Table 3.

Examples of feedback and adaptations according to the WHO adaptation guidelines and EVM framework.

Dimension	Feedback (Identified Issue)	Adaptation
STRUCTURE & DESIGN	Information presented in long paragraphs.	▪Reduction in text (meaning remaining) ▪Use of bullet points to summarize ideas and concepts ▪Illustrations added to ‘break down’ the text
	Difficult to distinguish between sections	▪Titles: Font size increased and made ‘bold’ ▪Different background colour scheme (brighter choices) for each Module
	Difficult to identify important information within a section	▪Addition of coloured text boxes
	Difficult to follow the information included in Module 3 (Lesson 2) which describes several relaxation exercises	▪Read aloud option added to the relaxation exercises
CONTEXT	The way that the role of young carers is presented needs to be ‘normalised’	▪Addition of expressions such as ‘This is normal’, ‘Many people feel this way…’, ‘It is normal to…’, ‘For many people your age…’
	Young carers need to be ‘protected’ from heavy caring loads and inappropriate caring responsibilities and this needs to be reflected in the text	▪‘Remember’ and ‘Keep in Mind’ coloured text boxes added throughout the programme reminding young people that ‘you shouldn’t have to deal with caring on your own’ and that they ‘you should reach out for help if things are getting too difficult or you feel you are not coping’ ▪Young carer characters included in the case scenarios described as ‘helping care for a family member with dementia’ rather than as the main carer. Sentences such as ‘Izan helps care for his grandma who is living with dementia…’ or ‘As a young carer you might or might not be involved in…’
	A context of support: the programmed needs to present all possible and expected sources of support (across all modules)	▪Support sources described: family members, friends, schools and teachers, young carers projects. ▪Relevant web link with information on all Alzheimer Associations worldwide added at different stages of the programme.
CONTENT (Illustrations)	Patronizing (e.g., balloon images)	▪Illustrations portraying human characters of young people and their family members added throughout (see Figure 3)
	Meaning hard to understand	▪Meaningful symbols and other illustrations related to the content added (see Figure 4)
	Threatening (e.g., warning symbol in ‘Tip’ and ‘Remember’ text boxes)	▪Warning symbols removed
	Cover image not appropriate for young people	▪New cover image (see Figure 5)
CONTENT (Narratives)	Characters in case scenarios primarily older adults, often spouses	Case scenarios across five modules edited and new ones created: ▪Placing the focus on a young character with caring responsibilities within a family unit. Example: ‘Diana helps her mum take care of her dad Dan who has dementia. She is also trying to get good grades in school. Some days she feels really stressed with everything going on’ (Module 3, Lesson 1). ▪Describing situations that are familiar to young people. Example: ‘Tom often feels tense when is on the school bus in the morning. The ride is about half an hour long and he starts worrying about all the schoolwork he has to do on top of helping his dad care for his mum. He decides to do a breathing exercise while on the bus’ (Module 3, Lesson 1). ▪Presenting young people who support their family in caring for their family member rather than being the primary carer. Example: ‘Evie’s grandma, Martha, likes to go to the community centre every Saturday afternoon. Evie helps out by walking with Martha to the centre and then bringing her back home’ (Module 4, Lesson 5).
	Case scenarios describing activities or situations unlikely (or inappropriate) for a young person
	No mention of schools and the role they might play	▪New section ‘How school can help’ added in Module 2 (Lesson 1–The journey together) ▪Case scenarios that discuss school topics added (e.g., going out with friends, homework) ▪Illustrations of young people in school uniform added (see Figure 6).
	Lack of information regarding transition to care home (and the impact it might have on young carers)	▪New section ‘Planning for future care’ added in Module 2 (Lesson 1 – The journey together)
LANGUAGE	Too technical (complex)	Example: ‘Transmitters’ replaced by ‘chemicals’; ‘Visual hallucinations’ explained as ‘seeing things that are not there’; ‘Delusions/Unreal thoughts’ replaced by ‘strong belief not shared by others (unreal beliefs)’; ‘Distressing self-protected behaviours’ replaced by ‘difficult behaviours’
	Too formal or threatening	Example: ‘Brain tumour’ deleted; ‘How to plan pleasant activities’ replaced by ‘Making time for yourself’; ‘Unmet needs’ replaced by ‘things you or the person living with dementia needs but you are struggling to achieve’; ‘Promote good sleep’ replaced by ‘help the person with dementia sleep better’; ‘Changes in judgement’ replaced by ‘saying the wrong thing at the wrong time’
	Old fashioned	Example:‘Making a phone call’ replaced by ‘on your phone (mobile)’
	Use of language that can sound ‘judgemental’ in the multiple-choice case scenario exercises	▪ Examples of replacements using tentative language: - ‘This is the correct answer’ replaced by ‘This could be a helpful answer’ - ‘This answer is incorrect’ replaced by ‘This answer might not be very helpful’ - ‘Please select all answers that you think are correct’ replaced by ‘Please select all answers that you think might be appropriate/helpful/work best’ ▪Sentences with ‘Should’ replaced by ‘Would’ or ‘Could’ whenever possible
	Use of language that implies that everybody’s experience of living with dementia and their symptoms are the same	Example: ‘People with dementia experience…’ replaced by ‘Sometimes people with dementia may experience…’ ‘Remember’ text box added: ‘Just because a person has one or two of the symptoms listed in Activity 1 doesn’t mean they have dementia’ (Module 1)
	In Module 3 (Lesson 3) there is only reference to pleasant activities	▪This lesson has been edited to include the term meaningful. Meaningful activities (not always pleasurable) can also be important to young carers (e.g., doing homework)
	Language that sounds ‘too much like school’	▪The word ‘lesson’ replaced to ‘session’ throughout ▪‘Improve your skills…’ replaced by ‘we will talk about how you can learn about…’