Measuring feeding difficulties in toddlers with Down syndrome
Introduction
Feeding problems in early childhood are shown to have a negative impact on development and can be a source of caregiver stress (Lindberg, Bohlin, Hagekull & Thunstrom, 1994). Although these kinds of problems occur frequently across the population, their incidence is much higher in children with developmental disabilities than it is in typically developing children. For instance, Manikam and Perman (2000) reported incidence rates of 80% compared to 25% in the typical population. It is estimated that 57 percent of infants with Down Syndrome (DS) have feeding difficulties during the neonatal period (Spahis & Wilson, 1999). These problems often remain present throughout life, but are particularly prevalent in children below the age of 7 years, for whom it is estimated that up to 80 percent have problems with eating (Pipes & Holm, 1980; Van Dyke, Peterson, & Hoffman, 1990). However, it should be noted that a direct comparison between these populations is complicated due to the fact that different definitions of what constitutes a feeding problem are used in these studies.
Children with DS often have anatomical and physiological anomalies, such as a smaller mouth cavity, a smaller upper jaw, dental anomalies, weaker lip tension, and stronger tongue tension (Faulks, Collado, Mazille, Veyrune, & Hennequin, 2008; Van den Engel-Hoek, 2006). This leads to oral motor problems in roughly four out of five children with DS (Field, Garland, & Williams, 2003). It has also been shown that children with DS chew less effectively and that tongue protrusion is frequent, which can lead to food being expelled from the mouth and evoke a pharyngeal reflex (Van den Engel-Hoek, 2006). Spoon-feeding is also more difficult, as the sucking response remains present for longer in children with DS, making it hard for them to take an active bite. There is a delay in the development of oral motor skills needed to eat solid food (Spender, Stein, Reilly, Percy, & Cave, 1996). The age at which solid food is introduced is also later than it is for the typical child. For instance, Hopman et al. (1998), reported that bread was often introduced around age 12 months (versus 8 months for typically developing children), pieces of hard fruit around 30 months (versus 12 months) and the first meal with meat, vegetables and/or starch around 24 months (versus 12 months). In addition, it has been shown that 45% of children with DS show selectivity by texture (Field et al., 2003) and that children with DS show less self-feeding between the ages of 11 and 38 months (Spender et al., 1996). It is estimated that 57% of children with DS have pharyngeal dysphagia (O'Neill & Richter, 2013). In addition, children with DS display behavioral problems during feeding more often than typically developing children. For instance, Bhatia, Kabra, and Sapra (2005) report that 55% of children aged between 2 and 6 years with DS showed behavioral problems as compared 12.5% in control group children. In addition, Lewis and Kritzinger (2004) estimated that around 30–40% of parents of a child with DS between the ages of 1 and 4 years report stress around feeding.
In order to diagnose a feeding problem, procedures such as physical examination and feeding observation are necessary (Arvedson, 2008). However, questionnaires that are aimed at the experiences of caregivers are important, because these informants offer a more ‘holistic’ view of the child's behavior as well as giving an impression of any caregiver stress that may have been experienced. For this reason, Ramsay, Martel, Porporino, and Zygmuntowicz (2011) developed the Montreal Children's Hospital Feeding Scale (MCH-FS), which consists of 14 questions and only takes a few minutes to administer and score. The MCH-FS measures parental concerns, family reactions, compensatory strategies, appetite, mealtime behaviors, oral sensory behavior, and oral motor behavior. The instrument, of which French, English, and Dutch versions have been validated, has been demonstrated to have a good sensitivity and specificity (Sanchez, Spittle, Allinson, & Morgan, 2015). In a previous study (Van Dijk, Timmerman, Martel, & Ramsay, 2011), we translated the MCH-FS into Dutch and established Dutch norms for the ages of 6 months to 4 years. The Dutch version is called the “Screeningslijst Eetgedrag Peuters” (SEP), literally translating to “Screening List Eating Behavior Toddlers”. The Dutch version distinguishes four norm groups based on age (6 months −1 years, 1–2 years; 2–3 years and 3–4 years). In a second study, which was on the concurrent validation of the instrument, we found significant moderate correlations between the total score on the SEP and infant behavior during a regular meal (the relative amount of bites, refusals and self-feeding; with correlation coefficients of −.43, .67 and −0.46, respectively) (see Van Dijk, Bruinsma, & Hauser, 2016). However, the sample of this study consisted of typically developing infants between the ages of 9 and 18 months who were all born prematurely. Further research is needed into both typically and non-typically developing children before the instrument can be used in clinical settings.
In the previous study, we examined the relation between caregiver-reported feeding problems (as measured on the SEP) and various types of feeding behavior. We included the ability of the infant to self-feed, the speed of feeding, meal duration, the child's food acceptance or refusal, the child's negative affect (whining, crying, and spitting out food) and the use of coaxing. These behaviors are considered symptomatic of feeding problems (Hofman-van den Hoogen, 1998; De Moor, Diddens, & Korzilius, 2007; Crist & Napier-Phillips, 2001, Piazza-Waggoner, Driscoll, Gilman, & Powers, 2008; Reau, Senturia, Lebailly, & Christoffel, 1996; Whelan & Cooper, 2000). The current study was a replication study of Van Dijk et al. (2016), this time with a sample of toddlers who have DS.
The aim was to investigate how toddlers with Down syndrome score on the SEP as reported by their parents, and whether similar correlations exist between behavior during a feeding interaction and the score on the screening instrument for this specific target group. For this reason, we used the same observational categories as in Van Dijk et al. (2016). We also included tongue protrusion for the DS sample, as there are indications that this hinders feeding efficiency and can lead to retching (Van den Engel-Hoek, 2006). Children with DS are one of the target groups for the MCH-FS/SEP, as they are prone to developing feeding problems and have regular pediatric check-ups, enabling early identification and referral. However, it is still unknown to what degree the results from the previous study can be generalized to the population of children with DS and can be used clinical practice with children with DS. For this reason, it is important to first investigate how scores on the instrument relate to feeding behavior of this group of children with DS. This study also addresses the empirical question of which mealtime behaviors relate to what caretakers of DS consider problematic feeding.
- 1.
Do caregivers of children with DS report more feeding problems on the SEP than parents of children from the general population?
- 2.
Does the score on the SEP correlate with the observed feeding skills (feeding efficiency, self-feeding, and tongue protrusion) and feeding interaction (food refusal, negative behavior of the infant, parental coaxing, and mealtime duration)?
Section snippets
Participants
A total of 32 children (23 boys and 9 girls) with Down syndrome participated in this study along with their primary caregivers. The families in question were recruited by undergraduate students from the Windesheim University of Applied Sciences, though their personal networks, the Dutch Foundation for Down Syndrome, social media, and speech language therapists. The families lived across the Netherlands. The inclusion criteria were that the child had DS, was between the ages of 1 and 3 years
Results
In total, 3 parents reported that their child had feeding problems, and a fourth child had just finished treatment for feeding problems. In 8 cases, caregivers reported that the meal was not fully representative of a regular meal. They reported minor deviations, such as “Usually, she eats more bread”, and “Usually, we have more people eating at the dinner table”. In one case, the parent thought the child did not feel too well and therefore ate less.
In total, 10 children did not self-feed at
Discussion
The results of this study showed that the scores on the SEP were similar to the same-aged children in the norm sample. In the current study, we used a statistical definition of feeding problems based on a normative sample and a questionnaire based on parental perceptions. This suggests that on average, parents of toddlers with DS do not experience more feeding problems than parents of typically developing toddlers. It may be speculated that these parents have different expectations regarding
Acknowledgements
We thank Lisa Tankink, Lisanne Teeuwsen, Carlijn te Selle, Marjon Meijering-Schuurman, Renske Brandenburg, and all parents and children for their efforts.
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