitan area and/or had referred a patient with DS to DS or feeding clinic. They were contacted by fax, mail, and/or email.
METHOD: 22 parents and 8 PCPs participated in this study. All surveys took place between January 2018 and May 2019. Surveys were audio recorded and later coded to indicate common themes and descriptive statistics were used to characterize the sample.
RESULTS: Parental themes included (1) differences in feeding for children with DS, (2) limited guidance and decisions to not specifically follow recommendations, and (3) varied feeding difficulties regarding the introduction of complementary foods. PCP themes included (1) limited resources/training, (2) providing similar recommendations, and (3) desire for training/resources.
CONCLUSION: This study found that families of children with DS receive varied and inconsistent information, yet not substantially different advice than for children without DS, regarding the introduction of complementary foods. This is despite known delayed overall developmental progression and high prevalence of feeding difficulties. Frequently parents chose to provide first complementary foods at a later age than for their children without DS. Other families though started complementary foods at the same time as their other children. PCPs indicated a desire for evidence based guidelines for this high risk population in regards to feeding skills as they have generally had minimal specific education on this topic. Without further research on this topic, it is unclear what the optimal and safe timing is for the introduction of complementary foods for children with DS.
References
Weijerman, M.E., & de Winter, J.P. (2010). Clinical practice: The care of children with Down syndrome. European Journal of Pediatrics, 169, 1445-1452. https://doi.org/10.1007/s00431-010-1253-0
Bull, M.J. (2011). Clinical report – Health supervision for children with Down syndrome. Pediatrics, 128(2), 393-406. https://doi.org/10.1542/peds.2011-1605
Jackson, A., Maybee, J., Moran, M.K., Wolter-Warmerdam, K., & Hickey, F. (2016). Clinical characteristics of dysphagia in children with Down syndrome. Dysphagia, 31, 663-671. https://doi.org/10.1007/s00455-016-9725-7
Lewis, E., Kritzinger, A. (2004). Parental experiences of feeding problems in their infants with Down syndrome. Down Syndrome Research and Practice, 9(2), 34-42. https://doi.org/10.3104/reports.291
