Train-the-Trainer for Education & Career Support

Intro

Why Education and Career Support?

Childhood, Adolescent and Young Adult (CAYA) cancer has a disruptive impact on education and career pathways, both during and after treatment (e.g. Vetsch et al, 2018; Nicklin et al, 2021; Foster et al., 2021). Cancer treatment leads to more frequent involuntary absences from school (from primary school to university, depending on age) or the workplace. At the same time, schools and workplaces are often unaware of the needs associated with the disease and treatment. Furthermore, there is usually a lack of knowledge about what additional support can be offered. Survivors are more likely to be unemployed than comparative populations (Devine et al., 2022).

After treatment, returning to school, training or work or, depending on age, even starting school or work can be a major challenge. On the one hand, it can be socially and emotionally exhausting to reconnect after a long absence. Sometimes this can even lead to discrimination at school or in the workplace due to the difference between survivors and their peers who do not have the disease. On the other hand, the long-term effects of the disease or treatment can make it difficult to regain previous levels of ability, performance and stress tolerance.

To minimise this disruptive impact on education and career pathways, a Train-the-Trainer concept for HCPs on education and career support has been developed following a systematic review of the literature and desktop search of existing materials, as well as the results of two focus groups on the topic. In addition to the actual intention to develop the concept for health care professionals (HCPs), it was decided in the course of the development process to expand the target group of the concept. It should also be accessible to people who want to set up education or career support in their institutions or organisations or who want to create awareness in their area.

The EU-CAYAS-NET Train-the-Trainer concept is tailored to the needs of CAYA cancer survivors and aims to equip participants with the necessary knowledge, attitude and skills to deepen their knowledge and be able to disseminate knowledge or build educational and career support in their national/local structures.

Overview

Framework

For good planning of the training, consider the accessibility of the location, any special needs of the participants and a sensible and sufficient break organisation.

Prerequisite for leading the training:

• Co-lead patient advocate & healthcare professional (desirable: from psychology or social work background)
• All those who have taken part in the Train-the-Trainer programme as trainees (desirable: participation in online follow-up group)

Trainees:

• People already working in the field of education & career support
• Anyone who wants to set up something in this field
• Anyone who is interested and wants to work with us to increase awareness in this field

Recommended duration:

• 1,5 days face-to-face training
• Online follow-up sessions and supervision

Methodology:

• Active learning approach
  • In addition to imparting knowledge, skills and materials, the training provides space for self-reflection to better understand possible fields of action and problems through self-awareness.
  • Sufficient time is planned during the training for an exchange of experience (e.g. for trainees to learn from each other).

Training content and modules

Modules and content:

Module 1: Welcome: Teambuilding and introduction to the training

Goals, Methods & Material

Goal

• Getting to know each other, building trust within the group; assessing the level of expertise and experience in the group; clarifying expectations
• Overview of the training programme, presentation of the methodology

Method

• Group work
• Theoretical input

Materials

• Flipchart
• Sticky notes
• Exemplary materials for group work
• Background to EU-CAYAS-NET Train-the-Trainer

Inspiration for group work - Exemplary materials

Task: The participants have to stand next to previously placed posters with different colours/symbols that correspond to their role.

Who is who? What role are you in here?

1. You are a patient advocate/ambassador
2. You are a representative from a patient organisation
3. You are a health care professional/researcher (please indicate you profession)
4. You are somebody else

Task: The participants mark their home country with a sticker or pen on a map of Europe or the world.

Who is who? What country are you from?

Poster with a blank outline map of Europe.

Task: The participants mark their previous experiences in the field on a previously placed poster.

Who is who? How would you rate your own experience in the field of education/career support in CAYA Cancer?

1 (beginner) · 2 · 3 · 4 · 5 · 6 · 7 · 8 · 9 · 10 (expert)

Task: The participants have to stand by the previously placed posters (in different colours or symbols) that correspond to their motivation for taking part in the training.

Who is who? Why are you here?

1. You are a trainer/coach for career support in the field of CAYA Cancer
2. You offer education/career support in your institution/organisation
3. You want to build up education/career support in your country
4. You are interested in this topic and decide later
5. You are here for a completely different reason

Theoretical input - Background to EU-CAYAS-NET Train-the-Trainer

Overview of all tasks on education and career support that have been carried out within the EU-CAYAS-NET project and have been incorporated into the development of this manual.

Background: EU-CAYAS-NET Workpackages on Education & Career Support

• Collect best practices/guidance materials
  • Systematic Review of literature
  • Desktop research of existing materials/tools
  • Assemble toolkit/manual
  • beatcancer.eu (https://beatcancer.eu/project-deliverables/)
• Develop a series of recommendations
• Prepare a webinar for the community (https://www.youtube.com/@youthcancersurvivors/videos)
• Identify gaps in career support programmes for CAYA cancer survivors (Med. Univ. Vienna, CCI-E and Prinses Maxima Center)
  • Focus group #1, Vienna (CCI-E)
  • Focus group #2, Utrecht (PMC)
  • Data analysis focus groups
  • Prepare Publication (MedUni and PMC)
• Develop a train-the-trainer concept
  • Pilot testing and evaluate concept
  • Finalize concept

Module 2: Background: Impact of CAYA Cancer on education and work: challenges & protective factors

Goals, Methods & Materials

Goal

• Broaden background knowledge to…
  • enable differentiated, individualized and effective support,
  • avoid underestimation or overestimation,
  • avoid insecurity and fear of the topic.

Method

• Theoretical input

Materials/ content

• Disease- or treatment-related physical, psychological and social late effects; protective factors (figure "What factors impact Mental Health in CAYA Cancer Survivors")
• Normative and non-normative developmental tasks for children, adolescents and young adults
• Contextual factors that influence participation in education and employment (e.g. Davis et al., 2022)
• Key points for education and career support (download on https://beatcancer.eu/project-deliverables/)

Material: Figure "What factors impact Mental Health in CAYA Cancer Survivors"

1 Risk (RF)- & 2 Protection-Factors (PF)

• Disease-dependent RF: Localization, tumor biology, etc.
• Treatment-dependent RF: Surgery, radiation/chemotherapy (type - dose - intensity), seizures etc.
• Patient-dependent RF: Age at diagnosis, time since diagnosis, health and developmental status prior to disease, genetic predisposition, socioeconomic status, etc.
• RF unrelated to disease and treatment: life-events, previous mental illness, etc.
• Personal PF: favorable disease concepts, coping strategies (e.g., information seeking), etc.
• Social PF: Reliable emotional relationships, socially well-integrated family, open communication, secure economic/legal circumstances, ability to accept social support, etc.

3 Physical side effects and late effects

• Restrictions/ deficits: hormonal, cardiovascular, auditory, visual, Fertility, neurological, neuropsychological
• Infections
• sign. Weight gain/loss
• Nausea
• altered body image
• Second malignancy
• Pain
• Sleep disorders
• Fatigue
• Neuropsychological restrictions affect: Processing speed, Attention, Learning/ memory, visual/auditory/spatial perception, Planning/Org. skills, Flexibility, Language, Academic skills, Emot. Regulation, Social skills

4 Psychological & social stressors (low to severe) due to… Shock from diagnosis of disease; Medical examinations; Medical treatment; Side effect/ Late effects

• Dealing with life threatening/ uncertain course (possible relapse, palliative situation…)
• Experiencing stressful, frightening, painful medical procedures
• Impairment of age-appropriate development
• Chronic sorrow, chronic multiple stressors
• Family interaction problems
• Limited ability to care for self
• Restricted mobility
• Loss of physical integrity
• Difficult integration in pre-/school/job
• Limited leisure activities
• Dealing with altered body image, fear of permanent consequences, lasting impairments
• Sudden change in overall life circumstances, lifestyle restrictions
• Social isolation
• additional socio-economic burdens

5 Mental health state

• Healthy processing
• Persistent stress reaction: Symptoms do not exceed the expected level in manifestation, degree and duration
• Mental disorder: Acute stress reaction F43.0, post-traumatic stress disorder F 43.1, adjustment disorder F43.2; other emotional, affective, or social behavior disorders, e.g., anxiety disorder, depressive episodes, somatoform disorders, eating disorder, etc. Symptoms considerable and exceed the expected level in manifestation and degree
• Complex correlations possible! (1 → 3 → 4 → 5; 1 + 2 → 5; 1 → 3 → 5)
• Differential diagnosis! → Bio-psycho-social treatment plan

Sources: Schröder, 2019; Cheung, 2018; Kahallery, 2020; Krull, 2018; Wiener, 2015. © Leiss, 2023

Material: PowerPoint slides on normative and non-normative developmental tasks

Developmental milestones – physical & psychological developmental steps

Goal: Achievement of autonomous living situation = emotional-social independence from adults and authority figures, economic independence

15-18 years

Physiological:

• puberty,
• mood changes,
• frontal brain development

Psychological:

• identity development
• desire for "normality" – being like the others
• exploring sexuality
• importance of body image
• importance of peer relationships
• create educational and vocational foundation
• starting process to become emotional-social independent
• legal milestones

Disruptions: dependence on doctors, medications, parents …; lack of participation in usual activities; Parents often find "letting go" more difficult than with healthy children

Developmental milestones – selected physical & psychological developmental steps

18-25 years

Physiological: frontal brain development completed, advanced executive function emerges, impulsiveness declines

Psychological:

• experimenting with social norms, belief systems, relationships
• creating educational and vocational foundations
• starting processes to become financially independent

25-39 years

• establish identity
• consolidating educational/vocational goals
• reaching financial independence
• formalizing romantic relationships
• starting families

Non-normative developmental tasks

• accepting physiological changes, limitations (e.g. hair loss …)
• dealing with a limited future perspective (e.g. regarding career choice…)
• enduring uncertainty about the future development of the disease
• and more…

Lack of role models for coping with non-normative developmental tasks in this age group! → Importance of Mentoring Programs

Normative and non-normative developmental tasks

• Children/AYAs have more "post-cancer years" than adults
• "normative" developmental tasks are still ahead….

→ Importance of anticipatory guidance

Developmental tasks across the lifespan: seperate from parents; deal with emotions; follow rules; make friends; learn language, cultural skills; become more and more independent in defined areas of life; deal with/accept late effects; graduate from school; find a job; build a partnership, start a family

Material: PowerPoint slides on factors that influence participation in education & employment

Source: Davis, E. L., Clarke, K. S., Patterson, P. & Cohen, J. Using Intervention Mapping to Develop an Education and Career Support Service for Adolescents and Young Adults Diagnosed with Cancer: Identification of the Contextual Factors That Influence Participation in Education and Employment.

Disrupted educational attainment

• For AYAs of school-age, cancer and its treatment disrupt school attendance up to three years post-diagnosis.
• Disrupted educational attendance is associated with reduced educational attainment, impacting employment outcomes and career development.
• Young adult cancer survivors are more likely to be unemployed or underemployed than their same-age peers and up to 50% of AYAs identified ongoing difficulties with attaining their prior education or employment goals two years post-diagnosis.

Impact on future health and wellbeing

• As education and employment are social determinants of health disruptions to participation and engagement can have a significant impact on the future health and wellbeing of AYAs.
• Being under- or unemployed is associated with reduced economic productivity, social participation, and financial insecurity, as well as poor physical and psychological health and quality of life.

Unmet need for support

• Many AYAs with cancer report an unmet need for support with acquiring and maintaining education and employment.
• Young people with a cancer diagnosis report not feeling supported to cope with the changes to their education and/or employment during treatment and difficulty accessing an education and career advisor.
• AYAs with cancer describe specific education and career support needs, including a need for information about the effects of cancer and its treatment on participation in education and employment, personal consultation on career development, and job readiness and work skills training.
• Although support from peers and parents plays an important role in educational or career attainment, AYAs described feeling better supported when they received formal support from education and career professionals, rather than informal support from parents or friends.
• Despite the evidence for the efficacy of formal education and career support, many young people report being unable to access this type of specialised professional support.
• Few evidence-based interventions developed to meet the specific needs of AYAs diagnosed with cancer

Material: Pocket Card on Education Support

The Pocket Cards on education and career support were developed under Task 3.2.1 in a working group consisting of healthcare professionals and patient advocates, and then agreed via a Delphi survey and several consensus meetings.

Education Support

Young people living with and beyond cancer may face restrictions in their education due to their disease, treatment or late effects.

What's needed?

• Surveillance and support over the entire course of education … for young people living with and beyond cancer, their caregivers, teachers & peers
• Easy access to meaningful information on all legal and practical support options
• Dedicated professionals in follow-up care with the necessary knowledge, skills and time to coordinate communication between young person/family, school and healthcare team

Find keypoints for education support on the back. Find support material in different languages on: beatcancer.eu

NORMALITY wherever possible - SUPPORT wherever needed

Our goal: education that suits abilities, personality and future plans

6 Steps to improve educational support

1. Get clear overview of personal STRENGTHS and DIFFICULTIES, e.g. through neuropsychological assessment. Cope with limitations - benefit from strenghts
2. Consider DISADVANTAGE COMPENSATION: they are particularly important if limitation in one area (e.g. memory) would lead to disadvantage in other areas (e.g. maths).
3. PERSON-CENTERED support: Use legal options and/or disadvantage compensation - tailored to individual needs.
4. Be TRANSPARENT: plan and discuss support options TOGETHER. Communicate and collaborate with all parties involved. (young person, carers, siblings, peers & teachers)
5. Provide EMOTIONAL SUPPORT: allow feelings of anxiety, uncertainty & fear of being different and make use of support.
6. Focus not only on performance, but also on a SENSE OF BELONGING and social situation; prevent bullying.

Go for it! DISADVANTAGE COMPENSATION = compensation for disease-related disadvantages to ensure equal opportunities

• Separate, quiet rooms for exams
• Extra time for exams
• Use of learning materials that support memory (e.g. mathematical formula collection)
• Reduction of tasks or homework
• Multimodal learning materials, materials for planning and structure
• Room for breaks

No favouritism, but reduction of disadvantages

Material: Pocket Card on Career Support

Let's make Career Support a priority

Young people living with and beyond cancer may face restrictions in their careers due to their disease, treatment or late effects. Very often they are under- or overestimated due to the lack of knowledge of others and may therefore end up in inappropriate work situations

What's needed?

• Continuous surveillance and long-term support in follow-up care… … for young people living with and beyond cancer, their caregivers & employers
• Easy access to meaningful information on all legal and practical support options
• Dedicated professionals in follow-up care with the necessary knowledge, skills and time resources to coordinate communication … between young person/family, workplace, healthcare team and career support providers
• Peer-support programmes

Find keypoints for career support on the back. Find support material in different languages on: beatcancer.eu

Key points on vocational support

Goal: Vocational situation that suits abilities, personality, passion and future plans

NORMALITY wherever possible - SUPPORT wherever needed

1. Get clear overview of work-related STRENGTHS & DIFFICULTIES, e.g. through neuropsychology or occupational medicine. Cope with limitations - benefit from strenghts
2. Analyse WORKING CONDITIONS to identify where adaptations can be made.
3. PERSON-CENTERED support: tailored measures & adaptations to individual needs. Consider bio-psycho-social background and PLAN AHEAD.
   • Adjustment of working hours
   • Framework conditions or type of activity
   • Provision and use of appropriate tools & aids
   • Room for rest & more…
4. Clarify LEGAL ISSUES: employment and social law.
5. TRANSPARENT: plan and discuss support options TOGETHER. Communicate with all parties involved. (young person, carers, employers, collegues, career support providers)
6. EMOTIONAL & SOCIAL SUPPORT: Focus not only on performance. Allow feelings of e.g. uncertainty, fear of being different & grieving about initial plans. Consider social situation. Prevent bullying.

Module 3: Personal factors: Reflection on education- and work related strengths and weaknesses

Goals, Methods & Materials

Goal

• Self-reflection and analysis of one's own education- or job-related strengths and weaknesses.
• Acknowledging the importance of knowing one's own strengths and weaknesses to find a suitable education or job, particularly in the case of late effects.
• Realising what can be a relevant strength in the context of education or work.

Method

• Self-Reflection/ Partner work

Materials/ content

• Examplary material for Self-Reflection

Material: Partner-Interview Self-Reflection

Train-the-trainer Education & Career Support

• Which strengths are helpful in your training/job? Which strengths can you make use of?
• Are there strengths that you cannot realise in your job/training? That nobody knows about? (general, disease-related or unrelated)

Examples of strengths: Enthusiasm, Loyalty, Creativity, Hearing, Empathy, Memory, Problem solving, Processing speed, Load capacity, Team spirit, Language, Organisation, Vision, Flexibility, Forward-thinking, Endurance, Mathematical skills, Accuracy, Attention, Logical thinking, Organisation, Multi-tasking, manual skills, Communication, Stress resistance … and many more…

• What weaknesses do you have, that sometimes make your job/training difficult?
• What exactly happens? How do you deal with the situation?
• Do your colleagues know your strengths or weaknesses better?

Module 4: Environmental factors: Analysis of school and workplace conditions & social network

Goals, Methods & Materials

Goal

• Analysing education & working conditions: facilitators and hindering factors.
• Raising awareness that environmental factors have a major influence on school/job performance and consequently must be analysed in detail and very often adapted.

Method

• Group work: What can be hindering factors in the school or work context?

Materials/ content

• Exemplary material for group work
• Flipchart
• Sticky notes

Inspiration for group work

Task: In groups of 3-4 people, hindering factors in school or at work are discussed and collected on a poster. The results are then briefly presented and discussed in the whole group.

Environmental factors: School- and Workplace conditions & social network

• School-/workplace condition
• Teacher/employer
• Family/friends/peers/collegues
• HCPs and other professionals

Where might barriers be hidden? (1) School (2) Job

Module 5: Environmental factors: Finances and legal framework

Goals, Methods & Materials

Goal

• Broaden knowledge about legal and financial regulations and challenges in the educational- or work-context.

Method

• Theoretical input
• Group discussion
• Collection of national best practice models

Materials/ content

• Flipchart
• Sticky notes
• In autumn 2024, a publication with specific information on financial and legal topics will be published on our website beatcancer.eu. Visit it regularly to stay up to date.

Module 6: Specific support options

Goals, Methods & Materials

Goal

• Learn about and discuss specific support measures and best practice models.

Method

• Theoretical input
• Group work: "Specific support options in working life"

Materials/ content

• Worksheets that deal with various possible limitations/impairments in school life, e.g. chronic fatigue or memory deficits and how to deal with them. How can the respective limitation/impairment be recognised? How can targeted support be provided?
• Task: Based on the lists in the school context, create suitable checklists for working life.

Material: Worksheet Reduced resilience/chronic fatigue

How do I recognize it?

• Difficulty getting to school on time
• Severe tiredness and exhaustion, which increases as the school day goes on
• Lack of motivation
• Increased irritability
• Impaired concentration or memory difficulties
• Frequent confusion
• Slower working style
• Less interaction with classmates
• Decreased appetite

What can I do?

• Gradual integration: Initially, the pupil returns to school for a reduced number of hours, which is gradually increased (with regeneration); preferred attendance of main subjects and favorite subjects; alternation of strenuous/less strenuous lessons; e.g. starting school only at the second or third lesson
• If necessary, maintain the reduction in lessons in the event of persistently reduced resilience
• Individual form of task setting/ performance review/assessment
• Individual organization of breaks
• Allow eating and drinking in the event of a severe "drop in energy" (by prior arrangement), e.g. chewing gum has been shown to increase alertness in the short term
• Enabling movement units and other activating measures

Material: Worksheet Limitation of the processing speed/drive

How do I recognize it?

• The pupil shows a slower working pace (generally or only for specific tasks)
• The pupil appears "lazy", unmotivated, inattentive, distracted, "obtuse", slow, sluggish, withdrawn and/or depressed
• The pupil is lacking drive and/or lacks ideas, especially during free time

What can I do?

• Variation of working times for exams/schoolwork
• Assessment and positive feedback on completed tasks instead of emphasizing what is missing
• Avoiding time pressure whenever possible, as otherwise the pupil will quickly come under pressure, "lose their nerve" etc.
• Additional signal at the beginning of tasks that it's time to get started
• Providing a structure (of the day, of tasks, etc.)
• Providing a basic structure for free work/in freely organized time or for choices, as the pupil lacks their own initiative or ideas (drive) due to illness

Material: Worksheet Limitation of attention & concentration

How do I recognize it?

• Daydreaming, digression
• Increased distractibility
• Difficulty holding back reactions (e.g. calling out answers without being called on by the teacher)
• Short attention span
• Strong fluctuations in attention during the day
• Significant decrease in ability to concentrate in the second half of the day, without regeneration/recovery after a break
• Overstrain with too many or several tasks to be completed simultaneously
• Significantly increased susceptibility to errors with increased time pressure

What can I do?

• Giving hints to make it easier for the pupil to "stay on task" (e.g. briefly addressing them, small hints, often making eye contact, asking them to change their sitting position or sit on the front edge of the chair)
• Sit at the front of the class
• Create a "low-stimulus" environment (e.g. at the seat) to reduce distraction
• Establish clearly structured reinforcement/reward systems when prolonged attention or restraint of impulses is required
• Allowing the pupil to concentrate on one task at a time
• Individually designed breaks and variation of working times

Material: Worksheet Limitation of learning & memory capacity

How do I recognize it?

• Difficulty remembering things when they are needed
• Forgetting repeatedly learned information (e.g. also routine procedures)
• Difficulty following complex and multi-step instructions
• Fluctuating memory performance - even for similar tasks
• Frequent follow-up questions
• Confabulating in the case of memory gaps (i.e. more information is recalled from memory than is stored; often unconsciously, also to hide unpleasant memory gaps); the content may appear constructed or it may appear that the pupil is making things up
• Telling the same information several times without the pupil realizing it; also no noticeable gain in content when asked
• Giving the impression that there is no learning gain (e.g. with vocabulary, when applying arithmetic operations or subject-specific knowledge)
• Recognition works better than free recall of content (e.g. the student cannot answer the open question about what was covered in yesterday's lesson, but recognizes the content in the textbook)

What can I do?

• Use simple, clear instructions
• Asking whether the student has understood and memorized the instruction
• Portioning and structuring learning content; if necessary, reducing it accordingly
• Incorporating learning and memorization strategies into the lesson, e.g. mnemonic devices, mnemonic sentences, mind maps, effective note-taking, underlining/marking core content, omitting unimportant content, etc.
• Use different materials to support the memorization process ("for all senses"), e.g. with pictures, written learning materials, highlighters, sounds, shaped letters, etc., so that functioning memory structures (e.g. visual memory) can be used making things up
• In the case of confabulation: do not make assessments of recurring content, i.e. do not correct statements each time, but leave them as they are to avoid conflicts; do not expose the pupil and seek a way of dealing with this (also with classmates and parents)
• Plan deliberate breaks between memorization, especially if the content is similar (e.g. a break between learning vocabulary in two foreign languages); ideally, alternate as many different memorization contents as possible [e.g. first memorize vocabulary of a foreign language (= verbal memory), then flags of different countries (= visual memory)]
• Providing assistance, e.g. written instructions, homework diary, checklists, clocks, memo cards, signal cards, dictaphones, calculators, etc.
• Developing routines
• Offering regular repetitions
• Reminding students of regularly occurring procedures
• Carrying out tests in multiple-choice answer format, as recognition is easier than freely reproducing memory content
• Connecting new learning content with what has already been memorized

Material: Worksheet Limitation of executive functions (e.g. ability to organize, plan and act)

How do I recognize it?

• Unstructured, chaotic and aimless way of working
• Having the impression that the pupil does not understand the task
• Difficulties:
  • making a plan (for the school day, a project or other activities)
  • thinking ahead
  • making decisions (e.g. when there are several possible solutions)
  • creating concepts
  • dividing a task into sub-problem and solving them step by step (e.g. the pupil cannot find a start; forgets the sub-problems and/or confuses the steps)
  • distinguishing relevant from irrelevant information (often insisting on unimportant details)
  • flexibly adapting solutions/behavior/rules to new situations (new situations or exceptions cause stress)
  • recognizing and correcting mistakes
  • assessing the consequences of actions

What can I do?

• If possible, provide clearly structured plans (e.g. timetables, daily plans and work plans that the pupil only has to "tick off")
• Use of planning aids (e.g. visual illustration on a large poster: noting down action steps, goals or alternative solutions)
• Structuring and portioning tasks so that partial successes are possible
• Support in the definition of (partial) goals - (written or verbal) highlighting of relevant information in tasks (especially for tests/exams)
• Conscious preperation for new situations
• Discussing cause-consequence relationships
• Prompting to check for errors

Material: Worksheet Insecure social skills

How do I recognize it?

• Socially insecure to inappropriate behavior (e.g. lack of distance)
• Lack of "perspective taking": Inability to put themselves in the shoes of others
• Good interaction with adults, but difficulties with peers (behavior seems "different"; not age-appropriate "childlike" or "pubertal", but too adult; no common topics with peers)
• Rigid or inflexible behavior
• Difficulties:
  • to correctly interpret non-verbal communication/clues
  • making new friends and keeping old friends
  • understanding abstract language (e.g. jokes, metaphors)

What can I do?

• Informing parents and (jointly) organizing support from a guidance teacher, school psychologist, school doctor, care clinic or aftercare facility
• Encouraging participation in school excursions, class trips, project weeks and other school activities
• Use of a pupil sponsor, mentor or buddy system
• Involvement of classmates, discussion with the class

Module 7: EU-CAYAS-NET recommendations for career support

Goals, Methods & Material

Goal

• Learn about EU-CAYAS-NET recommendations for career support.

Method

• Theoretical input
• Group discussion

Materials/ content

• Pocket Cards on education and career support (see Module 2 and download materials on https://beatcancer.eu/project-deliverables/)
• In autumn 2024, a publication will be published providing comprehensive information and recommendations for career support. Currently, intensive work is being done to compile all the important details. It is therefore worth visiting our website beatcancer.eu regularly to stay up to date and not miss any important information.

Module 8: Guidance aspects - Communication & attitude

Goals, Methods & Materials

Goal

• Learn about the basic principles of communication with young people with or beyond cancer.
• Developing communication skills and an appropriate attitude through self-reflection.

Method

• Theoretical input
• Role play "Respect feelings"
• Group discussion

Materials/ content

• Pocket Cards on communication (download materials on https://beatcancer.eu/project-deliverables/)
• Available guidelines on communication about serious matters

Material: Pocket Cards on Communication

Do's and Don'ts in communication

Recommendations for anyone involved in a conversation

Before engaging in a conversation with people living with and beyond cancer, ask yourself…

• How am I feeling today? Am I capable to support?
• What is my role in this person's life? What does that imply for the conversation?
• What does this person expect from me?
• If it was me, what would I want from this conversation?
• What do I know (or think I know) about this diagnosis?
• What kind of question can I ask? Do I need to ask this?

Key Takeaways

• Be curious
• Be patient
• It is ok to not know what to say (and to express that openly)
• It is ok to ask a difficult question, but give the person the space to leave it unanswered
• Accept the persons experience, not what you think it is
• Try to be comfortable with silence, non-verbal communication can also be effective and comforting

Find more information on: beatcancer.eu

Tips to improve communication

Poor communication can affect decision-making, adherence to treatment, social relationships & mental health.

What to say (Do's)

• Tailor communication: Consider individual age, cognitive development, social aspects and recognize their unique needs and abilities
• Acknowledge emotions: Be empathic, but avoid excessive empathy
• Support decision-making: Provide all information needed to make an informed decision
• Be honest and transparent: Portray information in a constructive hopeful manner

What NOT to say (Don'ts)

• Blame: "What have you done to get cancer?"
• Compare: "I met someone with cancer and he passed away"
• Impose: "You should be grateful! At least you are alive!"
• Label: "Fighter" "Hero" (There is no one-size-fits-all)
• Use toxic positivity: "Stop worrying, in a few months you will look completely normal"
• Depersonalise or minimize: "At least you do not have the most aggressive type of cancer"

Talking with young people about serious matters

Recommendations for anyone involved in a conversation

Communication about difficult topics is not something that can be avoided, but the approach and attitude can make a difference.

1. BE AT EYE LEVEL: Physically and symbolically.
2. APPRECIATE: Show willingness to enter the young persons world, try to accept their reality as they see it and hear their fears and their losses as they feel them. Appreciate their points of view - don't judge or underestimate them.
3. INVOLVE: Give young people a voice: Talk TO, not ABOUT them! Encourage age-appropriate, active participation.
4. LISTEN: Listen carefully: WHAT is being said HOW? Especially at untypical times & unexpected places.
5. ADAPT LANGUAGE: Use gentle & careful language oriented to the DEVELOPMENTAL STAGE of the young person. Consider both verbal & nonverbal communication. e.g. eye contact, personal space
6. RESPECT EMOTIONS: Take emotions seriously. Name emotions, respect them, don't minimize.
7. BE SINCERE: Young people expect honest answers to honest questions in order to build trust.
8. SHOW OPENNESS: Signal that all questions are good & welcome. Be open to discuss difficult topics instead of making them taboo. Pay attention to small signals.
9. ORIENT YOURSELF TO QUESTIONS: Be guided by questions from the young people. They naturally seek the amount of information that is right for them in order to feel safe. Don't over- or underchallenge. e.g. What do you already know? What and how much do you want to know? What exactly are you worried about?
10. GIVE SPACE & TIME: Offer a protected, age-appropriate environment. Consider attention span and give time to process. Schedule multiple sequential conversations.
11. USE TOOLS: Provide books, drawings, applications, visual models, etc. to encourage understanding and processing in order to support informed and shared decision making.
12. PLAN & ACT: Discuss concrete next steps & plan together to ensure self-efficacy and healthy coping. Give confidence & security.
13. INVOLVE FAMILY & SOCIAL NETWORK: Open communication has proven to be a protective factor for everybody involved. A trusted person can be a valuable source of support during difficult conversations.

It is okay to be overwhelmed and look for help when communicating.

Find more information on: beatcancer.eu

Module 9: Closing summary, follow up sessions, evaluation

Goals, Methods & Materials

Goal

• Evaluation of training
• Discuss open questions
• Collect and make the content available, that was generated in the training.
• Ensure possibility of future collaboration/networking of the group (for all who want to join).
• Plan focus of next online follow-up sessions (e.g. supervision, open questions, exchange of best practice models, etc.).

Method

• Group discussion

Materials/ content

• Flipchart
• Sticky notes

Further reading

• Braun, I., Friedrich, M., Morgenstern, L., Sender, A., Geue, K., Mehnert-Theuerkauf, A., & Leuteritz, K. (2023). Changes, challenges and support in work, education and finances of adolescent and young adult (AYA) cancer survivors: A qualitative study. European journal of oncology nursing : the official journal of European Oncology Nursing Society, 64, 102329. https://doi.org/10.1016/j.ejon.2023.102329
• Davis, E. L., Clarke, K. S., Patterson, P. & Cohen, J. (2022). Using Intervention Mapping to Develop an Education and Career Support Service for Adolescents and Young Adults Diagnosed with Cancer: Identification of the Contextual Factors That Influence Participation in Education and Employment. Cancers, 14(19), 4590. https://doi.org/10.3390/cancers14194590
• Dax, V., Edwards, N., Doidge, O., Morkunas, B., Thompson, K., & Lewin, J. (2021). Evaluation of an Educational and Vocational Service for Adolescent and Young Adults with Cancer: A Retrospective Review. Journal of adolescent and young adult oncology, 10(1), 56–65. https://doi.org/10.1089/jayao.2020.0009
• Devine Christen S, Mulder RL, Brown MC, Ingerski LM, Mader L, Potter EJ, Sleurs C, Viola AS, Waern S, Constine LS, Hudson MM, Kremer LCM, Skinner R, Michel G, Gilleland Marchak J, Schulte F. Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Cancer. 2022. https://doi.org/10.1002/cncr.34215
• Foster, R.H., Hayashi, R.J., Wang, M., Liu, W., Mohrmann, C., Howell, R.M., Smith, S.A., Gibson, T.M., Srivastava, D., Green, D.M., Oeffinger, K.C., Leisenring, W.M., Robison, L.L., Armstrong, G.T., Krull, K.R. and Hardy, K.K. (2021). Psychological, educational, and social late effects in adolescent survivors of Wilms tumor: A report from the Childhood Cancer Survivor Study. Psycho-Oncology, 30: 349-360. https://doi.org/10.1002/pon.5584
• Nicklin, E., Pointon, L., Glaser, A. et al. (2021). Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: "it's all the aftermath, and then you're forgotten about". Support Care Cancer 29, 6315–6324. https://doi.org/10.1007/s00520-021-06193-x
• Thompson, A. L., Christiansen, H. L., Elam, M., Hoag, J., Irwin, M. K., Pao, M., … Kelly, K. P. (2015). Academic continuity and school reentry support as a standard of care in pediatric oncology. Pediatric Blood and Cancer, 62(Suppl 5), S. 805-817. doi:10.1002/pbc.25760
• Vetsch, J., Wakefield, C.E., McGill, B.C., Cohn, R.J., Ellis, S.J., Stefanic, N., Sawyer S.M., Zebrack, B., Sansom-Daly, U.M (2018). Educational and vocational goal disruption in adolescent and young adult cancer survivors. Psycho-Oncology, 27: 532–538. https://doi.org/10.1002/pon.4525
• https://beatcancer.eu/resources/
• https://beatcancer.eu/resources/mental-health/article/bridging-the-gap-researching-together/
• https://beatcancer.eu/resources/mental-health/article/lab-book-research-together-in-junior-research-academy/

After the workshop

• Participate in our follow-up sessions
  • to collect more best practice models for education and career support,
  • to discuss concrete options for implementation of support options,
  • to reflect together on particular challenges and
  • to continue to learn from each other.
• Spread the word about the Train-the-Trainer opportunity or plan/organise your own training as a trainer in your region, institution or organisation.
• Participate in discussions and initiatives in the health and education system that could improve education and career support options.

Interested persons can also contact the Medical University of Vienna (eucayasnet@meduniwien.ac.at) or CCI Europe (office@ccieurope.eu)

About this publication

This manual was developed in Work Package 3 under the umbrella of EU-CAYAS-NET, a project co-funded by the European Union's EU4Health program (grant agreement number 101056918).

Project team

Conception, Implementation & Design:

• Ulrike Leiss, Clinical Neuro-Psychologist, Researcher, Medical University of Vienna (Project lead)
• Carina Schneider, Patient Expert, Managing Director CCI Europe (EU-CAYAS-NET Coordinator)
• Inga Bosch, Research assistant, Medical University of Vienna
• Kerstin Krottendorfer, Social Worker, Researcher, Medical University of Vienna
• Barbara Brunmair, Project Coordinator, CCI Europe
• Doris Hoffmann-Lamplmair, Researcher, Medical University of Vienna
• Jikke Wams, Researcher, Princess Máxima Center
• Hannah Gsell, Psychologist, Patient Expert, CCI Europe
• Anna Zettl, Research assistant, Patient Advocate, Medical University of Vienna
• Marie Gubi, Research assistant, Patient Advocate, Medical University of Vienna

We sincerely thank all trainees of the first EU-CAYAS-NET Train-the-Trainer workshop for their active participation, the important and inspiring discussions and the valuable feedback!

July 2024

Funding and disclaimer

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.