ethics

Informed refusal?
Moira Wares investigates food refusal in adolescents with complex physical and learning needs.
2. Acute events
Most people lose their appetite when they have an acute illness, therefore this should be considered early when there is a refusal to eat. The child may have a sore throat, ear infection or cold. I have found children who have recently experienced seizures are often unwilling to eat. Seizure activity frequently increases at puberty so my adolescent clients may be more affected. Clients who have just experienced surgery often lose their appetite because they are in pain and feeling low. Three of my clients have had acute episodes affecting their appetite. One boy was recovering from major orthopaedic surgery, one had an increase in seizure activity and one girl had very low haemoglobin making her weak and tired.
READ THIS IF YOU WANT TO UNDERSTAND A PATTERN OF EVENTS RELATE RESEARCH EVIDENCE TO CLIENTS CARRY OUT MORE COMPREHENSIVE ASSESSMENT

n the five years I have been managing the dysphagia caseload in a special school, a number of adolescent clients with complex needs have started to clench their teeth together and turn their head away when offered food. As each case occurred in isolation it is only by looking retrospectively I have become concerned that a pattern has emerged. Prior to these episodes of food refusal each child ate adequately, although all have oral-motor problems and are on modified texture diets. On investigation, a similar pattern of behaviour was taking place at home. These pupils have difficulty communicating and only one is able to respond with yes / no. All reached adolescence before they started to exhibit this behaviour. In an emotional moment I wondered if they were telling us that they had had enough of life? While there is a wealth of articles on the adolescent feeding disorders anorexia nervosa and bulimia nervosa, there is very little specific research relating to this client group. I hoped to use what evidence there is to plan how to approach future cases. Feeding problems in children with neurological impairment are common and severe. Sullivan et al. (2000) suggest that around a third are significantly undernourished, with growth retardation most closely associated with inadequate intake as a result of self-feeding impairment and oral-motor dysfunction. Morris and Klein (2000, p.626) state that assessment should commence by looking at what is happening with the childs eating and what events have led there. It is also important to look at whether the child is displaying any other episodes of non-cooperation. Severe communication difficulties make assessment of a problem much more complicated. A child may well be showing symptoms of a behavioural feeding disorder but there are also many organic reasons for food refusal which require investigation:

fensive role of the emetic reflex as it facilitates the subsequent avoidance of foods that previously caused illness. It may be that, by refusing to eat, some of my client group are avoiding what they perceive to be a stimulus for nausea.

5. Constipation

assessment should commence by looking at what is happening with the child's eating and what events have led there.
3. Gastroesophageal Reflux
Gastroesophageal reflux (GOR) is when the lower oesophageal sphincter fails to work properly and stomach contents return to the oesophagus. This may cause discomfort and pain but when the condition becomes chronic, as is common in cerebral palsy, it can affect appetite, health and growth. GOR is considered to be very common in children with neurological impairments. Rogers (2004) states that investigations using oesophageal pH studies and upper gastrointestinal endoscopy have revealed gastroesophageal reflux rates of 70-90 per cent in children with cerebral palsy who present with failure to thrive, food refusal, small volume feeds and vomiting. It is likely that GOR accounts for at least one of my clients refusing to eat. He lost so much weight that a gastrostomy was performed to avoid him being malnourished.

Children with feeding difficulties frequently suffer from constipation. Due to oral problems and a modified texture diet, fibre consumption and fluid intake are often limited. As the bowel is stimulated by exercise, the childs difficulties in physical movement and poor muscle tone add to the problem. Constipation creates a vicious cycle. Because it is difficult and painful to pass a stool the child withholds, increasing the constipation and creating a feeling of constant fullness which causes discomfort and deters appetite. Another side effect is an increase in mucous production. Morris & Klein (2000) suggest this can affect taste and smell, trigger gagging, retching and choking and increase the aspiration risk. This would explain why some of my caseload retch and gag even before food is offered and they appear not to want to eat. One of my clients suffers from constipation so badly that she has had to be admitted to hospital for surgery because of an impacted bowel.

6. Dental Problems

1. Oral-motor problems

If feeding has been adequate up to adolescence can problems with oral-motor dysfunction start to impact at this time? With the onset of puberty and the normal teenage growth spurt an increase in calories is required. It may be that, due to poor motor skills, it is not possible for the child to take in enough food to sustain growth and energy. All of my cases have oral-motor problems but have reached adolescence managing to sustain an adequate intake. Oral dysfunction makes any additional problem increase in significance, especially during puberty. 4

4. Nausea

Nausea reduces appetite and is associated with conditions such as gastric flu, headaches, liver and kidney failure and gastroesophageal reflux. It may also appear as a side effect of some medications. In a limited study, Richards and Andrews (2004) concluded that nausea is part of the de-

Sore teeth and gums can cause food refusal for fear of further discomfort and pain. Children with cerebral palsy and feeding disorders are more prone to tooth decay, oral problems and dental diseases (Morris & Klein, 2000, p.349; Stanford, 2000; Ravel, 2001): Food remains may be left in the oral cavity. A reduction of acid-neutralising saliva production may occur as a side effect of medications, dehydration and mouth breathing. Re-chewing, regurgitation and re-swallowing of previously ingested food causes acid contents of the stomach to damage teeth. Control of oral musculature, involuntary muscular activity, and an inability to perform oral hygiene procedures contribute to the increased incidence of gum disease.

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2008

ethics Anti-seizure medications cause hypertrophy, which makes control of dental plaque difficult. Clenching and grinding of teeth can cause pain, as can tongue, cheek and lip biting. Pouching: placement of food or medicine between the cheek and teeth for a long time can cause dental decay. Sucrose-containing oral medication increases the risk of dental decay. It may be that my client group are refusing food because of discomfort in their mouth. Being adolescent, it may be that teeth are erupting which can cause a sore aching mouth. elevated symptoms of anorexia nervosa and picky eating in adolescence. They could not conclude whether this was because of lesser feelings of hunger, ability to ignore hunger or learned patterns of food avoidance following discomfort. They also found fighting at family mealtimes in early childhood was associated with elevated rates of food avoidances in adolescence. Non-organic reasons for food refusal can include: is similar to the general population. Phillip et al. (2005) found the majority of carers of young people with profound and multiple learning disabilities were alert to specific signs of change in emotional and mental well-being. Factors causing depression and stress included: External bereavement, moving house, change in staff, change in routine, parental separation, parental stress, transition, lack of stimulation Internal physical illness, pain, puberty, menstruation. These findings are particularly relevant to my client group. It would not be surprising if they suffer from emotional disorders such as anxiety and depression. They have increased medical problems, eating difficulties and are unable to communicate their needs easily. Indeed, one of the few ways they are able to exert some control is by stopping eating. This makes it increasingly important to examine the reasons and look at emotional as well as physical needs. Many of the factors feature significantly in the lives of my cases. One girl experienced moving house and family upset when her sister was taken into care. She has a pattern of refusing to eat when she returns to school after holidays which may indicate a problem with transition. One of the boys was in extremely low spirits following surgery and was helped by anti-depressant medication.

1. Negative feeding experiences

7. Medication

Medication, given to help and improve health, may have side effects that impinge on nutrition and decrease appetite. The relationship between drugs and appetite can be complex. For example, antibiotics, cortisone medications and diuretics all decrease zinc absorption or increase its excretion from the body. Zinc deficiencies can contribute to a reduced appetite and hypersensitivity or hyposensitivity of taste. Some medications for seizures may cause reduced appetite or anorexia, while others for muscle relaxation, seizures and gastroesophageal reflux may cause vomiting, nausea and constipation (Morris & Klein, 2000, p.341). It is important to look carefully at the drug therapy each of my clients receives as it may contribute to a sudden refusal to eat. One of the girls was given iron tablets which can cause constipation. Food refusal may be as a result of fatigue due to heart problems or respiratory distress. The physical effort of eating may require more energy than is available. Rogers et al. (1993) suggest children with severe cerebral palsy with a history of progressive fatigue during oral feeding and significant pharyngeal dysfunction may be at a risk for mealtime hypoxemia. Morton et al. (1997) looked at the feeding abilities of 20 girls with Rett syndrome, 4 of whom showed a deterioration in eating in association with breathing problems and apnoeic episodes during feeding. They also found a progressive decline in oral-pharyngeal skills. The numbers are too small for valid conclusions but the findings could well explain the major factor, of many, as to why one of my clients was reluctant to eat.

Medically based feeding issues can lead to disruption in the feeding relationship, and vice versa (Morris & Klein, 2000). Sullivan et al. (2000) reported that, on average, parents of children with disabilities spend 3.5 hours per day feeding their child compared with 0.8 hours for parents with non-disabled children. The more help the child needed, and the more extra food preparation required, the greater the caregivers stress at mealtimes.

Feeders need to be able to read the child's communication attempts so they may be sympathetic to their needs and wants
Reilly & Skuse (1992) surveyed the eating patterns of 12 children with cerebral palsy who had feeding problems related to poor oral motor skills. There was a lack of caregiver speech and the children were fed in a mechanical manner, but interactions improved as soon as eating finished. In my experience feeder anxiety levels increase when children do not take what is considered an adequate amount. Unfortunately, this often leads to the adoption of aversive techniques (coaxing, force feeding), usually resulting in a negative response. Whether because of perceived worry on the childs part or because the child finds himself in an even more unpleasant situation, stress levels are escalated still further. Feeding experiences are often disagreeable because of thoughtlessness. Lunch is never appealing if feeders talk about how unappetising the food looks, and the atmosphere is not conducive to eating if the conversation does not include the child. Feeders need to be able to read the childs communication attempts so they may be sympathetic to their needs and wants. In service training is carried out regularly in school to remind staff about making mealtimes as pleasurable as possible. When one girl started to refuse to eat, staff found it difficult not to voice their concerns while feeding her and tried to coax her to take some food. This resulted in a negative atmosphere.

3. Fear

8. Reduced endurance

Psychological issues

To gain a full picture it is also important to look at psychological issues that can contribute to the development, maintenance and exacerbation of eating problems. Adolescence is a time of rapid growth and development, with biologic, psychosocial and emotional changes. It is a time when feeding problems become prevalent. There has been a great deal of research into anorexia nervosa and bulimia nervosa but there is still debate on whether they are caused by physiological or psychological factors. It is most likely to be a complex interrelationship of both. Marchi & Cohen (1990) found digestive problems in early childhood were predictive of

2. Mental Health Problems

Depression is often associated with eating disorders. Sometimes more food than necessary is consumed to provide comfort but, for others, a depressed state means a total loss of appetite. The range of mental health problems experienced by young people with learning disabilities

Fear leading to loss of appetite and refusal to eat may manifest itself in different ways. The parents and I believe one of my clients refused to eat because of a fear of choking. After a choking episode at home and being rushed to hospital by ambulance my client was reluctant to try eating again and his parents were extremely anxious about feeding him. Chatoor et al. (1988) reviewed five cases of children who presented with food refusal after an episode of choking. All had a history of psychological issues, and became even more dependant on their parents. Their fear of choking and food refusal appeared to represent a fear of dying and being separated from their parents. My client was also in a depressed state when the choking incident occurred, finding it hard to recover from major orthopaedic surgery. It may be that he had a fear of more pain and being in hospital. The texture of his food was modified from minced to liquidised which, along with medication for depression, aided recovery. However, because of poor oral motor skills, he was unable to eat enough to regain weight and received a gastrostomy. Morris & Klein (2000, p.115) state that children who have experienced physical or sexual abuse, especially around the mouth, may react by refusing to eat. While food refusal may also be because of a fear of lumps in food, and many children show reluctance to eat certain textures, I dont think this is particularly relevant to my client group. Having reviewed the literature I plan to: 1. Look at each child in a global way and not identify problems in isolation. Several treatment strategies may be used concurrently. 5

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2008

ethics 2. Use video to look at the feeding environment and how we improve the quality of interaction at mealtimes. 3. Consider Phillip et al.s training resource (2005) to raise awareness of emotional and mental well being in people with profound and multiple disabilities. 4. Continue work on oral-motor skills to improve chewing, but not expect it to improve growth. 5. Suggest our team adopts a target of greater practical and emotional support for families feeding children with severe disabilities. 6. Continue to make the most of a helpful and supportive multidisciplinary team (discussion, shared decision making, united front to parents / carers). 7. Ensure full medical and dental assessments. 8. Request input from a psychologist regarding the childs mental health and family situation. The feeding problems experienced by children with cerebral palsy put them at very high risk for growth failure and poor health (Rogers, 2004). Would any of the causes for refusing to eat have such an effect on a child who was well nourished? Prior to undertaking this review I tended towards the opinion that, if a child required a gastrostomy, they had been failed in some way. However, my view may be changing. The literature around gastrostomy is persuasive on quality of life, safety and growth but further research looking at all the evidence relating to gastrostomy, including that of parental concerns, is necessary. SLTP Moira Wares is a specialist speech and language therapist in Dundee with NHS Tayside. Her full reference list is at http://www.speechmag.com/ Members/Extras.

References

Chatoor, I., Conley, C. & Dickson, L. (1988) Food refusal after an incident of choking, J Am Acad Child Adolesc Psych 27(5), pp.535-40. Marchi, M. & Cohen, P. (1990) Early childhood eating behaviors and adolescent eating disorders, J Am Acad Child Adolesc Psych 29(1), pp.112-7. Morris, S.E. & Klein, M.D. (2000) Pre-Feeding Skills. (2nd edn) Therapy Skill Builders. Morton, RE., Bonas, R., Minford, J., Kerr, A. & Ellis, R.E. (1997) Feeding ability in Rett syndrome, Dev Med Child Neurol 39(5), pp.331-335. Phillip, M., Lambe, L. & Hogg, J. (2005) The Well Being Project: Identifying and meeting the needs of young people with profound and multiple learning disabilities and their carers, in Making Us Count. Foundation for People with Learning Disabilities. Ravel, D. (2001) Oral Health for Children with Cerebral Palsy. Available at: http://www.angelfire. com/nc/kidsdental/topic32cp.html (Accessed: 29 April 2008). How has this article been helpful to you? Reilly, S. & Skuse, D. (1992) Characteristics and management of feeding problems of young What experience do you have of working children with cerebral palsy, Dev Med Child Neurol 34(5), pp.379-88. with adolescents with complex needs? Richards, C. & Andrews, P. (2004) Food refusal: A sign of nausea?, J Pediatr Gastronenterol Nutr Let us know via the Summer 08 forum at 38(2), pp.227-228. http://members.speechmag.com/forum/. Rogers, B., Arvedson, J., Msall, M. & Demerath, R. (1993) Hypoxemia during oral feeding of children with severe cerebral palsy, Dev Med Child Neurol 35(1), pp.3-10. Rogers, B. (2004) Feeding method and health outcomes of children with cerebral palsy, J Pediatr 145(2 Suppl), pp.S28-32. Stanford T. (2000) Cerebral palsy and dentistry. Available at: http://www.geocities.com/aneecp/dental.htm (Accessed 29 April 2008). Sullivan, P.B., Lambert, B., Rose, M., Ford-Adams, M., Johnson, A. & Griffiths, P. (2000) Prevalence and severity of feeding problems in children with neurological impairment: Oxford Feeding Study, Dev Med Child Neurol 42(10), pp.674-80.

REFLECTIONS DO I REMEMBER THAT CLIENTS ARE EXPERIENCING NORMAL LIFE EVENTS IN ADDITION TO ANY SPECIFIC ISSUES? DO I ALLOW MY THINKING TO SHIFT WHEN NEW EVIDENCE CHALLENGES MY BELIEFS? DO I CONSIDER HOW THE INTERACTION OF TREATMENTS WILL GET THE BEST BENEFIT AND DO LEAST HARM?

resources
Say it Works
Propeller Multimedia has added Say it Works, a life skills and social issues CD picture library, to its portfolio. It has also released the Life Skills Module of React 2. www.propeller.net

Talk About Change Bookshine

Young people aged 12-26 years with life-limiting conditions have made a DVD resource. www.talkaboutchange.co.uk/ Bookshine is a new pack of free books and information from Bookstart specially designed to suit the needs of deaf children from 0-5 years. www.bookstart.org.uk

Involving people

Young Mencap

Mencap has launched an interactive website designed with and for young people with a learning disability. www.mencap.org.uk/youngmencap

Childcare information

Software tutorial

AbilityNet has produced an online Dragon Naturally Speaking tutorial to help employees with disabilities such as dyslexia access computer technology via voice recognition software. www.abilitynettraining.org (35)

The Daycare Trust offers free information about childcare for parents, and campaigns for high quality affordable childcare for all. www.daycaretrust.org.uk

The Council for Disabled Children has released a booklet on how to involve children and young people with communication impairments in decision making. www.participationworks.org.uk/ResourcesHub/Pa rticipationWorksResources/tabid/316/Default.aspx On a similar theme, Bristol Universitys resource is for involving children with little or no speech in decision making. w w w. b r i s . a c . u k / n o r a h f r y / d o w n l o a d / iwanttochoosetoo.pdf

CBT online

Young people

Deafness worldwide

Family Friendly working with deaf children and their communities worldwide is a comprehensive action learning resource to help organisations working with deaf children and families throughout the world, particularly where poverty and isolation are issues. www.deafchildworldwide.info 6

A new charity and membership organisation is creating a focus for all professionals and organisations working in the field of young peoples health. www.youngpeopleshealth.org.uk/

Living Life to the Full is a free online life skills course written by a psychiatrist who specialises in Cognitive Behaviour Therapy. The developers have tried to make the course accessible to a wide range of people. www.livinglifetothefull.com

Locked-in syndrome

Special holidays

Therapeutic Holidays is a charitable organisation in Crete offering holidays combined with activities for people with special needs. www.therapeutic-holidays.org.gr

The MegaBee writing tablet has been developed with the help of people with locked-in syndrome at Stoke Mandeville Hospital. www.megabee.net

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2008

reprinted from www.speechmag.com

Informed refusal? (Full references)

Wares, M. (2008) Informed refusal?, Speech & Language Therapy in Practice Summer, pp.4-6 was based on a much longer essay entitled An investigation into food refusal in adolescents who have complex physical and learning needs. Is the origin behavioural or are there organic reasons for not eating? Below is the full reference list for the essay: Books Morris S.E. and Klein M.D. (2000): Pre-Feeding Skills. (Second edition) Therapy Skill Builders Reilly S, Douglas J, Oates J. (2004) Evidence Based Practice in Speech Pathology Whurr Publishers Journals Blisset J, Harris G, Cunningham J, Kirk J, Faltering growth: Case Study and recommendations for practice Community Practitioner.London: Nov 2002 Vol 77, Iss. 11 Coultard H, Harris G, Early Food Refusal: The Role of Maternal Mood. Journal of Reproductive and infant Psychology, 2003 Vol. 21, 4, 335-34 Chatoor I, Conley C, Dickson L, Food Refusal after an Incident of Choking. Journal Am Acad. of Child Adoles. Psych. Craig, Scambler G, Spitz L, Why Parents of Children with Neurodevelopmental Disabilities Requiring Gastrostomy Feeding Need More Support Developmental Medicine and Child Neurology 2003 45 iss. 3 183- 189 Dahl M, Thommessen M, Rasmussen M, Selberg T, Feeding and Nutritional Characteristics in Children with Moderate or Severe Cerebral Palsy. Acta Paediatrica 1996 85 697-701 Garro A, Thurman S, Kerwin M, Ducette J. Parent/Caregiver Stress During Pediatric Hospitalization for Chronic Feeding Problems. Journal of Pediatric Nursing, 2005 Vol. 20, no 4 Gisel E, Applegate-Ferrante T, Benson J, Bosma J, Effect of Oral Sensorimotor Treatment on Measures of Growth, Eating Efficiency and Aspiration in the Dysphagic Child with Cerebral Palsy. Developmental Medicine and Child Neurology 1995 37 528- 543 Gustafsson PM, Tibbing L, Gastro-Oesophageal Reflux and Oesophageal Dysfunction in Children and Adolescents with Brain Damage. Acta Paediatrica 1994, 83 1081-5 Hampton D, Resolving the Feeding Difficulties associated with non-organic failure to thrive. Child: care, health and development 1996 Vol. 22, 4 Jenkins S, Horner S. Barriers that Influence Eating Behaviors in Adolescents. Journal of Pediatric Nursing, 2005 Vol. 20, no 4

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Knibb R, Smith D, Booth A, Armstrong A, Platts R, MacDonald A, Booth I. No Unique role for nausea attributed to eating a food in the recalled acquisition of sensory aversion for that food. Appetite 2001 Vol. 36 Issue 3 Lask B, Pervasive Refusal Syndrome. Advances in Psychiatric Treatment 2004 Vol. 10 153- 159 Lindberg L, Bohlin G, Hagekull B. Interactions between Mothers and Infants Showing Food Refusal Infant Mental Health Journal, 1996 Vol. 17(4) 334-347

Marchi M, Cohen P, Early Childhood Eating Behaviors and Adolescent Eating Disorders Journal AM Acad. Child Adolesc. Psychiatry 1990 29 1 Morton R, Bonas R, Minford J, Kerr A, Ellis R. Feeding Ability in Rett Syndrome. Developmental Medicine and Child Neurology 1997, 39, 331-335 Motion S, Northstone K, Emond A, Stuke S Golding J, Early feeding problems in children with cerebral palsy: Weight and neuro-developmental outcomes. Developmental Medicine and Child Neurology, London: Jan 2002.Vol 4, Iss.1 Phillip M, Lambe L, Hogg J (2005) The Well Being Project: Identifying and meeting the needs of young people with profound and multiple learning disabilities and their carers. In Making Us Count The Foundation for People with Learning Disabilities, 2005 Reilly S, Skuse D. Characteristics and Management of Feeding Problems of Young Children with Cerebral Palsy. Developmental Medicine and Child Neurology 1992; 34:379-88 Reilly S, Skuse D, Poblete X. Prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy; a community survey The Journal of Pediatrics 1996 Vol 129(6) Dec Richards C, Andrews P, Food Refusal: A Sign of Nausea? Journal of Pediatric Gastroenterology and Nutrition 2004 38(2) Feb 227-228 Riordan M, Iwata B, Finney J, Wohl M, Stanley A. Behavioural assessment and treatment of chronic food refusal in handicapped children. Journal of Applied Behaviour Analysis 1984, 17 Rogers B, Arvedson J, Msall M, Demerath R, Hypoxemia During Oral Feeding of Children with Severe Cerebral Palsy. Developmental Medicine and Child Neurology 1993 35, 3-10 Rogers B, Feeding Method and Health Outcomes of Children with Cerebral Palsy, The Journal of Pediatrics 2004 145, 2 (Supplement) S28-S32 Shapiro B, Green P, Krick J, Allen D, Capute A, Growth of Severely Impaired Children: Neurological versus Nutritional Factors Developmental Medicine and Child Neurology 1986 28 729- 733

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Singer L, Song L, Hill B, Jaffe A. Stress and Depression in Mothers of Failure to Thrive Children Journal of Pediatric Psychology, 1990 Vol. 15, No.6 711-720 Sleigh G and Brocklehurst P. Gastrostomy feeding in cerebral palsy: a systematic review. Archives of Disease in Childhood 2004; 89: 534-539 Stallings V, Charney E, Davies J, Cronk C, Nutrition Related Growth Failure of Children with Quadriplegic Cerebral Palsy Developmental Medicine and Child Neurology, 1993 35, 126-138 Stevenson R, Roberts C, Vogtle L The Effects of Non Nutritional Factors on Growth in Cerebral Palsy Developmental Medicine and Child Neurology 1995, 37 124-130 Sullivan PB, Lambert B, Rose M, Ford-Adams M, Johnson A, Griffiths P, Prevalence and Severity of Feeding Problems in Children with neurological impairment: Oxford Feeding Study, Developmental Medicine and Child Neurology 2000, 42 674-680 Tait E, Rajah T, Chong S, Gastroesophageal Reflux in Children with Neurodevelopmental Delay Journal of Pediatric Gastroenterology and Nutrition 2004 Vol. 39 supp 1

Internet Information Ravel D. Pediatric Dental Health: Oral Health for Children with Cerebral Palsy www.angelfire.com/nc/kidsdental/topic32cp.html , accessed 03/10/2005 Stanford T. Cerebral Palsy and Dentistry http://www.geocities.com/aneecp/dental.htm, accessed 03/10/2005