Verbal/face to face|
Most common and effective method.
• Spend time with patients and caregivers and explain the diet ‘one to one,’ answering immediate questions. Try to make sessions very practical using aids such as food package labelling, web-based supermarket shops to plan meals, and demonstrate how to make up protein substitutes.|
• The end of every ‘verbal’ teaching session should include 'feed back time’ whereby patients/caregivers’ feedback what they have learnt.
•. Patients/caregivers should be given a short, written summary (e.g. 4 to 5 action points) about advice given.
• Brief follow-up telephone calls (e.g. reiterating dietary principles) are effective and increases adherence.
• Offer face to face teaching to grandparents, family caregivers, nursery and school teachers.
Written materials are commonly used to reinforce verbal education given to patients and families.
• Written information sheets should be available for caregivers, children, adolescent and adult patients with PKU, and others involved in management. It is also important that written materials are available about diet and non-diet treatments.|
• Dietitians should involve caregivers and patients in developing materials.
• All new written information should be pilot tested with a group of patients/ caregivers to assess its ‘usability’ factor.
• Provide written educational packages for nurseries and schools.
• Apps that provide basic information about diet, phenylalanine content of foods, phenylalanine counting, reminders to take protein substitute and blood phenylalanine tracking are helpful. However, apps are expensive to produce, and many are produced by commercial companies so may not be independent in the information they provide. It is important to check patient apps before recommending to patients.
Adding pictures to written and spoken language can increase patient attention, comprehension, recall and adherence.
|• Pictures are useful to show step by step procedures for administering protein substitutes, preparing recipes, and blood sample taking.|
Children’s group teaching|
Group practical sessions encourage self-management and help develop social support networks.
• Practical activities should be provided. Children may plan meals, shop for food, weigh and measure foods, and prepare meals and snacks.|
• All activities should be interactive, creative, and fun.
• Attendance at a ‘PKU school/forum’ could replace a routine clinic visit or run parallel to a clinic.
• Certificates and learning credits should be issued to encourage attendance.
• If patients are scattered in large geographical areas, the internet and other multi-media approaches could be used for ‘group’ teaching.
Peer support and patient advocates|
These are caregivers or patients who can give practical help and support.
• A PKU home support worker with personal experience of PKU care and working one to one with families can help others build confidence, improve cooking skills, diet knowledge and overall parenting skills.|
• Encouraging caregivers to network with others is good for sharing experiences, discussing coping strategies, and sharing practical information. This is particularly important for ‘new parents’ of children with PKU. This can be done through local and national events or ‘Facebook’, Instagram or other similar forums.
• Working with peer ‘patient ambassadors’ may act as a motivator and guide.
• Women who have experienced pregnancy with PKU can act as role models to teach and support girls and women with PKU.
Web-based patient education and support|
Patients/caregivers can work through teaching modules at their own pace, and gain immediate feedback from interactive programmes
• National and international teaching PKU packages for different ages of patients should be developed, with computer marked assessment of knowledge learnt, with feedback to the PKU health professional team.|
• For adolescents and adults with PKU, signing up to web-based ‘mindfulness’ programs to help well-being may be useful.
• European websites such as the ESPKU contain information about travelling with PKU, information about the phenylalanine content of common European foods, explain European food law and implications for food labelling.
• National societies should provide more standard resources e.g. ‘print off’ letters to give to schools, nurseries, airport security, hotels, restaurants explaining about PKU and a low phenylalanine diet.
• 'YouTube' educational videos are useful to explain about diet to all ages and intellectual abilities.
|Re-evaluation and audit of knowledge||• It is important to re-evaluate caregiver/patient knowledge, understanding, and interpretation of dietary principles once every 2 to 3 years. Even an update providing new information is valuable.|