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How I use the evidence in dysphagia management (1):

Prepared, proactive and preventative

Infants and children with complex needs have a range of difficulties with early feeding, eating and drinking. Celia Harding and colleagues demonstrate how an evidence-based problem solving framework can support community and developing specialist therapists to provide appropriate intervention.
Shyamani, a band 7 speech and language therapist, has received support and supervision from one of the authors since moving to a new post 12 months ago. She has a caseload of preschool children who have complex needs, and works within acute (neonatal unit and childrens ward) and community settings. Previously, she worked with children who have learning disabilities and a range of eating and drinking difficulties within preschool and school settings. Shyamani moved post to develop her dysphagia skills, particularly within the acute context. During reflective sessions she felt overwhelmed with the nature of some of the difficulties, particularly with infants. peech and language therapists within the field of complex needs work with infants, children and young people who have a range of difficulties with early feeding, eating and drinking. Increasingly, however, therapists who have community preschool caseloads are referred infants with complex needs on discharge from a neonatal unit. They may also be involved in assessing infants who develop feeding problems in the first few days or weeks of life. The therapist in community settings may be the first healthcare professional to engage intensively with parents and carers, in an area that has potentially long-term serious health consequences. Of concern for many is how to identify risk indicators - such as aspiration from ingested contents - in relation to general eating and drinking management. In this article, we seek to provide a problemsolving framework through discussion of appropriate intervention and ways to support clinical confidence and competence of junior staff (community generalists or developing specialists) working in paediatric dysphagia. Our reflections cover three key areas: understanding the caseload, parental stress and its impact, and appropriate support. 1. CASELOAD Most children on a paediatric dysphagia caseload will have some level of learning disability. People with learning disabilities have a higher prevalence of poor nutritional intake, which may be due to oral phase problems or more specific neurological difficulties with eating (Mathisen et al., 2002). Speech and language therapists are likely to spend time developing strategies and providing training to minimise risk, as persistent eating and drinking difficulties within the learning disabled population lead to poor health outcomes and reduced quality of life. Ultimately, if there is no clear identification of the problems, and strategies are not implemented consistently, then outcomes are serious for the health of the child. Dysphagia is therefore a significant health risk issue and requires appropriate case history taking, management and intervention to reduce the adverse effects (Harding & Wright, 2010; Hendrix, 1993). Unmet health screening and general health checks remain a major issue for the learning disabled population. Research for the Disability Rights Commission Formal Investigation (2006) into health inequalities found that people with learning disabilities of all ages have a higher level of respiratory disease and are more likely than other citizens to have significant health risks and major health problems. Key clinical areas include infants and children with neurological disorders such as cerebral palsy or, less frequently, acquired difficulties such as traumatic brain injury


Celia Harding

or brain tumours. Infants and children with developmental delay (including those with Down syndrome) and children within the autistic spectrum often present with feeding, eating and drinking difficulties. There are also likely to be children with gastrointestinal problems, in particular gastroesophageal reflux, as well as smaller groups who have renal disease, heart conditions and anatomical anomalies that impact on nutritional intake. Being aware of key aspects of what the difficulties are likely to be can enable a therapist to make a timely and appropriate management plan: a) Children with physical disabilities Research indicates that dysphagia increases with the degree of physical disability, and that



people who have severe learning disabilities and cerebral palsy have a higher level of eating and drinking difficulties and risk associated with dysphagia (cited in Harding & Wright, 2010). A survey in two health authorities in London suggests that children who have cerebral palsy are likely to have sucking (57 per cent) and swallowing (38 per cent) difficulties, and that 90 per cent have an oral difficulty that impairs eating and drinking skills (Reilly et al., 1996). Sullivan et al. (2000) surveyed 377 parents of children aged 4 to 18 years with neurological impairment, 367 of them having challenging mother-child interaction during mealtimes (Mathisen et al., 2002). d) Children with other medical conditions Cardiopulmonary conditions, renal disorders and anatomical anomalies such as cleft palate are likely to impact on management. Cardiac problems are often associated with tiring, and therefore risk, over the period spent feeding. Children with renal disorders often have reduced interest in food, and therefore are at risk of food aversions (Hofner et al., 2000). Field et al. (2003) found that children with anatomical problems were more likely to have oral motor difficulties at the oral preparatory and oral phase of eating and drinking, plus food and texture aversions. Some children post- pharyngeal flap surgery associated with cleft palate develop conditioned dysphagia, in which they learn to avoid swallowing due to discomfort (Di Scipio & Kaslon,1982). 2. STRESS Having a child with a specific diagnosis or a learning difficulty especially one with associated health, physical and communication problems - is likely to cause a family significant stress. Parents may find themselves in a situation they had not anticipated; trying to understand the nature of the difficulty exposed, getting to grips with a range of appointments and professionals, or grieving for the child they thought they would have. While the increased psychological stress is particularly for mothers, feeding difficulties also cause significant stress for fathers (Sloper & Turner, 1993). Parents may have specific difficulties interacting and engaging with the child, and other care aspects such as mealtimes may take up a considerable amount of time and effort. Consequently, it may be an additional challenge for parents to undertake goals suggested by healthcare and education professionals. Research that targets specific disabilities yields additional and important information about parents. Parents who care for a child with cerebral palsy mention that their quality of life is reduced, and that undertaking the additional care aspects for a child with a disability impacts on the family health and maintenance of social-emotional networks. Additionally, while feeding is an important time for closeness and communication, this is not always possible due to the nature of the childs eating and drinking needs. Maintaining a stable and predictable routine is a challenge, especially if there are other siblings in the family and, overall, parents talk of feeling disempowered (Davis et al., 2009; Hewetson & Singh, 2009; Sleigh, 2005). In Sloper et al. (1991), families of children with Down syndrome felt their coping strategies were challenged and family relationships were strained. Mothers were particularly concerned with the child developing behavioural problems, although these concerns were less with mothers who had some employment responsibilities. A childs social competence and behaviour problems have a correlation with parental levels of stress (Dyson, 2003). Mothers who have learning difficulties themselves are at high risk of depression from social isolation (Feldman et al., 2002). 3. SUPPORT Parents generally value support from healthcare clinicians (Hewetson & Singh, 2009; Hoddinott & Pill, 2000; Sleigh 2005). However, it is useful to reflect on how we present information and set goals with parents. Davis et al. (2009) conducted a qualitative study with 37 parents of children with cerebral palsy. Reduced quality of life, difficulties in maintaining social networks and the childs long-term needs were key aspects. Parents feel they have to be proactive in seeking services and, when there is a difficulty, help is not forthcoming. This suggests therapists need to be forward planning in their management and intervention. This can only be implemented by knowing the key clinical indicators of the client group. Other issues with healthcare clinicians include arranging appointments, the number of appointments, little help during a crisis, feeling that information is not readily available and feeling demoralized and angry after consultations with professionals (Sleigh, 2005). Some parents feel information was not given in a timely way, or that there was conflict between

The therapist in community settings may be the first healthcare professional to engage intensively with parents and carers.
a diagnosis of cerebral palsy. Feeding, eating and drinking difficulties were a pervasive issue for most of the sample; 31 per cent had had a chest infection in the previous year, 89 per cent were not independent eaters and required some level of help during mealtimes, and 56 per cent choked on food. Twenty per cent reported that mealtimes were stressful, and 28 per cent reported spending around three hours per day feeding. b) Children with developmental delay Few surveys have evaluated the eating and drinking needs of children with developmental delay, but some suggest up to 80 per cent may have some degree of feeding difficulty. Children with Down syndrome are at higher risk of hypotonia at birth (Quartino, 2006), which predisposes them to have feeding problems early on. Field et al. (2003) reported that children with Down syndrome had particular difficulties with oral motor delay. This delayed the introduction of a wider range of textures and had a later impact on texture tolerance, resulting in food aversions. Children with autistic spectrum disorder may have issues with tolerating textures or with food refusal, but fewer specific difficulties with pharyngeal incompetence (Field et al., 2003). c) Children with a history of prematurity Children born prematurely, or those with developmental delay with an early history of severe reflux, can have difficulties establishing successful feeding (Bhatia & Parish, 2009; Douglas, 2002). Infants who have Gastroesophageal Reflux Disease (GORD) are likely to have lower energy intake, a significant increase in food refusal behaviours, be difficult and more demanding feeders and have

...parents said that clinicians too often observed them feeding the child, then offered joint problem solving. They would prefer clinicians to show, inform and suggest.
professionals wanting to move on to another goal versus parents not feeling quite confident or ready to progress. Loss of skills or a feeling of having reduced parenting abilities is also a theme (Hewetson & Singh, 2009; Hoddinott & Pill, 2000; Sleigh 2005). Parents were specific in the type of support they wanted; in particular parents said that clinicians too often observed them feeding the child, then offered joint problem solving. They would prefer clinicians to show, inform and suggest. Demonstrating hands-on skills rather than simply advising was more helpful in terms of developing and maintaining their own skills (Hewetson & Singh, 2009). One overall and rather worrying theme in the literature is of parents feeling they were not listened to.



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Figure 1 Shyamani uses the framework in practice Suleiman, a first child, was a term baby but has not been putting on weight. He is now three weeks old. His parents brought him into the Childrens Ambulatory Care Unit concerned about his failure to thrive. He was admitted to the childrens ward for a short period of observation. The medical team passed a nasogastric tube to assist Suleiman with weight gain. They noted he has significant difficulty in finishing his feeds. He also appeared to have reduced tone impacting on lip seal and cheek stability. His mother bottle feeds him, and has commented that Suleiman appears to become tired very quickly. Staff observed that he began with a normal pattern of sucking, but this became erratic half way through feeds. Further investigations revealed that Suleiman has a heart condition in conjunction with reflux. Shyamani structured her problem solving into the three key areas: 1. Prognostic indicators Shyamani has thought about the areas that will inform goal setting. Firstly, she knows that heart and reflux difficulties impact on the suck-swallowbreathe cycle in infant feeding. Secondly, she is aware there have been problems since birth, so potentially this could have an impact on bonding. Thirdly, Shyamani knows that tube feeding is likely to be an option alongside oral feeding for a time, and it is probable that Suleiman may need surgery, so intervention to reduce oral aversions is also going to be of vital importance 2. Parent stress Shyamani knows the parents will be stressed, especially as this is their first child. She reflects on what this means in terms of management: this could include being prepared for frequent and repetitious questions, repeated modelling of strategies and an increased need to offer reassurance. There are also likely to be questions about the long-term implications of nasogastric tube feeding, so discussion around reducing oral aversion is going to have to be planned. 3. Appropriate support Using information from the research, Shyamani has reflected on using a mixture of approaches involving commenting positively on the parents strategies for feeding and managing oral aversion, as well as using some specific modelling and demonstration. Shyamani also realises that parents want information they can access themselves and that they can discuss with the clinicians they meet during Suleimans hospital stay. Being able to apply research to practice within the multidisciplinary team ensures that Shyamani is an active and competent team member.

IN PRACTICE What information can we gain from the research to inform our practice? 1. Ensure dysphagia work is embedded within a multidisciplinary team, and that all intervention is done in collaboration with the team and carers. In addition, appreciate that assessment may be a lengthy and time consuming process, but that the benefits will be vital in determining the most appropriate course of action. 2. Be proactive and - where possible preventative, by understanding the main types of difficulties within clinical groups. This helps to minimise risk by ensuring necessary additional help such as tube feeding is delivered in a timely way. It also allows therapists to consider what the potential difficulties could be, and therefore recognise when to ask for a second opinion or refer on to another professional or tertiary level team. 3. Appreciate that caring for infants and children who have feeding / physical / learning difficulties will affect all aspects of a familys life, including their sense of normality, social networks, general quality of life and overall wellbeing. This will impact on how therapists and families engage with each other and on parents ability to take on board advice. 4. Provide information in a timely way so parents can engage fully with services. This might involve enabling parents to get in

touch by email or text with any questions, or making proactive telephone calls between appointments. 5. In terms of service delivery, consider how to build on parental knowledge and skills, and include opportunities to demonstrate strategies rather than just advising. Ensure goals are functional and have a meaningful rationale (for example, include an oral care programme during tooth-brushing time, rather than having a separate time for an oral stimulation programme). This may lead to an improved level of developing and evaluating goals in collaboration with parents and carers, which in turn will contribute to an improved quality of life and better outcomes. An example of how Shyamani used the method is in figure 1. She says, Although I had had experience with dysphagia in community settings, I found myself in a position where I had to think quickly and actually devise a programme of intervention from a very early stage. On top of this, I knew the parents were stressed, but I felt I was trying to manage the immediate issues with the stress and the feeding problem rather than being structured in my approach to problem solving...During supervision, I was helped to think about having a structure for managing my intervention. I have found this method invaluable in enabling me to think about intervention, as well as giving me confidence SLTP when working with parents.

Celia Harding (email is a senior lecturer at City University and a speech and language therapist at the Royal Free Hospital. Dr. Christina Smith is at University College, Kirsty Harrison and Dr Naomi Cocks at City University and Chetan Vyas at The Wellington Hospital, all in London.

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Bhatia, J. & Parish, A. (2009) GERD or not GERD: the fussy infant, Journal of Perinatology 29, pp.S7-S11. Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K. & Davern, M. (2009) The impact of caring for a child with cerebral palsy : quality of life for mothers and fathers, Child: Care, Health and Development 36(1), pp.63-73. Di Scipio, W.J. & Kaslon, K. (1982) Conditioned dysphagia in cleft palate children after pharyngeal flap surgery, Psychosom. Med. 44(3), pp.247-257. Douglas, J. (2002) Psychological Treatment of Food Refusal in Young Children, Child and Adolescent Mental Health 7(4), pp.173-180. DRC (2006) Equal Treatment: Closing the Gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and / or mental health problems. London: Disability Rights Commission. Dyson, L.L. (2003) Children with learning disability within the family context: a comparison with siblings in global selfconcept, academic self-perception and social competence, Learning Disabilities: Research and Practice 18(1), pp.1-9. Feldman, M., Varghese, J., Ramsay, J. & Rajska, D. (2002) Relationships between Social Support, Stress and MotherChild
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Interactions in Mothers with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities 15(4), pp.314-323. Field, D., Garland, M. & Williams, K. (2003) Correlates of specific childhood feeding problems, Journal Paediatric Child Health 39, pp.299-304. Harding, C. & Wright, J. (2010) Dysphagia: The challenge of managing eating and drinking difficulties in children and adults who have learning disabilities, Tizard Learning Disability Review 15(1). Hendrix, T.R. (1993) Art and science of history taking in the patient with difficulty swallowing, Dysphagia 8(2), pp.69-73. Hewetson, R. & Singh, S. (2009) The lived experience of mothers of children with chronic feeding and/or swallowing difficulties, Dysphagia 24(3), pp.322-332. Hoddinott, P. & Pill, R. (2000) A qualitative study of womens views about how health professionals communicate about infant feeding, Health Expectations 3, pp.224-233. Hofner, G., Behrens, R., Koch, A., Singer, H. & Hofbeck, M. (2000) Enteral nutritional support by percutaneous endoscopic gastrostomy in children with congenital heart disease, Paed. Cardiology 21(4) 341-6. Mathisen, B., Worrall, L., Masel, J., Wall, C. & Shepherd, R.W. (2002) Feeding problems in infants with gastro-oesophageal reflux
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disease: a controlled study, J Paediatr Child Health 35(2), pp.163-169. Quartino, A.R. (2006) Down syndrome specificity in health issues, in Rondal, J. & Perera, J. (eds.) Down syndrome: Neurobehavioural Specificity. Sussex, UK: John Wiley & Sons, pp.53-66. Reilly, S., Skuse, D. & Poblete, X. (1996) Prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy: A community survey, Journal of Pediatrics 129(6), pp.877-882. Sleigh, G. (2005) Mothers voice: a qualitative study on feeding children with cerebral palsy, Child: Care, Health and Development 31(4), pp.373-383. Sloper, P., Knussen, C., Turner, S. & Cunningham, C. (1991) Factors related to stress and satisfaction with life in families of children with Downs syndrome, Journal of Child Psychology and Psychiatry 32(4), pp.655-676. Sloper, P. & Turner, S. (1993) Risk and resistance factors in the adaptation of parents of children with severe physical disability, Journal of Child Psychology and Psychiatry 34(2), pp.167-188. Sullivan , P.B., Lambert, B., Rose, M., Ford-Adams, M., Johnson, A. & Griffiths, P. (2000) Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study, Dev Med Child Neurol 42(10), pp.674-680.


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