Issue 137 Dysphagia in the community a paediatric perspective

PAEDIATRIC COMMUNITY

DYSPHAGIA IN THE COMMUNITY: A PAEDIATRIC PERSPECTIVE Jenni Simmons Highly Specialist Speech and Language Therapist, Betsi Cadwaladr University Health Board (NHS) Jenni has worked as a Paediatric Speech and Language Therapist for eight years. She currently works with children with complex needs, assessing and providing intervention to develop both communication and feeding skills.

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Speech and language therapists (SALTs) play an important role in supporting children with feeding and swallowing difficulties. Promoting safety and ensuring adequate nutritional intake are always primary goals1 for all SALTs and this is no different when working in the community.

Swallowing difficulties are collectively labelled ‘dysphagia’. Infants or young people who suffer from dysphagia may have: • problems with sucking, chewing, or swallowing effectively and safely; • difficulties developing their feeding skills; • aversion to a particular taste, texture or method of feeding; • behavioural difficulties associated with eating, drinking and mealtimes.2 Children with a neurodisability and those born prematurely are at a higher risk of having feeding difficulties; however, we cannot exclude a number of children in the typically developing population. The Royal College of Speech and Language Therapists (RCSLT) has summarised the incidence of feeding difficulties as occurring:2 • between 25% and 45% in a typically developing paediatric population; • between 32% and 44% for children with general neuro-development disabilities; • between 26.8% and 40% of infants born prematurely.

Although some of these children may be seen in the hospital setting, a large proportion of them will be assessed and given intervention in the community, either in their homes or in an educational setting. Many of the children on a SALT’s caseload will be seen in an educational setting, which is important, as children spend a large portion of their week in school and will

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have the opportunity for meals and snacks. Dysphagia can cause impaired health and nutrition, which clearly has an effect on a learner’s ability to attend to instruction and participate in the learning process. Educational settings offer unique challenges for SALTs.1 The therapist will rely on teachers, support workers and school staff to feed the child, food for the child will often be prepared by the school kitchen and modified to meet the specific recommendations for the individual child and there are many school-day distractions within the environment that may need adapting. Management of dysphagia is an educational priority because it threatens the academic, social and emotional wellbeing of students with disabilities.1 Building relationships within the school is vital. School nurses assigned to students with swallowing and feeding disorders can help facilitate communication3 between health and educational colleagues.

A MULTIDISCIPLINARY APPROACH

Today’s schools often have a diverse cultural population which needs to be considered. The American SpeechLanguage-Hearing Association (2007) (ASHA) comments that one of the most significant aspects of a culture is its relationship between food and eating.

Guidelines from this source state that:4 ‘Professionals who work with students with swallowing and feeding disorders need to be aware of the cultural beliefs and attitudes of each student’s family.

Table 1: MDT - the work involved for team specialists and parents Speech and language therapist

Parent

• Identifies at-risk students.

• Provides assessment and treatment.

• Establishes swallowing or feeding plan.

• Trains school-based personnel and the parent as needed.

• Provides therapeutic intervention.

• Communicates with the parent.

• Communicates with the medical professional.

•

• • •

School nurse

Class teacher

•

• • • •

•

•

•

•

•

Monitors the health, weight and overall nutrition of the student.

Monitors respiration if needed.

Assists in communicating with paediatricians.

Consults with parents and school staff.

Assists with tube feeding or medication.

Shares knowledge of student’s feeding habits, food preferences and mealtime environment.

Provides medical and feeding history.

Shares beliefs related to eating and foods.

Implements swallowing and feeding strategies in home and community environments.

Implements the swallowing and feeding plan in the classroom.

Monitors changes in the student’s swallowing and feeding in daily classroom activities.

Coordinates the personnel responsible for feeding students.

Oversees the mealtime environment to make it safe in the classroom or canteen.

Supports communication and social goals during feeding.

Occupational therapist

Physiotherapist

• • •

• Addresses postural skills and mobility issues.

• Addresses positioning and adaptive equipment needs related to positioning for mealtimes.

Addresses fine motor skills related to self-feeding.

Addresses sensory and regulation issues.

Addresses positioning and adaptive equipment for eating.

These attitudes and beliefs guide the family’s integration of the feeding program at home.'

This emphasises the importance of families collaborating and liaising with professionals continuously throughout episodes of care regarding their child’s feeding. This cannot just be to help inform about cultural issues, but should be for every aspect of the child’s feeding assessment and their intervention process. Some children can be very different at home than at school in regard to what they eat, how they are positioned when eating, where they feed and how they are fed and by whom. Parents need to be part of the process from the initial referral, so that the therapist can assess the child across all environments with all feeding partners to ensure the correct advice and strategies are provided.

Parents are one significant part of a larger team which, as a whole, needs to make sure the children receive a comprehensive and thorough feeding plan. A multidisciplinary approach is vital to ensure all the needs of the child are met.

The ASHA (2007)4 has produced guidelines with expected contributions between different members of the child’s team. This is summarised in Table 1.

Table 1 does not offer an exhaustive list; other professionals who may also be involved include: • a dietitian to monitor the weight and overall nutrition of the student and also offer advice regarding tube feeding; • a paediatrician to monitor and review the child’s overall health; • a psychologist to assess and offer advice and strategies regarding behavioural elements of feeding.

A study by Cowpe, Hanson and Smith (2014)5 investigated what parents of children with dysphagia thought about their child’s multidisciplinary team. This research states that, ‘without exception, parents reported a desire to be recognised as a key member of their child’s MDT.’ Parents were reported to value the specialist knowledge that the professionals could provide. It was also noted that parents valued the professionals more who listened and sought their opinion about their child’s condition. The impact of accessing services, the amount of time allocated to their child, the flexibility of service delivery (i.e. could the child be seen in different environments, such as home and school) and www.NHDmag.com August/September 2018 - Issue 137

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COMMUNITY

There is no single program that works for all children with dysphagia.

Feeding plans need to be tailored for each individual. staffing, were major contributors of parents being satisfied or dissatisfied with the service that was provided. The discussions within the research emphasise the differences and inconsistency of packages of care available to clients in different localities.

TREATMENT STRATEGIES

Generally, treatment strategies can be divided into compensatory procedures, which are particularly useful for children, and direct therapy strategies.6 The goal of any feeding plan is to ensure that the child is able to establish or return to a safe and efficient oral intake on a normal diet without the need to use any special strategies. This goal may not be attainable for all children.6 There is no single program that works for all children with dysphagia.1 Feeding plans need to be tailored for each individual.

Below are a few examples of interventions and strategies which may be implemented with a client when working with them in the community; this is not an exhaustive list: Feeding pattern alterations Changing the feeding pattern for the child can make a significant difference in the safety and efficacy of eating. 6 Suggestions may include: • slowing down the pace of the meal; • giving verbal and physical prompts that the food is being presented; • encouraging additional ‘fake’ or ‘dry’ swallows to clear food and residue in the mouth and pharynx by presenting the child an empty spoon; • encouraging self-feeding, if appropriate and safe, which will increase the child’s awareness that a swallow is needed.

Environmental changes The school environment in particular can be noisy and full of distractions, especially in some locations such as the canteen or busy classroom. Some children will benefit from reducing the distractions when they are eating, such as being fed in a quiet classroom rather 42

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than in the noisy canteen. When children can handle the distractions of a school cafeteria, their opportunities to be included in the lunchroom with peers with and without disabilities should be facilitated and supported.1 There are pros and cons of eating in isolation; safety needs to be weighed up against the reduction of time in socialising with peers. Also, encourage the use of adaptive feeding equipment to improve independence when possible.

Postural changes It is vital that staff working with the child understand the importance of body position for a safe swallow. The postural recommendations would be dependent on each child’s abilities and physical difficulties in relation to their swallow, so staff would need to be trained to ensure a child’s safety.

Diet modification This is the change of consistency of food and drink to ensure a safer and more efficient swallow.

Staff training Dependent on the needs of the staff, training would make sure that the ‘feeders’ were competent and confident in feeding the child in their care, but equally able to identify signs and symptoms of aspiration, or difficulties in relation to the child’s feeding.

COMMUNITY CARE

As discharging from hospital into community care becomes more frequent and more of the norm, the complexity and number of children with dysphagia needing ongoing care, assessment and intervention in their everyday environments is going to increase. The main goal for the SALT is to ensure that the child’s swallow and feeding are as safe as possible in order to reduce the risk of aspiration. This only works with a competent team of professionals working together in the child’s environments inclusive of parents and school staff, to create a unique feeding plan for the individual child.