the right to eat: balancing risk, harnessing opportunities?€¦ · children’s hospital winnipeg...
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The Right to Eat: Balancing Risk, Harnessing Opportunities? Gina Rempel, MD, FRCPC Children’s Hospital Winnipeg Rehabilitation Centre for Children, Winnipeg [email protected] Cindy Dodds PT, PhD, PCS Medical University of South Carolina [email protected]
Marianne Gellert-Jones, MA, CCC-SLP HMS School for Children with Cerebral Palsy, Philadelphia, Pennsylvania [email protected] Barb Borton, MSc, OTM Rehabilitation Centre for Children, Winnipeg [email protected]
Disclosures: Gina Rempel has received an honourarium from Nestle Health Sciences & will not include practice recommendations & will address only evidence-based science in the presentation. The other authors have no commercial relationships relevant to the topic being presented. Outline: Families of children with feeding & swallowing problems related to underlying neurodisabilities like CP are increasingly choosing to feed their children orally even when there is a high risk of aspiration. This decision can place feeding team members at odds with each other & with individuals who are feeding the children in various settings because of differing views on the safety of oral feeding. Join therapists from different disciplines for an interactive discussion on aspiration & its risks, balancing those risks with good health & nutrition. Drawing on the literature on the ethics & quality of life considerations of oral feeding presenters will lead case discussions on critical elements that allow the incorporation of oral feeding into nutrition care plans for individuals with a variety of oral feeding skills. Participants will come away with an understanding of the importance of oral feeding as a life-enriching activity & how to make elements of oral feeding a reality for more children requiring enteral nutrition support. Objectives as related to children with CP with a variety of feeding competencies:
• Elucidate the risks of oral feeding in different care settings • Identify ways to mitigate some of the risks of aspiration • Articulate the importance of feeding training to foster participation in feeding
What is known about aspiration risk? For children with neurodisabilities like cerebral palsy (CP) aspiration risk is increased
o Aspiration during feeding can result in chronic lung disease but the characterization of the effects of aspiration is not always straightforward: It may not make you sick!
o Aspiration is likely an important risk factor for lung disease, however, in & of itself, it may not be become clinically relevant unless accompanied by other risk factors
How do we balance the risk of aspiration with quality of life?
o Modify mealtime environments & food consistency, viscosity and texture to match skills o Ensure optimal dental care o Eliminate smoke exposure o Include optimizing nutritional status in the care planning
What are important training elements for individuals feeding a child?
• Teach those involved in feeding in experiential ways: Explain, demonstrate, experience • Enhance processing & swallowing safety by supporting, pacing & positioning • Incorporate ethnocultural & selective eating patterns into care plans • Address value the shared sensory, emotional & social experience of families eating together • Look at feeding in the context of the whole child, family & child skill set, environment.
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Questions 1. Which of the following are important risk factors for aspiration?
a. Lack of self-feeding b. Dental caries c. Poor nutritional status d. a, b, c e. a & b
2. True or False Cessation of oral feeding & initiation of enteral nutrition has been demonstrated to decrease the risk of hospitalization and lower respiratory tract infections
3. Caregiver training should address a. Positioning of the individual b. Supportive maneuvers to facilitate mouth closure c. Matching food consistency & viscosity to the child’s skills d. Mouth care e. Pacing the meal to allow clearing of the mouth & safe swallowing f. All of the above
4. Important considerations for the development of feeding plans include all of the following:
a. Making the child fit the plan b. Child & parental values around feeding c. Decreasing choices about feeding to decrease risk d. Optimizing nutrition is the most important consideration e. All of the above
ANSWERS: 1:E, 2: False 3: F 4: B References
1. Weir K, McMahon S, Barry, L et al. Oropharyngeal Aspiration and Pneumonia in Children. Pediatric Pulmonology 2007; 42:1024-1031
2. Cass H, Wallis C, Ryan M, et al. Assessing pulmonary consequences of dysphagia in children with neurological disabilities: when to intervene? Dev Med Child Neurol 2005;
3. Arvedson JC. Feeding children with cerebral palsy and swallowing difficulties. European Journal of Clinical Nutrition 2013; 67:S9-12
4. Ferluga ED, Archer KR, Sathe NA, e al. Interventions for Feeding and Nutrition in Cerebral Palsy. Comparative Effectiveness Review No. 94, AGRQ Publication No. 13-EHC015-EF. Rockville MD: Agency for Healthcare Research and Quality. March 2013
5. McSweeney M, Kerr J, Amirault J, Mithel PD, Larson K, Rosen R. Oral feeding reduces hospitalization compared to gastrostomy feeding in children who aspirate. J Peds 3016; 17:79-84 http://dx.doi.org/10.1016/j.jpeds.2015.11.028
6. Snider L, Majnemer A, Darsaklis V. Feeding Interventions for Children with Cerebral Palsy: A Review of the Evidence. Physical & Occupational Therapy in Pediatrics 2011;31:58-77
7. Brady SL., Darragh M., Escobar NG., O’Neil K., Pape T, Rao N. Persons with disorders of consciousness: Are oral feedings safe/effective? Brain Injury 2006; 20:13-14, 1329-1334, DOI: 10.1080/02699050601111435
8. Cassens D, Johnson E, Keelan S. Enhancing taste, texture, appearance, & presentation of pureed food improved by resident quality-of-life and weight status. Nutr Rev 1996;54: S51–S54.
9. Harding C & Halai V. Providing Dysphagia Training for Carers of Children Who have Profound & Multiple Learning Disabilities, The British Journal of Development Disabilities 2009; 55:108, 33-47
10. Rempel, Gina. The Importance of Good Nutrition in Children with Cerebral Palsy. Phys Med Rehabil Clin N Am 2015 Feb;26(1):39-56
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HANDOUT
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2019 Nutrition Science and Clinical Practice The Right to Eat: Balancing Risk, Harnessing Opportunities Gina Rempel, MD, FRCPC Children’s Hospital Winnipeg & Rehabilitation Centre for Children, Winnipeg University of Manitoba, Canada [email protected] Cindy Dodds PT, PhD, PCS Medical University of South Carolina [email protected] Marianne Gellert-Jones, MA, CCC-SLP HMS School for Children with Cerebral Palsy, Philadelphia, Pennsylvania [email protected] Barb Borton, MSc, OTM Rehabilitation Centre for Children, Winnipeg [email protected] Outline: Families of children requiring enteral nutrition support due to feeding and swallowing problems are often choosing to feed their children orally even when there is a high risk of aspiration. This decision can place feeding team members at odds with each other and with individuals who are feeding the children in various settings because of differing views on the safety of oral feeding. Join therapists from different disciplines for an interactive discussion on aspiration and its risks, balancing those risks with good health and nutrition, and the evidence supporting caregiver training to enhance the safety of oral feeding. Drawing on the literature on the ethics and quality of life considerations of oral feeding for both adults and children with disabilities, presenters will lead case discussions on critical elements that allow the incorporation of oral feeding into nutrition care plans for individuals with a variety of oral feeding skills. Participants will come away with an understanding of the importance of oral feeding as a life-enriching activity and how to make elements of oral feeding a reality for more children requiring enteral nutrition support. Objectives:
• Elucidate the risks of oral feeding in different care settings • Identify ways to mitigate some of the risks of aspiration • Articulate the importance of feeding training in foster participation in feeding for children with a
variety of feeding competencies Evidence and References Eating together is an important human activity. It is how we celebrate, it is how we interact, and it is how we learn about our cultures and our heritage. Yet for many children with cerebral palsy (CP), especially those most severely impacted (who are at gross motor function classification scale (GMFCS) levels 4 and 5,) eating is not a participatory event. It is something that is “done” to them and something they have little influence over.1,2,3
1 Andrew MH, Parr JR, Sullivan PB. Feeding difficulties in children with cerebral palsy. Arch Dis Child Educ Pract Ed 2012; 97:222-229. Doi:10.1136/archdischild-20110300914 2 Arvedson JC. Feeding children with cerebral palsy and swallowing difficulties. European Journal of Clinical Nutrition 2013; 67: S9-12 3 Benfer K, Weir K, Bell KL, et al. Clinical signs suggestive of pharyngeal dysphagia in preschool children with cerebral palsy. Research in Developmental Disabilities 2015;192-201
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We would like to explore developing collaborative feeding plans and the important elements of risk management that will allow the participatory activity of feeding to happen happily and safely for children of GMFCS levels 4 and 5. Feeding activities can place those who are involved in the assessment and development of feeding plans at odds with other members of the medical team or with school or community programs because of safety concerns. However, there are techniques that will allay fears and give feeders more confidence in allowing children to participate in oral feeding/eating. With the appropriate information, we can be advocates of safe feeding plans and impart that information to others involved in the care and feeding of children with CP, whether that occurs by enteral or oral means, even if the intake orally is limited and participation in feeding is limited to social participation. The reason for the anxiety surrounding oral feeding for children with CP is related to the fear of aspiration. But we all know that feeding is much more than aspiration. Aspiration is not something that is in the forefront of our minds when we sit down to eat. We are beginning to understand that “aspiration,” like feeding itself, is multidimensional and “the characterization of the consequences of aspiration is not always straight forward.”4 We all have been taught that there is a causal relationship between aspiration and lower respiratory tract infection5, but in reality, we can only demonstrate an association between aspiration and lower respiratory tract infections. Many of us will know children who aspirate without any apparent negative respiratory consequences of aspiration.6,7,8 We also are aware that even if children do aspirate and demonstrate respiratory infections, parents may choose to continue to practice oral feeding/eating with their children. We do not want to be dismissive of aspiration or of lower respiratory tract infections in children with CP, as they are the leading cause of morbidity and mortality in this population.1,9 On the other hand, we want to stimulate thought regarding aspiration. Aspiration should not be the only consideration when it comes to seeking causes of lower respiratory tract infections in children with CP. We consider a significant, potentially life changing intervention like removing feeding from children who are at risk of the consequences of aspiration, however, we do not undertake the drastic intervention of removing children from their family homes if their parents smoke. Yet, smoke exposure, like aspiration during feeding, is a risk for pneumonia. (Smoke exposure likely increases your aspiration risk, due to desensitization of the airway from the constant presence of particulate matter. 10) In one study of adults with aspiration pneumonia, aspiration during swallowing was not an independent risk factor for aspiration pneumonia. The independent risk factors for aspiration pneumonia were: lack of self-feeding, smoking, bad teeth and multiple medical diagnoses. 11 These may be risk factors for children with CP, of which we should be mindful, as they are amenable to intervention.
4 Boesch RP, Daines D, Willging JP, et al. Advances in the diagnosis and management of chronic pulmonary aspiration in children. Eur Respir J 2006; 28:847-861 5 Weir K, McMahon S, Barry, L et al. Oropharyngeal Aspiration and Pneumonia in Children. Pediatric Pulmonology 2007; 42:1024-1031 6 Cass H, Wallis C, Ryan M, et al. Assessing pulmonary consequences of dysphagia in children with neurological disabilities: when to intervene? Dev Med Child Neurol 2005; 47:347-352 7Kaneoka A, Pisegna JM, Saito H, et al. A systematic review and meta-analysis of pneumonia associated with thin liquid vs thickened liquid intake in patients who aspirate. Clinical Rehabilitation 2017; 31:1116-1125 8 Rempel, G, Borton B, Esselmont E, Shelton C. Is aspiration more common in Canadian Indigenous Children. Pediatric Pulmonology 2011 Dec;46(12):1240-6. doi: 10.1002/ppul.21489 9 Thomson J, Ambroggio L, Stone B, et al. Aspiration and Non-Aspiration Pneumonia in Hospitalized Children with Neurologic Impairment. Pediatrics 2016; 137:146 DOI: 10. 1.1542/peds.2015-1612 10 Dua et al. Effect of chronic and acute cigarette smoking on the pharyngoglottal closure reflex. Gut 2002; 51:771-775 11 Langmore SE, Terpenning MS, Schork A, et al. Predictors of aspiration pneumonia: How important is dysphagia? Dysphagia 1998; 17:298-307
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Dealing with the many factors than can worsen the risk of pneumonia and not just the aspiration risks, is important in our care for children with CP (smoke exposure, dental caries, for example.) In fact, aspiration itself may only become clinically significant if the perfect storm occurs: if there is chronic inflammation from aspiration and then the child gets a viral illness or if other respiratory irritants act in concert with aspiration and a systemic illness. Aspiration is not to be dismissed, but in and of itself, aspiration may not cause respiratory illness without confounding factors.12 We do appreciate that aspiration does however, determine how we look at feeding: think of the Eating Drinking Ability Classification System (EDACS.) It is stratified by aspiration or the ability to make feeding “safe” including food processing and efficiency.13 But we can also map feeding in terms of participation using the WHO International Classification of Functioning, Disability and Health (ICF) (www.who.int/classifications/icf/en) so that participation can be emphasized and not just aspiration and efficient feeding.21
Dealing with aspiration is about mitigating risk. So, one needs to think about risk management when it comes to dealing with the development of feeding plans. Parents, children and young adults are opting to eat in the face of aspiration. 14 The same holds true for elderly people for whom oral feeding in the face of risk is becoming a major topic of discussion because non-oral feeding has more inherent risks than careful hand-feeding.15,16 Feeding interventions for children with feeding and swallowing dysfunction and aspiration are understudied and evidence for the success of the various interventions is lacking.17,18,19 Questions remain about strategies to manage aspiration risk. Improvement in nutritional status always underpins any feeding interventions. In addition, there are some strategies to teach parents and caregivers on how to approach feeding that may bear fruit and may help in developing feeding plans that all team members can stomach. Especially poignant are some of the articles looking at feeding in countries with resource challenges. They can demonstrate improvements in acceptance and participation for children with disabilities when basic feeding training is introduced.20,21 Aside from basic education about the children’s abilities and their underlying conditions, elements of feeding training include (but are not limited to) the following teaching points: 12 Weir K, McMahon S, Barry, L et al. Oropharyngeal Aspiration and Pneumonia in Children. Pediatric Pulmonology 2007; 42:1024-1031 13 Sellers D, Mandy A, Pennington L, et al. Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Dev Med Child Neurol 2014; 56: 245-251 14 Craig, GM. Psychosocial aspects of feeding children with neurodisability European Journal of Clinical Nutrition 2013; 67, S17–S20; doi:10.1038/ejcn.2013.226 15 Amarantos E., Martinez A., Dwyer J. Nutrition and Quality of Life in Older Adults Journals of Gerontology: The Gerontological Society of America 2001, Vol. 56A (Special Issue II):54–64 16 American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. J Am Geriatr Soc 2014; 62:1590-1593 17 Morgan AT, Dodrill P, Ward EC. Interventions for oropharyngeal dysphagia in children with neurological impairment. (Review). Cochrane Database of Systematic Reviews 2012, Issue 10. Art. No.: CD009456 18 Snider L, Majnemer A, Darsaklis V. Feeding Interventions for Children with Cerebral Palsy: A Review of the Evidence. Physical & Occupational Therapy in Pediatrics; 31:58-77 19 Ferluga ED, Archer KR, Sathe NA, e al. Interventions for Feeding and Nutrition in Cerebral Palsy. Comparative Effectiveness Review No. 94, AGRQ Publication No. 13-EHC015-EF. Rockville MD: Agency for Healthcare Research and Quality. March 2013 20 Adams MS, Khan NZ, Begum SL et al. Feeding difficulties in children with cerebral palsy: low cost caregiver training in Dhaka, Bangladesh. Child: care, health and development 2011;38:878-888; doi:10.1111/j.13652214.2011.01327.x 21 Hettiarachchi S, Kitnasamy G. Effect of Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour During Mealtimes. Disability CBR Inclusive Development 2013; 24:75-97; doi.10.5463/DCID.v2413.73
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o Positioning o Bolus size, consistency and viscosity o Allowing increased time to swallow/eat o Pacing the meal o Watching for fatigue, especially if mealtimes are prolonged o Decreasing high bacterial burden in the mouth o Eliminating smoke exposure
The goal for teaching feeding strategies and of mitigating the risks for oral feeding is fostering participation in the meaningful life activity of eating and this should be an essential intervention goal.22 An annotated reading list of articles regarding participation in feeding, mitigating risk and caregiver training follows: Articles on Swallowing Dysfunction and Aspiration Andrew MH, Parr JR, Sullivan PB. Feeding difficulties in children with cerebral palsy. Arch Dis Child Educ Pract Ed 2012; 97:222-229. Doi:10.1136/archdischild-20110300914
• Review article describing feeding difficulties, assessment, intervention strategies including sensorimotor and surgical options to improve nutrition
• Evidence for intervention is limited. Arvedson JC. Feeding children with cerebral palsy and swallowing difficulties. European Journal of Clinical Nutrition 2013; 67:S9-12
• Swallowing problems increase the RISK of pulmonary consequences • Risk of aspiration partly dependent on the condition of the child • Risk of aspiration can decrease with time as developmental gains are made • Aspiration risk may increase at times
o Increased risk with uncontrolled seizures o Fatigue
• The more severe the motor deficits the more severe the swallowing dysfunction however, even children with mild motor deficits can have dysphagia
• Efficacy of interventions reviewed. Evidence overall for interventions is poor. o Positioning (limited evidence) o Bolus size o Bolus consistency/viscosity (limited evidence) o Increased time to swallow/eat o Importance of pacing the meal o Watching for fatigue if mealtimes are prolonged o Neuroelectrical stimulation (insufficient evidence in one trial, no improvement over oro-
motor therapy in another) • There is an expectation that at least pleasurable amounts of food are given to all children
regardless of skill level. Some oral feeding that is physiological, that fits the social situation that maintains or improves the overall health, hydration and nutritional status, and the pulmonary status in particular. All children deserve opportunities for oral feeding
Benfer K, Weir K, Bell KL, et al. Clinical signs suggestive of pharyngeal dysphagia in preschool children with cerebral palsy. Research in Developmental Disabilities 2015;192-201
• Sixteen signs of aspiration evaluated. Stratified by GMFCS.
22 Imms C, Granlund M, Wilson PH, et al. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol 2017; 59:16-26
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• 68% children had clinical signs of aspiration and this increased with declining gross motor function
• Parents reported clinical signs in 46% of children • Most common signs on direct assessment were coughing, multiple swallows, gurgly voice, wet
breathing and gagging • 38% of children with typical development had signs of dysphagia mostly observed on fluids • Coughing may not prognosticate aspiration • Sequelae and prognosis in children with CP are poorly understood • Parental report agreed with clinical assessment in 60% of cases. Single cough with thin liquids
is also common in typical children age 18-36 months Boesch RP, Daines D, Willging JP, et al. Advances in the diagnosis and management of chronic pulmonary aspiration in children. Eur Respir J 2006;28:847-861
• Chronic pulmonary aspiration in children is an important cause of recurrent pneumonia, progressive lung injury, respiratory disability and death.
• There is no gold-standard test for aspiration. Although new techniques have been introduced since the 1990s and significant advances in the understanding of dysphagia and gastro-oesophageal reflux have been made, characterisation of the aspirating child remains elusive
Cass H, Wallis C, Ryan M, et al. Assessing pulmonary consequences of dysphagia in children with neurological disabilities: when to intervene? Dev Med Child Neurol 2005;47:347-352
• Two central questions: is feeding safe and is it adequate? We can usually figure out if aspiration is occurring but quantifying it and predicting the long term impacts on lung function is more difficult
• The authors present two cases with divergent outcomes • The characterisation of aspiration and its significance is difficult
Kim JS, Han ZA, Song KH, et al. Characteristics of dysphagia in children with cerebral palsy related to gross motor function. Am J Phys Med Rehabil 2013l92:912-919
• Characteristics of dysphagia in children with CP related to motor function. • VFSS signs were significantly more common in the severe groups (GMFCS 4&5) • Dysphagia is closely related to GMFCS • Silent aspiration observed in children with GMFCS levels 4-5
Langmore SE, Terpenning MS, Schork A, et al. Predictors of aspiration pneumonia: How important is dysphagia? Dysphagia 1998;17:298-307
• Reviews independent variables associated with aspiration pneumonia which are: o Dependent feeding is the main risk factor o Smoking o Dependent for mouth care and cavities o Multiple medical diagnosis
• Aspiration during feeding in this study was not one of the main risk factors for aspiration, suggesting that while it is an important contributor, it is not the only
• factor that impacts whether or not aspiration will be significant Tutor JK, Gosa MM. Dysphagia and Aspiration in Children. Pediatr Pulmonol 2012; 47:321-337 DOI 10.1002/ppul.21576
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• Discusses swallowing function in detail and the evaluation of aspiration and dysphagia • Management of different aspects of aspiration is discussed
Articles on Pneumonia – Consequences of Aspiration Kaneoka A, Pisegna JM, Saito H, et al. A systematic review and meta-analysis of pneumonia associated with thin liquid vs thickened liquid intake in patient who aspirate. Clinical Rehabilitation 2017;31:1116-1125
• Drinking thin liquids with safety strategies does not increase the risk of pneumonia compared to offering thickened liquids to patients who aspirate
• This result is only generalizable to patients at low risk of pneumonia • People with poor cognitive status, acute and chronic respiratory illness, gastroesophageal
reflux, tooth decay, nasogastric tube placement and tracheostomy were often excluded from the studies
Rempel, G, Borton B, Esselmont E, Shelton C. Is aspiration more common in Canadian Indigenous Children. Pediatric Pulmonology 2011 Dec;46(12):1240-6. doi: 10.1002/ppul.21489
• Several risk factors required for aspiration to reach clinical significance • Biological and environmental factors may play significant roles in determining the clinical
outcomes of aspiration
Thomson J, Ambroggio L, Stone B, et al. Aspiration and Non-aspiration Pneumonia in Hospitalized Children with Neurologic Impairment. Pediatrics 2016;137-146 DOI: 10.1.1542/peds.2015-1612
• 9.7% of children diagnosed with aspiration pneumonia experienced more complications than children with non-aspiration pneumonia
• Children with aspiration pneumonia had longer length of stay, transfers to ICU, greater hospital costs and more re-admissions
• Diagnosis of aspiration pneumonia is somewhat subjective. This study is based on Pediatric Health Information System database
Weir K, McMahan S, Barry, L et al. Oropharyngeal Aspiration and Pneumonia in Children. Pediatric Pulmonology 2007; 42:1024-1031
• Oropharyngeal aspiration is known to be associated with aspiration and direct causality is often assumed
• Children with multisystem involvement demonstrate a higher association of pneumonia • Impact of oropharyngeal aspiration on development of pneumonia is considerably reduced
once other factors in children with multisystem involvement are taken into account • Aspiration of food or liquids may have less of a direct causality on children than previously
thought • Aspiration may be an important risk factor for pneumonia but in the absence of other
risk factors is rarely sufficient to cause pneumonia
Articles on Classifications Systems for Children with CP Lefton-Greif MA, Arvedson JC. Pediatric Feeding and Swallowing Disorder: State of Health, Population Trends, and Application of the International Classification of Functioning Disability, and Health. Semin Speech Lang 2007;28:161-165. DOI 10.1055/s-2007-984722
• Describes the use of ICF for the description of feeding problems in children.
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Paulson A, Vargus-Adams J. Overview of Four Functional Classifications Systems Commonly Used in Cerebral Palsy. Children 2017;4:30; doi:10.3390/children4040030
• Describes four functional classifications systems for cerebral palsy: GMFCS, MACS, CFCS (communication), EDACS (eating and drinking)
Sellers D, Mandy A, Pennington L, et al. Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Dev Med Child Neurol 2014; 56: 245-251 EDACS: Valid measure to assess eating & drinking ability for children with CP ≥ 3 years. Stratifies by efficiency and aspiration and adds in “independent”, “needs assistance” and “totally dependent”
• Level 1: can eat & drink safely and efficiently no different from peers • Level 2: eats & drinks safely, may have some limitations in terms of food loss & generally
require more time to complete a meal than peer • Level 3: Eats & drinks with limitations of safety & efficiency. Hard lumps may be difficult &
aspiration may be a risk. Usually eats pureed or mashed foods. Cough may be seen with fast flowing liquid
• Level 4: Significant limitation with safety, however, the risk of aspiration can be managed & oral feeding is possible
• Level 5: Unable to eat or drink safely Articles on Intervention for Swallowing Dysfunction Ferluga ED, Archer KR, Sathe NA, e al. Interventions for Feeding and Nutrition in Cerebral Palsy. Comparative Effectiveness Review No. 94, AGRQ Publication No. 13-EHC015-EF. Rockville MD: Agency for Healthcare Research and Quality. March 2013.
• Reviewed studies providing effectiveness data for feeding interventions in people of all ages with CP. Conflicting results on sensorimotor interventions. Some studies suggest that interventions such as oral appliances may enhance oral skills but there is a clear need for rigorous, comparative studies. Evidence for surgical interventions is insufficient to low. Weight gain is demonstrated
Ferluga ED, Sathe NA, Krishnaswami S, McPheeters M. Surgical intervention for feeding and nutrition difficulties in cerebral palsy: a systematic review. Dev Med Child Neurol 2014;56:31-43
• Systematic review of outcomes of GT. In the introduction they review that chronic pulmonary disease “related to aspiration” is the leading cause of death in children with CP
• Children gain weight but other results mixed • Complications were site infection, granulation tissue in 30-40% of children • Death rates 7-29% though this was likely not related to surgery • Evidence for effectiveness of surgical interventions is insufficient to low • The risk of intervention with GT in relation to the risk of not treating is poorly understood
McCurtin A, Healy C, Kelly K, et al. Plugging the patient evidence gap: what patient with swallowing disorder post-stroke say about thickened liquids. Int J Lang Commun Disord 2017;00:0:1-10; doi: 10.1111/1460-6984.12324 Thickening liquids is an established bolus modification intervention, however
• Patients disliked the thickened liquid impacting acceptance, hydration and quality of life • There continues to be a lack of robust empirical evidence to support the therapeutic benefits of
thickening • Suggest adding techniques such as carbonation, positioning, flavor enhancement, unlimited
water protocols between meals • Develop a broader approach to managing aspiration
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McSweeney M, Kerr J, Amirault J, Mithel PD, Larson K, Rosen R. Oral feeding reduces hospitalization compared to gastrostomy feeding in children who aspirate. J Peds 3016; 17:79-84 http://dx.doi.org/10.1016/j.jpeds.2015.11.028
• Children with aspiration who are fed orally with techniques such as thickening fluids to decrease the risk of aspiration, have a decreased risk of being hospitalized than children who have gastrostomy tubes placed to manage the aspiration
Morgan AT, Dodrill P, Ward EC. Interventions for oropharyngeal dysphagia in children with neurological impairment. (Review). Cochrane Database of Systematic Reviews 2012, Issue 10. Art. No.: CD009456
• There is currently not enough high-quality evidence from randomized controlled trials or quasi-randomised controlled trial for any particular type of oropharyngeal dysphagia intervention in this population of children.
Snider L, Majnemer A, Darsaklis V. Feeding Interventions for Children with Cerebral Palsy: A Review of the Evidence. Physical & Occupational Therapy in Pediatrics 2011;31:58-77 Feeding intervention demonstrates potential benefits for children with cerebral palsy but current level of evidence is poor and empirical data are lacking.
• Sensorimotor activities show not definite improvement in feeding • Positioning: limited evidence that positioning has positive impact on feeding safety, efficiency,
decreasing aspiration risk • Changing consistency/viscosity: limited evidence demonstrating softer food consistencies
enhance feeding safety and efficiency • Oral implanted devices: Moderate level of efficacy
Articles on Participation Imms C, Granlund M, Wilson PH, et al. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol 2017;59:16-26
• Participation in meaningful life activities should be an essential intervention goal. Develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges and their families, everywhere.
• Participation means involvement in a life situation. ICF-CY provides a very strong foundation for understanding body structure and function of individuals and the relationship between having a health condition and body structure and function outcomes. Within in the activity and participation domains of the ICF-CY less is understood about the processes that define the constructs. More importantly very little is known about the transactions among ICF-CY domains and this knowledge gap greatly limits our capacity to design more effective interventions.
• Participation is a complex multidimensional construct that is not a “downstream effect: of rehabilitation at the body function and structure or activity level. This change in thinking involves challenging the view that participation restriction can be solved only by addressing environmental barriers Intervention at the level of the body: or the level of society may be necessary to promote participation in individuals but neither alone is likely to be sufficient
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Articles on the Ethics of Oral Feeding Amarantos E., Martinez A., Dwyer J. Nutrition and Quality of Life in Older Adults Journals of Gerontology: The Gerontological Society of America 2001, Vol. 56A (Special Issue II):54–64. Brady SL., Darragh M., Escobar NG., O’Neil K., Pape T, Rao N. Persons with disorders of consciousness: Are oral feedings safe/effective? Brain Injury 2006; 20:13-14, 1329-1334, DOI: 10.1080/02699050601111435 To link
• Individuals with severe brain injury with disorders of consciousness • Oral feeding during coma recovery did not negatively affect safety or cost and may enhance
quality of life for individuals and families. Cassens D, Johnson E, Keelan S. Enhancing taste, texture, appearance, and presentation of pureed food improved by resident quality-of-life and weight status. Nutr Rev 1996;54: S51–S54.
• Nutritional status (dietary, anthropometric, biochemical) • Nutritional status information does not capture sensory, psychological, and social aspects of
food and eating that may also be important to the individual • Measures of nutrition do not address quality of life • “Food and nutrition are essential components of ‘the good life’.” • Mealtimes provide a “sense of security, meaning, order, and structure to an individual’s day;
imbue that person with feelings of independence, control, and sense of mastery over his or her environment; and provide opportunities for making food choices.”
• Increase social interactions • Conceptual model of the nutritional dimensions of feeding/mealtime is needed.
Craig, GM. Psychosocial aspects of feeding children with neurodisability European Journal of Clinical Nutrition 2013; 67, S17–S20; doi:10.1038/ejcn.2013.226
• Per parental report, tube feeding interferes with family mealtime where conversation and participation in family life occur
• Parents may need advice on how to manage tube feeding in the context of the family meal. Patrick, D. L. and Y. P. Chiang. "Measurement of health outcomes in treatment effectiveness evaluations: conceptual and methodological challenges." Med Care 38;(9 Suppl) 2000: II14-25.
• Quality of life conceptual model
Articles on Training Programs for Feeding Adams MS, Khan NZ, Begum SL et al. Feeding difficulties in children with cerebral palsy: low cost caregiver training in Dhaka, Bangladesh. Child: care, health and development 2011;38:878-888; doi:10.1111/j.13652214.2011.01327.x
• In resource poor countries, advanced interventions and technological solutions for feeding difficulties are not available. In situations of poverty, problems are exacerbated by factors such as lack of resources to buy food, limited time and facilities for cooking nutritious food, limited time and facilities for cooking special recipes and lack of access to rehabilitation and health services
• Care-provider training for children with feeding difficulties showed significant improvements in the children with CP in respiratory health (p<0.005), cooperation at meals (p<0.003), overall mood (p=0.001) and caregiver stress (p<0.001). No consistent improvement in growth compared to unaffected peers
• In situations of poverty, compliance is restricted by lack of education, finances and time. Care-providers with minimal formal education, living in conditions of extreme poverty are able to
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change feeding practices after a short low-cost training intervention, with positive consequences
• Interventions not related to increasing caloric intake: Adapt food consistency, adapt feeding method with appropriate position, foster jaw stability, Foster self-feeding (6 sessions)
• Significant improvements in the child’s health and caregiver stress with feeding training Arslan SS, Demir N, Karaduman AA. Effect of a new treatment protocol called Functional Chewing Training on chewing function in children with cerebral palsy: double-blind randomized controlled trial. Journal of Oral Rehabil 2017;44:43-50
• Holistic approach to improve chewing function by providing postural alignment, sensory and motor training and food and environmental adjustments
o Positioning for safe feeding o Placing food on molars o Sensory stimulation of gums and teeth o Chewing exercises with chewing tubes o Grading of food consistency (increasing as tolerated)
• 80 children, 3.5 years in randomized controlled trial with children receiving traditional oro-motor exercises for 12 weeks
• Children with the chewing training improved on a chewing scale developed by one of the authors compared to controls and on the Behavioural Pediatric Feeding Assessment
Bailey RL, Stoner JB, Angell ME, Fetzer A. School-based Speech-Language Pathologists’ Perspectives on Dysphagia Management in Schools. LSHSS 2008;39:441-450 DOI
• Qualitative research design surveying SLPs in school and focus groups • SLPs felt ill prepared to deal with dysphagia management in school settings • Concern about working in isolation without appropriate supports and equipment • Primary concern is aspiration and despite SLPs background, they felt ill prepared to manage
individualized school feeding programs • Requested written protocols and support from school administration to be able to learn skills
before offering services Burton S., Failli R., George B., Phillips, K. Zentgraf K. Educationally Relevant Decisions for safe mealtime participation: a framework for decisions and collaboration. American Occupational Therapy Association Annual Conference 2014.
• Mealtime participation • Opportunities for mealtime participation • Mealtime development • Barriers and facilitators to mealtime • Clinical reasoning decision making flow charts for feeding/mealtime
Cichero, J. A., Lam, P., Steele, C. M., Hanson, B., Chen, J., Dantas, R. O., et al. Development of International Terminology and Definitions for Texture-Modified Foods and Thickened Fluids Used in Dysphagia Management: The IDDSI Framework. Dysphagia, 2016, 32(2), 293-314. doi:10.1007/s00455-016-9758-y
• Describing the development of a consistent system to describe food texture and liquid viscosity Cowpe (Jebson) E, Hanson B, Smith CH. What do parents of children with dysphagia think about their Multi-Disciplinary Team (MDT)? A qualitative study. BMJ Open. 2014; 4(10): e005934. Published online 2014 Oct 17. doi: 10.1136/bmjopen-2014-005934 PMCID: PMC4202020, PMID: 25326210
14
• Anecdotal information, quotes & survey from parents regarding their relationship & inclusion as a member of their child’s Multi-Disciplinary Team (MDT)
• There is evidence that suggests a significant mismatch between the families and the team and thus barriers to training the families to improve success of the child with feeding needs
• Barriers identified include access to services, professional knowledge & skillsets • Emotional reactions, decision-making & treatment planning were barriers to effective treatment • All parents involved expressed interest in having a place at the table as part of the MDT when
it involved their child’s feeding/dysphagia • Failure to not include parents in this way was seen by the families as impacting care and in
turn the health of their children
Harding C & Halai V. Providing Dysphagia Training for Carers of Children Who have Profound and Multiple Learning Disabilities, The British Journal of Development Disabilities 2009; 55:108, 33-47, DOI: 10.1179/096979509799103188
• Study examining the training of Carers, described as a group of highly experienced educational practitioners
• Goals for Carers regarding feeding needed to be more clear in terms of expectations • Results indicated that Carers did best implementing feeding protocols when they observe
feeding, followed models of the therapeutic team, engage in experience and practice with materials that improve feeding for the child, and had frequent follow-up
• A determination was made that in addition the area of communication within the context of the mealtime setting needs to be examined further, both in terms of clear and logical feeding plans and communication within the meal with the child
Hettiarachchi S, Kitnasamy G. Effect of Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour During Mealtimes. Disability CBR Inclusive Development 2013;24:75-97; doi.10.5463/DCID.v2413.73
• Study of the knowledge of Sri Lankan mothers feeding children with cerebral palsy • Limited knowledge of feeding children with disability affects mothers of children with cerebral
palsy. Workshops to increase carers’ knowledge and confidence also decreases their anxiety and adherence to recommendations
• Experiential training for caregiver is important to ensure the children are fed safely Malandraki GA, Rajappa K, Kantarcigil C, et al. The Intensive Dysphagia Rehabilitation Approach Applied to Patients with Neurogenic Dysphagia: A case series design study. Arch of Phys Med Rehab 2016;97:567-74 http://dx.doi.org/10.1016/j.apmr.2015.11.019
• Small adult study, outpatient • 2 sessions per week plus home program with education of carers • Oropharyngeal exercises, swallowing routine and caregiver participation • Improvements seen in objective measures of swallowing safety and of lingual strength • All but one patient (who had a progressive illness) improved in their oral intake, several
weaning off their enteral support Meresman S, Drake L. Are School Feeding Programs Prepared to be Inclusive of Children with Disabilities? Frontiers in Public Health 2016;4:1-4. DOI: 10.3389/fpubh.2016.00045
• Children with disabilities more likely to be out of school than any other group of children • Inadequate infrastructure to allow full participation in school is a challenge for educational
services and eating at school • Nutritional needs of children with disabilities are rarely considered when developing school
feeding programs
15
• Inclusiveness assessments suggested to allow all children to participate in school feeding/eating programs
Mueller MM, Piazza CC, Moore JW et al. Training Parents to Implement Pediatric Feeding Protocols, Journal of Applied Behavior Analysis 2003, 36, 545–562
• This study explores the differences between providing only written support to families during the training for feeding protocols versus the implementation of role-playing, observation and scripting within an ABA feeding therapy framework
• Children whose families received enhanced multi-dimensional training demonstrated improved acquisition of feeding skills over time than those who only received written materials
• It should be of note that many children engaged in dysphagia/feeding therapy have protocols included within their program to help decrease the learned behaviors that surround negative feeding experiences
Articles about the importance of nutrition in children with CP
• Brooks J, Day S, Shavell R, et al. Low weight morbidity & mortality in children with cerebral palsy: new clinical growth charts. Pediatrics 2011; 128:e299-307. http://dx.doi.org/10.1542/peds.2010-2801
• Rempel, Gina. The Importance of Good Nutrition in Children with Cerebral Palsy. Phys Med Rehabil Clin N Am 2015 Feb;26(1):39-56. doi: 10.1016/j.pmr.2014.09.001. Review. PMID:25479778
• Stevenson R, Hayes R, Cater L, et al. Clinical correlates of linear growth in children with cerebral palsy. Dev Med Child Neurol 1994;36:135-42
• Stevenson RD, Conaway M, Chumlea WC, et al. Growth & health in children with moderate-to-severe cerebral palsy. Pediatrics 2006;118:1010-8
• Sullivan PB, Alder N, Bachlet AM et al. Gastrostomy feeding in cerebral palsy: too much of a good thing? Dev Med Child Neurol 2006;48:877-82
The Right to Eat
Balancing Risk, Harnessing Opportunities
Presenters
Cindy Dodds, PT, PhD, [email protected]
Gina Rempel, MD, [email protected]
Marianne Gellert-Jones, MA, [email protected]
Barb Borton, MSc, [email protected]
FINANCIAL DISCLOSURE
Disclosure of Relevant Financial Relationships
Gina Rempel has received an honorarium from Nestle Health Sciences
Cindy Dodds, Barb Borton and Marianne Gellert-Jones have no financial relationships to disclose
We will not discuss off label use and/or investigational use in our presentation
Learn
Communicate
Socialize
Google Art
CelebrateMost of us view
eating as Life enriching activity
Objectives
To articulate the ethics and quality of life implications for participating in eating
To identify risks or oral feeding and ways to mitigate some aspiration challenges
To articulate the importance of feeding training in fostering participation in feeding for children with variety of feeding competencies
Session Flow
Cindy Dodds: It’s more than meets the mouth 15 minutes Quality of Life and the Right
to Eat
Gina Rempel:Does feeding fit? 20 minutes
Delving Deeper: Putting your best mouth
forward
Marianne Gellert-Jones: Ready to Eat: Caregiver training improves swallowing safety 20 minutes
Techniques to improve
participation in feeding
20 minutesDiscussion
Barb Borton: Looking at cases to develop combined enteral oral nutrition care plans 15 minutes
Balancing risk of Aspiration/
Health & Nutrition
Participation, Quality of Life, and Ethics?
(2011 Movie: The Intouchables)
Video
Is this the case for children with medical complexity?
Decisional Conflict and ResolutionConcerning Gastrostomy Tube Intervention• Context of child and family
• Struggle between value in eating and potential loss with g-tube
• Process of Care• Knowledge and Information
• Support
(Mahant, Cohen, Nelson, Rosenbaum 2018; Mahant, Jovcevska, Cohen 2006; Adams, Elias 2014) (Mahant, Cohen, Nelson, Rosenbaum 2018;
Videos Quality of Life Conceptual Model
(Patrick, Chiang 2000; Dodds, Rempel 2016)
Related Evidence
Brady et al. 2006: Persons with disorders of consciousness: Are oral feedings safe/effective?
• Individuals with severe brain injury with disorders of consciousness
• Oral feeding during coma recovery did not negatively affect safety or cost and may enhance quality of life for individuals and families.
Craig, GM. 2013: Psychosocial aspects of feeding children with neurodisability
• Per parental report, tube feeding interferes with family mealtime where conversation and participation in family life occur
• Parents may need advice on how to manage tube feeding in the context of the family meal.
Cassens et al. 1996: Enhancing taste, texture, appearance, and presentation of pureed food improved by resident quality-of-life and weight status Amarantos et al. 2001: Nutrition and Quality of Life in Older Adults Journals of Gerontology
• Dietary, anthropometric, biochemical information does not capture• Sensory
• Psychological
• Social aspects of food and eating
• Measures of nutrition do not address quality of life
Cassens et al. 1996: Enhancing taste, texture, appearance, and presentation of pureed food improved by resident quality-of-life and weight status Amarantos et al. 2001: Nutrition and Quality of Life in Older Adults Journals of Gerontology
• “Food and nutrition are essential components of ‘the good life’.”
• Mealtimes provide a “sense of security, meaning, order, and structure to an individual’s day; imbue that person with feelings of independence,control, and sense of mastery over his or her environment; and provide opportunities for making food choices.”
Consider How Feeding is Addressed in Available QOL/HRQL Outcomes
Caregiver Priorities and Child Health Index of Life with Disabilities
Assessment of Caregiver Experience with Neuromuscular Disease
So if we view eating as life enriching
Let’s explore the barriers and fear of eating so they can be addressed
The main factor in our decisions about oral feeding and our anxiety in feeding children with varying skill sets
ASPIRATION
Sellers D, Mandy A, Pennington L, et al. Development & reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Dev Med Child Neurol 2014; 56
Yet
When most of us think about feeding/eating, we are not considering aspiration, nutritional content of every bite or whether or not there will be negative consequences
Our focus is usually on the socialization at the table, the taste and texture and the feeling of satiety after the meal…
So how can we integrate these elements of feeding into the feeding plans of the children whose care we participate in
EATING IS MORE THAN ASPIRATION
• Aspiration does not always have long term negative consequences
• Aspiration and respiratoryillness: causal relationship or association?
Cass H et al. Assessing pulmonary consequences of dysphagia in children with neurological disabilities: when to intervene? Dev Med Child Neurol 2005; 47:347-352
Kaneoka A et al. A systematic review and meta-analysis of pneumonia associated with thin liquid vs thickened liquid intake in patients who aspirate. Clinical Rehabilitation 2017; 31:1116-1125
Weir K et al. Oropharyngeal Aspiration and Pneumonia in Children. Pediatric Pulmonology 2007; 42:1024-1031
ASPIRATION IS COMPLEX:
determining its significance is challenging
• The characterization of the consequences of aspiration is not always straightforward
• Aspiration is an important risk factor for pneumonia but in and of itself may not be significant enough to result in negative consequences
• Boesch RP et al. Advances in the diagnosis & management of chronic pulmonary aspiration in children. Eur Respir J 2006; 28:847-861
• Cass H et al. Assessing pulmonary consequences of dysphagia in children with neurologicaldisabilities: when to intervene? Dev Med Child Neurol 2005; 47:347-352
• Kaneoka A et al. A systematic review and meta-analysis of pneumonia associated with thin liquid vs thickened liquid intake in patients who aspirate. Clinical Rehabilitation 2017; 31:1116-1125
• Weir K et al. Oropharyngeal Aspiration and Pneumonia in Children. Pediatric Pulmonology 2007; 42:1024-1031
ASPIRATION IS COMPLEX:
determining its significance is challenging
• Despite risks, oral feeding associated with fewer hospitalizations compared to GT feeding
• Respiratory illnesses were the same in both groups
• Careful handfeeding as safe as tube feeding in some adult settings
• McSweeney M, Kerr J, Amirault J, Mithel PD, Larson K, Rosen R. Oral feeding reduceshospitalization compared to gastrostomy feeding in children who aspirate. J Peds 2016;170:79-84
• DiBartolo MC. Careful handfeeding a reasonable alternative to PEG placement in individuals with dementia. J Gerontol Nursing 2006;32:25-33
IS ASPIRATION AN
INDEPENDENT RISK FACTOR
FOR PNEUMONIA?
• Lack of self feeding• Smoking• Dental caries• Multiple illness
Langmore SE, Terpenning MS, Schork A, et al. Predictors of aspiration pneumonia: How important is dysphagia? Dysphagia 1998; 17:298-307
Rempel, G, Borton B, Esselmont E, Shelton C. Is aspiration more common in Canadian Indigenous Children. Pediatric Pulmonology 2011 Dec;46(12):1240-6
IS ASPIRATION EVER SEEN IN
TYPICAL INDIVIDUALS?
• 220 adults with no organic pharyngeal or esophageal disease:
• 38% some abnormalities in swallowing stages
• 28% penetrated the airway• 8% aspirated!
Barbiera et al. Radiol Med 2002;104P125-133
Colombo & Hallberg. Editorial, Ped Pulmol 2012;47:317-320
So
Use investigations with caution
Interrogate the study results to get solutions
DIAGNOSIS OF SWALLOWING DYSFUNCTION
• On clinical evaluation detection of aspiration better with liquids than solids:
• 3 ounce water test- 100% specific, 51% sensitive
• Clinical evaluations for aspiration likely more specific than sensitive
• Better at deciding a child DOESNOT aspirate on clinical evaluation
Calvo I, Conway A, Henriques F, Walshe. Diagnostic accuracy of the clinical feeding evaluation in detecting aspiration in children. Dev Med Child Neurol 2016;58:541-553Suiter et al. The 2-ounce water swallow challenge: a screening test for children with suspected oropharyngeal dysphagia. Otolaryngol Head Neck Surg 2009;140:187-90Suiter and Leder: Clinical utility of the 3 ounce water swallow test in dysphagia. Dysphagia 2008;23:244-250
DIAGNOSIS OF SWALLOWING DYSFUNCTION
• Video fluoroscopic swallowing studies
• Fiberoptic endoscopic evaluation of swallowing
• Bronchoscopy
Calvo I, Conway A, Henriques F, Walshe. Diagnostic accuracy of the clinical feeding evaluation in detecting aspiration in children. Dev Med Child Neurol 2016;58:541-553
Da Silva et al. Comparison between VFSS and FEES for the diagnosis of dysphagia in Children. Otolaryngol Head Neck Surg 2010; 143:204-9
Use the evaluations to enable
The evaluations of swallowing should not be the only
determining factor about whether or not a child can eat
Think about
What do we need the swallow study to tell
us
Ask the right questions and you
might get some useful answers
A swallow study is not a pass or fail test
While aspiration
complex and determining
its significance is challenging
We acknowledge• Respiratory illness has a 44%
higher occurrence in childrenwith neurological impairment
• The major cause of recurrent pneumonia is oro-pharyngeal incoordination
Owayed AF, Campbell DM, Wang EL. Underlying Causes of Recurrent Pneumonia in Children. Arch Pediatr Adolesc Med 2000; 154:490-494Thomson et al. Aspiration and Non-Aspiration Pneumonia in Hospitalized Children with Neurologic Impairment. Pediatrics 2016; 137:146Romano D, Wynckel M, Hulst,J, et al..European Society for Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for the Evaluation and Treatment of Gastrointestinal and Nutritional Complications in Children with Neurological Impairment. JPGN 2017; 65:242-264
While aspiration
complex and determining
its significance is challenging
There are other factors that contribute to pneumonia
In children who aspirate do we
mitigate all other risks…
• Do we stop feeding if the child cannot self-feed?
• Do we stop feeding if the parents smoke?
• Do we stop feeding when there is dental decay?
Andrew MH et al. Feeding difficulties in children with cerebral palsy. Arch Dis Child EducPract Ed 2012; 97:222-229
Dua et al. Effect of chronic and acute cigarette smoking on the pharyngoglottal closure reflex. Gut 2002; 51:771-775
Exploring the balance
Of risk and participation
If we know there are factors complicating
Aspiration risk…
• We can address them systematically
• Nutrition: cornerstone of health
• Making the children healthier helps the weather the storms
• Co-existing health conditions
• Address saliva
• Explore options for reflux
• Address pneumonia• Weakness
• Positioning
• Physio techniques
• Feeding Strategies and Training
Feeding Strategies: Balancing risk and quality of life
Ferluga ED, Archer KR, Sathe NA, e al. Interventions for Feeding and Nutrition in Cerebral Palsy. Comparative Effectiveness Review No. 94,
AGRQ Publication No. 13-EHC015-EF. Rockville MD: Agency for Healthcare Research and Quality. March 2013
Snider L, Majnemer A, Darsaklis V. Feeding Interventions for Children with Cerebral Palsy: A Review of the Evidence. Physical & Occupational Therapy
in Pediatrics (2011); 31:58-77
Morgan AT, Dodrill P, Ward ED. Intervention for oropharyngeal dysphagia in children with neurological impairment. Review. Cochrane Database of
Systematic Reviews 2012, Issue 10.Art.No CD009456
Feeding strategies are generallyUnderstudied Lack evidence
Improved nutrition
• Assess
• Monitor
• Optimize
Improve Nutrition:
• Assess• Monitor• Optimize
Balancing Risks:
Poor bolus control Bolus more cohesive
Poor swallow triggerImprove the flavor to help
trigger the swallow
Constant choking & coughing
Limit to tasting or pleasurable
oromotoractivity
Community too afraid to participate
Challenging the Fear of
Participation:
• Socialize at the table• Tube feed at the table• Pleasurable sensory activities• Training
Feeding strategies: training
Adams MS, Khan NZ, Begum SL et al. Feeding difficulties in children with cerebral palsy: low cost caregiver training in Dhaka, Bangladesh. Child: care, health and development 2011;38:878-888Hettiarachchi S, Kitnasamy G. Effect of Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour During Mealtimes. Disability CBR Inclusive Development 2013; 24:75-97
Google imageWith permission Google image
Training decreases fear
Training and education provide a framework for participation
• Because you can systematically address concerns
• If you educate people on • Balancing risks• Dealing with confounding factors• Having feeding plans that acknowledge
concerns, participation in feeding may prevail
SoHow do we communicate with organizations to allow children to eat even in the face of risk?
Shared Decision Making:Engage
• Engage the child, family, care-providers and community agencies
• Get input and share information
• Set the stage to mitigate risk to promote participation
Shared Decision Making:
Deliberate
• Elicit perspectives of allstakeholders
• Comprehensively assess the health, feeding skills and risks and the environment
• Consider the possible outcomes• Health
• Quality of life
• Value of participation
Shared Decision Making:
Decide Together
• Integrate the information
• Review the evidence• Risks, benefits, certainty of outcome
• Acknowledge different perspectives
• Empower choice making
Even in the face of risk
Children, youth and their parents are opting for oral feeding
Sometimes this places them at odds with different groups
Let’s gather evidence so we can deliberate and decide together
Omar
• 6 year old boy with cerebral palsy
• GMFCS V
• MACS V
• EDACS IV
• Family newly immigrated to Canada
• No regular medical care or therapy intervention
Omar
Food soaked in liquid, few choices
No adaptive equipment, poor positioning
Nutrition borderline
Omar’s Family’s Goals
Continue oral feeding
Looking for positioning aids
Parents acknowledge musculoskeletal challenges from holding
The ICF
Body Structure Function Impairments
Impairment Ingestion Functions:Reflux and digestive
Safety of eatingPain with digestion
Constipation
SENSORYVision
HearingTasteSmell
Oral tactile defensiveness
MOTORGMFCS V
Muscle tone, Posture, ROM,
Strength, Coordination
HydrationWeight, height
Mineral Electrolyte balance
Pain with digestion
Body Structure Function Impairments
• Aspiration
• Positioning/postural control
• Coordination
• Oromotor skills
• Dental care
• Respiration
• Constipation
• Reflux
• Secretion control
Activity and Participation
Eating/Feeding
Community
School
Home
Environmental Factors
Sensory• Food texture• Taste
• Smell
Feeding environment
Positioning
Individual attitudes regarding
feeding. i.e. readiness
System policies that support
participation in school, home community
Feeding Expertise/Skill
ProviderCaregiver
Child and Family
Physical Environment
Personal Factors
Child and Family
Culture: who feeds
Motivation
Educational levelAge
ComfortTrust
Spirituality and Beliefs
Omar Outcomes
Mitigating Risk is a BALANCING act
SKILLED SUPPORT• Oral motor skill
assessment and development
• Positioning and seating
• Appropriate utensils• Texture and viscosity• Treating constipation• Training caregivers
TRAINING CAREGIVER• Respecting culture/religion• Understanding
socioeconomics• Recognizing feeding may be
emotional• Position of caregiver• Use of appropriate utensils• Blending food• Boosting calories Let’s look in detail at
feeding training And its impact
Why Train?
Quite often the person with significant feeding impairment is dependent on their primary caregivers, and thus they are the keepers of the majority of the information about their care regime
● Caregivers report issues regarding accessto support and training
● Translation across environments
● Lack of knowledgeable service providers
● Staff turnover and reassignments impactcontinuity of care
● Mismatch between the child’s needs andthe skill set and level of the feeder
People with significant feeding impairment are dependent on their primary caregivers who hold most of the information about their care:
● Caregivers report issues regarding access to support & training
● Translation across environments
● Lack of knowledgeable service providers
● Staff turnover & reassignments impactcontinuity of care
● Mismatch between the child’s needs &the skill set and level of the feeder
Who Are We Training?
Parents: Acknowledge they are the experts when their child is concerned• Supplemental training, “ a tweak” of their current
regime• With training comes improved compliance
Paraprofessional: may come with a diverse knowledge base• Supports in place ongoing• Refreshers and individualized training• Plan for follow-up
Meet them at
their level
“Tell me and I forget, teach me and I may remember, involve me and I learn.”
Benjamin Franklin
Relevant
Achievable
Functional
What Have Others Determined About Training?
“ A substantial amount of dysphagia intervention will be around training others to support those who have complex eating and drinking needs.” Harding & Halai (2009)
“Results suggest both modeling and rehearsal were sufficient to obtain high levels of treatment integrity when combined with verbal instructions, a finding that is consistent with previous research on modeling and rehearsal”
“By contrast, didactic instruction (written and verbal instructions) delivered once did not produce acceptable levels of treatment integrity, a finding that also is consistent with training literature.” Mueller, MM., Piazza, CC. , Moore, JW. et al. (2003)
What Have Others Determined About Training?
“Experiential workshops helped participants to understand first-hand thereason for the advice given by healthcare professionals.”
“A combination of teaching methods could support the different learningstyles of the participants and encourage better understanding and recall ofinformation.” Hetiarachchi, S. & Kitnasamy, G. (2013)
Value of Multiple Training Techniques
Addresses a variety of learning styles
Experiential training is a powerful tool• Putting yourself in the child’s
position• Improves retention of
information • Multisensory experience
improves processing
Hetiarachchi, S., & Kitnasamy, G. (2013)
“Of particular importance are support and prompting guidelinesrelating to pacing, positioning, and awareness of swallowing, whichcan help prevent aspiration and asphyxiation. Moreover, speech andlanguage pathologists should ensure that the reasons for followingconsistency modification and equipment use guidelines are fullyunderstood by family caregivers, who appear to be more resistant tousing the dysphagia guidelines and, on occasion, gave the authorsthe impression that they did not like being ‘‘told’’ how to feed theirown family members.”
Chadwick, Darren & Jolliffe, Jane & Goldbart, Juliet. (2003). Adherence to Eating and Drinking Guidelines for Adults With Intellectual Disabilities and Dysphagia. American journal of mental retardation : AJMR. 108. 202-11. 10.1352/0895-8017(2003)108<0202:ATEADG>2.0.CO;2.
Figure 1. Histogram showing the comparison of adherence across observational setting for the different types of guideline.
Chadwick & Jolliffe & Goldbart. (2003)
Training Paraprofessionals
Pre and Post Test
• Initial training containing multiple experiential activities
• Individualized peer training
• Follow-up/ Conformance Measure
• Consider assigning primary and back-up feeders via a self-report on a feeding comfort scale
Training Food Prep Staff
Meeting the needs of the clients
• Variety of food options including those that meet dietary needs• Food Preparation- Hands on demonstration of each texture • Detailed Feeding Support Plans that are driven by the Diet Order• Opportunity to trial new products• Daily Check of Foods & Tasting all foods is a MUST• Texture Changes in the moment both in the kitchen and at the table• Training supports compliance and helps staff identify as having a role
in client care
Old Terminology
RegularDysphagia Advanced/Chopped
Mechanical Soft/GroundThick PureeThin Puree
Pudding ConsistencyHoney ConsistencyNectar Consistency
Naturally ThickThin
Why Follow IDDSI
Standards?
• Standardized methods to measure each level
• Consistent terminology across disciplines and environments (it’s international)
• Food Labeling is being enacted to newstandards
• Allows for more options but also allows facilities to identify fewer levels that best meet their client’s needs
Key Components to Include in Basic Feeding
Training
Review of Typical Oral
Motor Feeding
Positioning for Feeding
Providing Support
Equipment Selection and
Use
Food Preparation
Texture Modification
Special Dietary Needs
Common Problems
SocializationEnding the
MealSafety
Presentation of Food &
Liquids
Ready to Eat? Experiential Activities Enhance Training
• Experience Lip Closure in Flexion and Extension
• Swallowing without Lip Closure
Lip Closure
• Neutral Pelvic Alignment
• Kyphosis• Lordosis
Positioning and the
Impact on Swallowing
What Happens Next Once Training is Completed with Staff ?
Green Light = May be fed by all Program Staff/Para-Professionals (EDACS Levels II-III)
Yellow Light = May be fed by experienced feeders only with specialized training (EDACS Levels III-IV)
Red Light = Fed by Feeding Professional Only with emphasis on therapeutic feeding/oral motor skills/secretion management (EDACS Levels IV+-V)
Sellers D, Mandy A, Pennington L, et al. Development & reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Dev Med Child Neurol 2014; 56
Once basic feeding instruction is completed green lightclient specific training is provided
Review of Individualized Feeding Support Plan
Observation of the feeding trainer
Opportunity for the new feeder to offer a small portion of the meal under direct supervision
1st Meal
New feeder performs all aspects of the meal
Mealtime set-up to Last Bite
Feeding under the direct observation of the trainer
Discussion and input is provided throughout
2nd Meal
New feeder is independent and the trainer is positioned nearby to assist should they be needed
3rd Meal
What elements
would you include
• In an individualizedFeeding Support Plan?
Sample Feeding Support Plan
EDACS III
Mirrors Diet Order
Provides detailed instructions regarding:
• Texture
• Positioning Needs
• Food Preparation
• Feeding Techniques
• Drinking Techniques
• Individual & Parental Preferences
• What to Expect- Typical Volume
• Who Can Feed
• Who can Respond to questions about this plan
Sample Feeding Support Plan
EDACS IV
Mirrors Diet Order
Provides detailed instructions regarding:
• Texture
• Positioning Needs
• Food Preparation
• Feeding Techniques
• Drinking Techniques
• Individual & Parental Preferences
• What to Expect- Typical Volume
• Who Can Feed
• Who can Respond to questions about this plan
Sample Feeding Support Plan
EDACS IV-V
Mirrors Diet Order
Provides detailed instructions regarding:
• Texture
• Positioning Needs
• Food Preparation
• Feeding Techniques
• Drinking Techniques
• Individual & Parental Preferences
• What to Expect- Typical Volume
• Who Can Feed
• Who can Respond to questions about this plan
Results of Training
• Pre and Post Training for Drinking with a Student who is EDACS Level IV
• Pre and Post Training AdministeringMedication to a Student who is EDACS LevelIV
Teaching Videos
Final Thoughts“When the Doctor asks me
if I have any concerns, I always say no because he
always has had this difficulty.”
“I didn’t really train anyone to feed me, because I was so used to the way my older
brother fed me. He just stuffed the food in.”
“I was working this weekend and I noticed one of the kids scooping all their food onto
the floor. All I did was turn the plate the way I was taught in training and that fixed
it. I was so glad I could help.”
“I didn’t realize she was losing so much liquid, until I
was shown another way. This looks better.”
Developing Feeding Plans
Engage stakeholder and gather information
Deliberate: Assess risks, engage the ICF principles, train
Decide together: Feeding is a team sport
This Photo by Unknown Author is licensed under CC BY
Time for discussion
What are the barriers to feeding participation you face in your work
setting?
What strategies do
we need to foster
participation in eating?
• Activate shared decision-making?
• Take responsibility for the plan?
• Negotiate critical elements with the children, families and professionals?
What tools do we need to help decide on feeding
plans?
What are the key elements you
would include in caregiver training?
• Any other considerations in your setting?
• Any other ideas for imparting knowledge?
Objectives
To articulate the ethics and quality of life implications for participating in eating
To elucidate the risks of oral feeding and how to mitigate them
To integrate important elements of feeding training in different community settings
Presenters
Cindy Dodds, PT, PhD, [email protected]
Gina Rempel, MD, [email protected]
Marianne Gellert-Jones, MA, [email protected]
Barb Borton, MSc, [email protected]