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The Anaphylaxis Campaign: Youth Workshop Programme

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People with allergies are not ill but if they come into contact with an allergen, they are at risk of sudden death from anaphylactic shock. Reactions can occur within seconds of exposure, but on rare occasions can also happen a few hours later. Symptoms include swelling of the lips and throat, difficulty with breathing, nausea, urticaria, abdominal cramps, collapse and loss of consciousness.

Abstract

 

VOL: 99, ISSUE: 17, PAGE NO: 44

Jennifer Percival, Dip(Counselling), FETC, RGN, RM, RHV, is youth workshop leader, The Anaphylaxis Campaign

 

 

People with allergies are not ill but if they come into contact with an allergen, they are at risk of sudden death from anaphylactic shock. Reactions can occur within seconds of exposure, but on rare occasions can also happen a few hours later. Symptoms include swelling of the lips and throat, difficulty with breathing, nausea, urticaria, abdominal cramps, collapse and loss of consciousness.

 


 

Parental reaction

 


 

- Discovering that your child has a potentially life-threatening allergy to food can be very frightening for a parent. Many only feel comfortable when they are controlling all aspects of their child’s life. Letting a child be responsible for his or her own food choices can be extremely difficult for parents and frustrating for the child, who may feel over-protected. Primary care staff are frequently asked for advice on how to ensure that a ‘rebellious’ teenager takes care when away from home.

 


 

The Anaphylaxis Campaign

 


 

- Most fatalities from anaphylaxis occur in people who were unaware they were at risk, or had not been taught life-saving procedures. The Anaphylaxis Campaign, established in 1994, aims to raise public awareness of life-threatening allergies, help people to understand and manage their allergy, and lobby for improved food labelling. The campaign’s one-day youth workshops are designed to support the special needs of young people aged 11 to 20 who are making the transition to adulthood.

 


 

The workshops aim to help teenagers to assess situations and manage their risk safely. They have been extremely popular - more than 380 have so far attended.

 


 

The Youth Workshop Programme

 


 

- The workshop is fully interactive and caters for up to 20 participants of mixed ages. The programme covers:

 


 

- Signs and symptoms of an allergic reaction;

 


 

- What happens to the body during anaphylaxis;

 


 

- How to use an adrenaline injector (Epipen or Anapen);

 


 

- How to store and label your medical kit;

 


 

- Ways to reassure your parents that you can cope confidently.

 


 

The timetable is flexible and adjusted according to each groups’ needs. At the beginning of the day the trainers establish what the teenagers already know and what they would like to learn. Experience has shown that dividing the participants into age-appropriate subgroups helps them relax, open up and ask their own specific questions.

 


 

The youngest group often ask:

 


 

- What does it feel like to use the adrenaline injector?

 


 

- Is it safe to eat school dinners?

 


 

- How do you get teachers to take you seriously and remember your allergy?

 


 

- What do you say to friends who throw peanut butter sandwiches at you?

 


 

- How do you get the school to allow you to go on trips abroad?

 


 

- Will they find a cure?

 


 

From age 14 they often ask:

 


 

- How do you handle over-protective parents/carers?

 


 

- Why do food manufacturers put warning labels on everything?

 


 

- How do you tell new friends about your allergy if you are going out?

 


 

- What happens if you accidentally eat something you are allergic to?

 


 

The 16+ age group ask:

 


 

- How do you explain your allergy in restaurants, especially if the waiter does not speak English well?

 


 

- How do you tell a new partner about your allergy and ask them not to eat a particular food, as it would mean you cannot kiss them?

 


 

- How do you manage on a foreign holiday?

 


 

- How do you stop parents worrying?

 


 

- How do you explain to flatmates that you are at risk of cross-contamination if they do not wash up properly?

 


 

To clarify the support needed and identify any potential problem areas, the participants’ current attitude and behaviour around risk is established. Each age group is given a flip chart with two questions:

 


 

- What are the risks I would never take?

 


 

- What are the risks I sometimes take?

 


 

The things participants would never risk include:

 


 

- Eating foods they know they are allergic to;

 


 

- Not asking about ingredients/contents of a new food.

 


 

The risks participants would take include:

 


 

- Eating food which has a ‘May contain nuts’ warning;

 


 

- Going out without adrenaline;

 


 

- Eating something without checking the ingredients;

 


 

- Kissing someone at a party where nuts were served;

 


 

- Getting drunk;

 


 

- Relying on someone else’s word about ingredients.

 


 

At this stage, the programme trainers do not make any observations or comments on the results, but use the information to inform the theoretical session.

 


 

Managing in an emergency

 


 

- It is important that all the participants know how to assess potential risk and are able to manage in an emergency. Most have been seen by a specialist allergy service and have had adrenaline prescribed. They are asked to bring their emergency equipment to the workshop.

 


 

The participants are asked to show the group how they label and store their equipment. This exercise helps them to obtain practical tips from each other. The factual aspects of anaphylaxis are then covered by lecture and video. Each teenager is provided with an adrenaline trainer pen and their self-administration technique is checked. The workshop leaders stress that the most dangerous thing they can ever do is not carry their adrenaline with them at all times.

 


 

Many participants admit that they are afraid of the needle and do not like the idea of it hurting them. Their fears are discussed in detail and the workshop leaders provide reassurance. A real adrenaline pen is injected into an orange and the participants are shown the device. This leads into a discussion about needle safety and remembering to note the time of the injection.

 


 

Personal testimonies

 


 

- One exercise that powerfully demonstrates the nature of real-life risk is when participants tell each other about the times they have had allergic responses.

 


 

Stories have included: having a reaction to an innocent jam sandwich, and on investigation discovering the knife had been previously used for peanut butter; buying a chocolate ice cream, not knowing that the scoop had previously served the pistachio flavour; and applying suntan lotion, unaware that it contained almond oil.

 


 

Workshop leaders also ask about any frustrating situations the participants have experienced as a result of an allergy. Common themes are: being refused a school trip; not being invited to a friend’s birthday party; or having your parent supervise you all the time.

 


 

Using role play

 


 

- During the afternoon the participants have the opportunity to role play some of the different scenarios they have discussed or found difficult in the past. The themes chosen often include:

 


 

- Being served in a restaurant by a waiter who does not speak English. Participants try out ways of finding out the ingredients of the food before they place an order;

 


 

- A child going to talk to a teacher about allowing him to go on a school trip, after negotiating permission with his parents;

 


 

- Teenagers going to a party and learning to tell their friends about their allergy and how to use an adrenaline pen;

 


 

- Going to a nightclub where the bouncer says you have to leave your injection kit at the door.

 


 

With support from the workshop trainers, each group presents their play to the rest of the participants. As well as being great fun, it has been observed that practising these situations helps the participants to gain confidence in their ability to manage.

 


 

Risk assessment

 


 

In the last exercise of the workshop, the ‘risk-taking’ flip-chart sheets are reviewed and the participants are asked if they would like to make any changes. To the relief of the trainers, the participants always demonstrate a better awareness of risk by the end of the workshop.

 


 

The immediate impact of the workshop can be seen - they cross out items on the list they made that morning that they now realise would be unsafe to continue doing. The campaign has found that teenagers are more likely to avoid taking risks when they decide this by themselves, rather than when they are told by someone else. Helping them to help themselves is a powerful and effective way to work with this age group.

 


 

Evaluation

 


 

- The evaluations show that the participants highly value the workshops and become more confident as a result of them. Prior to the workshop, many participants had never met another person with allergies or had a chance to discuss their fears. The opportunity to talk to their contemporaries and find out how they cope with their allergies often proves to be the most popular session.

 


 

Participants report being more confident in managing their allergy and asking about food ingredients. Many also state that since the workshop they have carried adrenaline at all times.

 


 

The Anaphylaxis Campaign believes that these workshops help teenagers with allergies to make a safer transition to adulthood. The positive results from the workshops demonstrate the value of helping and empowering teenagers as they separate from their parents’ supervision. Primary care staff could draw on the examples and findings to enhance the one-to-one support they provide within family settings.

 


 

CONTACT DETAILS AND INFORMATION For information on future dates of the workshops, contact:

 


 

The Anaphylaxis Campaign, PO Box 275, Farnborough, Hampshire, GU14 6SX

 


 

Tel: 01252 542029

 


 

 


 

 


 

RESOURCES

 


 

A new leaflet to accompany the workshops has been produced for the parents of allergic teenagers, entitled Letting Go - Teaching an allergic child responsibility. It helps parents to see the benefits of encouraging children to take some responsibility, albeit under adult supervision, for their day-to-day allergy management. For a copy of the leaflet, contact The Anaphylaxis Campaign on tel: 01252 542029 or e-mail: info@anaphylaxis.org.uk

 


 

The Anaphylaxis Campaign also produces a regular newsletter and a range of educational fact sheets and training videos. Staff run a helpline during office hours and are always pleased to offer support to community nurses who need to advise adults or teenagers living with allergy.
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