DK Trainers Guide

Development of Supportive Packages for Parents and Teachers of Children with Cerebral Palsy (03-18 Age Group)

Trainer’s Guide

Alternative version

Training Module

KNOWLEDGE ABOUT CP

Introduction to the module

This training module is produced in the scope of CP-PACK project and in accordance with the Need Analysis Report derived from the results of the focus group interviews and questionnaires among parents and teachers of children with cerebral palsy. This is primarily a theoretical training module, which on the basis of the latest knowledge of the brain and neuroplasticity will approach the subject in different matters. At the same time, parents as well as teachers contain a lot of valuable knowledge from practical experiences. Therefore the course should also be a place where participants (parents/parents, teachers/teachers and parents/teachers) get an opportunity to discuss and share their own practical experiences. This way participants will be inspired by each other in how to implement latest knowledge in praxis.

TABLE OF CONTENT

Goals

Improve participants’ knowledge about cerebral palsy – what it is, how it occurs and what can be done to compensate for accompanying difficulties.

1. Improve awareness of the most recent knowledge derived from research and how the brain works, the complexity of the diagnosis.

2. Improve the understanding of CP in it’s aspects of motor- cognitive- and learning disabilities.

3. Improve the understanding of the special conditions following adulthood when having a disability.

Aim

In General:

Cerebral Palsy is a condition that cannot be cured. But the brain can be trained and by that be able to work and function in a better way and by that increase the ability of learning new skills.

The aim of this module is to increase the basic understanding of CP in different aspects.

For Parents:

The parents in the need analysis, all express a general need for more knowledge about CP.

Most parents have read a bit about the subject, but apparently there is no greater inclination to pick up on the subject of CP through reading. At the same time, all informants express an extensive need to obtain a more exact knowledge about CP. For instance, most parents know that cognitive, as well as motor problems are a part of CP, but they do not seem to have a more profound understanding of this actually entails.

The road to understanding, to acceptance and to appropriate compensation for different kinds of daily challenges is lead by knowledge and insight. What does the latest CP research tell us? How does CP emerge? What consequences does it have for the child’s development? What is visible (the motor part) and what is visible to a lesser extent (the cognitive and perceptual parts)? And what are the consequences hereof regarding social participation, schooling, spare time etc.? Why is it so difficult to predict the individual child’s development in all its aspects?

Parents can only express a lack of understanding and a lack of knowledge regarding subjects they already know pose challenges in daily life. But other subjects, that research has proven to be important in parents’ participation in their child’s development, are not necessarily something that parents are specifically aware of. For instance, parents can have a huge positive impact on a child’s development by gaining knowledge on the importance of diet.

For teachers:

According to the need analysis teachers will benefit of more knowledge, especially in terms of understanding the cognitive side of CP.

Knowledge on CP in relation to cognition is vital in understanding how to give optimal support to a child with CP and it’s learning opportunities. In some schools and other institutions it is still common to perceive CP as primarily being a motor disability, instead of an impairment that, to some extent, also affects cognitive and perceptual functions.

It is a fact that a traditional way of perceiving CP (primarily a motor disability) is not an adequate foundation for the pedagogical and the teaching efforts, and then you risk an inappropriate result, since this approach has no focus on the child’s potential cognitive and perceptual challenges.

CP is a very broad diagnosis, which can result in very different individual manifestations. It can appear in different combinations and affect the child mildly or to a high extent, which makes it important for teachers and pedagogues to focus on potential problems and connections regarding CP in order to meet each individual child with the most optimal approach. This can be difficult for a teacher who may have several children with different diagnosis or difficulties, which only accentuates the importance of discussing special bearings concerning children with CP in the workplace. This goes for both normal and special institutions.

Learning outcome

Participants are informed about CP based on the most recent knowledge derived from research. This includes knowledge about CP as a brain damage and how the brain works. Viewed in the light of CP as a brain damage, participants will also be aware about the complexity of the diagnosis and the understanding of CP in it’s aspects of motor- cognitive- and learning disabilities. As such participants will know that CP occurs within the specific child in it’s own particular and personal ‘edition’, even though some traits may be common among children with CP. Also the participants will become known with other parents’ and teachers’ experiences, aquire new/different perspectives upon one own’s situation and may be inspired by others when it comes to new initiatives and actions.

For Parents:

Participants are aware that these are important issues in order to understand and meet their own child with CP and it’s individual CP related challenges in everyday life.

For Teachers

In general participants have learned that it is possible and desirable to comply with CP related challenges among the students, when it is founded on updated CP knowledge in order to identify and work with adequate pedagogical approaches, strategies and tools

Qualities of trainer(s)

In order to keep as high a standard as possible and to ensure inclusion of latest knowledge in the field of every topic taken into presentation, it is very important that the day(s) is/are taken care of by several speakers, all with an expertise in the field of which they are talking. This concluding that the role of the trainer in this module will be defined as the key figure who will be arranging the course day(s) and be responsible for identifying relevant experts/speakers of the specific topics.

The key figure of the course days will be represented by the arranging organisation and will be responsible for identifying relevant experts/speakers of the specific topics as well as being the one guiding the participants through groupwork, discussions etc. and the one responsible for taking care of involving the participants as much as possible as active partners and listeners during the course days.

Methodology

• • Lecture

  • Group work

  • Web-based information tools

  • Exchange of own experience and knowledge among participants

Educational environment

A meeting room/conference room during the lectures / presentations, as well as physical interiors appropriate for group work, case studies, workshops, drama, etc. Also, a projector connected to a pc, a screen, a flip chart and internet access. Where needed there must be extra pcs with internet access, video and audiovisual equipment, board and/or special equipment/assistive devices.

Time needed

2 days from 09.00 a.m. to 04.00 p.m. / 08.30 a.m. to 04.30 p.m.

Suggestion for program

DAY 1

09:00-09:45 Coffee and Welcome

09:45-10:45 General knowledge about CP

General knowledge about the brain and neuroplasticity

10:45-11:00 Coffee break

11:00-12:00 Training and learning based on neuroplasticity

12:00-13:00 Lunch

13:00-14:45 a. Group discussions/group work on the topics 1-3

14:45-15.00 Coffee break

15:00-16:00 Food – the importance and effect related to neuroplasticity

DAY 2

08:30-09:00 Welcome – questions from yesterday

09:00-09:45 Behaviour and cognitive difficulties, the aspects according to CP and compensation-strategies

09:45-10:30 Most common cognitive and behavioural problems and strategies for compensation related to CP

10:30-10:45 Coffee break

10:45-12.30 a. Group discussions/group work on topic 5

12:30-13:30 Lunch

13:30-14:15 Pain/pain management – how to deal and compensate

14:15-14:30 Coffee break

14:30-15:30 Aspects of developing into adulthood, what is special concerning CP and other disabilities when growing into adulthood and getting older

15:30-16:30 Evaluation and goodbye

Session 1

General knowledge about CP

Duration ½ hour

Goals and Learning Outcomes: The participants will know the latest definition of the diagnosis “cerebral palsy” and will understand the condition as a brain lesion which cannot be cured. The participants will know the etiology of the diagnosis and they will know about the wide range of symptoms that are possible consequences of the brain damage.

Methodology:

Lecture

Group work, combining session 1, 2 and 3 – read more below session 3: The effect of training…

In the booklet trainees will find links to extra material – reading and video talks.

Supplementary training materials:

- Computer with internet access

- Projector/beamer

- Paper

- pencils

Feedback on the session:

NOT RELEVANT

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Session 2

General Knowledge about the brain and neuroplasticity

Duration ½ hour

Goals and Learning Outcomes: The participants will as overall reach an understanding of how the brain works in circuits and how these are not static or rigid, but quite reverse and they will understand the consequences of this knowledge in relation to how to address the symptoms of Cerebral Palsy.

Methodology: (including how to use the training booklet)

• • Lecture

  • Group work, combining session 1, 2 and 3 – read more below session 3: The effect of training…

  • In the booklet trainees will find links to extra material – reading and video talks.

Supplementary training materials

• • - Computer with internet access

  • - Projector/beamer

  • - Paper

  • - Pencils

Feedback on the session:

NOT RELEVANT

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Session 3

Training and learning based on neuroplasticity

Duration

1 hour

Goals and Learning Outcomes: The participants will know which theoretical aspects must be taken into consideration, if any remaining and positive results from training shall be expected. On the basis of this participants will learn about ideas and tools of how to implement training in many everyday activities at home and in school/institution.

Methodology:

• • Lecture

  • Group work, combining session 1, 2 and 3 – read more below session 3: The effect of training…

  • In the booklet trainees will find links to extra material – reading and video talks.

Supplementary training materials:

- Computer with internet access

- Projector/beamer

- Paper

- Pencils

Feedback on the session:

NOT RELEVANT

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Session 4

Food - the importance and effect related to neuroplasticity

Duration 1 hour

Goals and Learning Outcomes: Increased awareness on dietary effects on the brain and practical advise on implemetation of a healthy diet.

Methodology:

Lecture

Reflective questions that may be used are provided in the booklet

Supplementary training materials:

- Computer with internet access

- Projector/beamer

- Paper

- Pencils

Feedback on the session:

NOT RELEVANT

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Session 5

Behaviour and cognitive difficulties and compensation strategies in relation to CP

Duration ¾ hour

Goals and Learning Outcomes: Participants will gain knowledge about the sensory processing process and how it can affect a child with CP when sensory processing does not work optimal. In addition, participants will gain insight into some of the compensatory strategies that can be used and integrated into daily life. The participants will learn about arousal and self regulation and the will even get an idea of which compensatory strategies they use themselves when they need to focus on a task.

Methodology:

Lecture

Exchange of own experience and knowledge among participants

Supplementary training materials:

- Computer with internet access

- Projector/beamer

- Paper

- Pencils

Feedback on the session: NOT RELEVANT

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Session 6

Most common cognitive and behavioural problems and strategies for compensation related to CP

Duration ¾ hour

Goals and Learning Outcomes: Participants will become aware of how learning problems arise from individual cognitive problems but emerge in particular social settings and learning environments, where they are shaped by the organisation of the learning activities and the presence or absence of the right support of the child.

This session will cover the relations between the brain lesions associated with CP, the most common cognitive problems and how they are expressed as learning and behavioural problems that need to be addressed by teachers and parents in corporation. Participants will acquire up-to-date knowledge about typical cognitive problems associated with CP drawing on recent, relevant empirical studies. Explanations of cognitive problems should cover both characterisation according to theories of cognitive psychology and behavioural manifestation. The explanation about typical cognitive problems needs to be completed in the first half of the session.

The last part of the session covers how the learning problems experienced by many children with CP arise from a mismatch between the child and its learning environment. The learning/teaching approach is important in moving barriers for learning out in the relation between the child and the learning environment.

Goals and Learning Outcomes:

The participants will increase their knowledge about pain, it’s complex, psychological nature and how different elements influence the experience of pain. This knowledge will make it easier to understand the specific child’s experience and the way it handles the pain.

Also the participants will know something about complementary treatments as well as how they themselves will be able to influence the way the child will cope with pain and by that help the child in decreasing the feeling of pain.

Methodology: Lecture including Powerpoints (is to be found in the booklet)

Pain figure and pain thermometer (is to be found in the booklet as well as can be found on pp. 118 and 119, following this link: http://www.dpf.dk/Item.aspx?Department=5&Category=23&Item=3412

To some children it may be relevant to draw the pain in a pain figure. This way the pain may become more concrete and may more easily be shared with parents and other adults. Sometimes it may also be of relevance to use a pain thermometer.

Resource chart (is to be found in the booklet)

Each specific family and teacher will benefit from brainstorming on a resource chart, considering what will help when the child is in pain. It is advisable that the child itself participate in filling in the resource chart, if possible.

Supplementary training materials:

- Computer with internet access

- Projector/beamer

- Paper

- Pencils

Feedback on the session:

Not relevant.

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Session 8

Aspects of developing into adulthood, what is special concerning CP and other disabilities when growing into adulthood and getting older

Duration 1 hour

Goals and Learning Outcomes:

The participants will know the importance of acceptance of the disability in order to be able to live an adult life as an active member of society. The participants will know which implications growing up with a physical disability is threatening the mind and the physical and biological body.

The participants will learn – inspired from a discussion in the group – how these threats can be met before they take over.

Methodology: Lecture

In the booklet trainees will be able to find suggesting for extra reading.

Supplementary training materials:

- Computer with internet access

- Projector/beamer

- Paper

- Pencils

Feedback on the session:

NOT RELEVANT

Evaluation of the trainees – possible strategies to accomplish this – NOT RELEVANT

Evaluation of the modules ( Portuguese partners):

 Form for trainers

 Form for trainees