Date Presented 03/26/20
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. Semistructured interviews with 22 parents and 8 primary-care physicians were conducted and analyzed. Results indicated no formal guidelines exist for this realm, and yet, 17 of 22 children with Down syndrome 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: Katherine Breithaupt
Contributing Authors: Lauren Williams, Tess Sorensen
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. Most often, for typically developing children, primary care providers recommend guidelines for when to introduce foods based on age (ex. 4-6 months). Therefore, 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 PCPs and recommendations for children with DS. The overall research question is to determine if the age and/or stage of development, that a child with DS is introduced to complementary foods, impacts his/her progression with the safety and efficiency of eating and feeding and if there are other factors that are predictive of success with feeding progression.
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 must be between 12 months – 5 years. Parents must be 18 years of age and older, families must have received care (at least one visit) through the DS clinic at CDRC (Child Development and Rehabilitation Center) and/or CDRC Feeding Clinic.
After consenting to the study, families were contacted over the phone at a scheduled time. A total of 29 families were consented and 22 completed the interview.
PCPs were located in the Portland Metropolitan area and/or had referred a patient with DS to DS or feeding clinic. They were contacted by fax, mail, and/or email. An information sheet was provided in the mailing. A total of 8 PCPs participated in this study. All surveys took place between January 2018-May 2019.
METHOD: Surveys were audio recorded and later coded to indicate common themes using index codes and conceptual labels.
RESULTS: Data analysis is currently ongoing. However, initial results indicate the following. No formal education for PCPs is in place regarding feeding for young children with DS. Recommendations are varied and are similar to typically developing children. Yet, 17 of 22 families who participated in this study reported at least one area of feeding difficulty.
CONCLUSION: Currently, no formal guidelines for feeding progression for children with DS are in place and PCPs are not provided with specific education in this area. Families therefore introduce complementary foods at quite varied times with varied results. Correlations of predictive factors for individuals who may have increased likelihood of feeding difficulties (ex. Cardiac anomalies, prematurity, gastrointestinal difficulties, later acquisition of motor milestones) will hopefully be identified as data analysis is currently ongoing. However, general recommendations for families and PCPs, such as appropriate signs of readiness, positioning needs, red flags, and optimal progression of presentation of food types, are needed to provide families with assistance to promote decreased feeding challenges throughout early childhood.
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
