“Curricula Prader-Willi-Syndrome” Diakonische Stiftung Wittekindshof
Dr. Norbert Hödebeck-Stuntebeck Copenhagen, October 2013
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Diakonische Stiftung Wittekindshof
ABOUT THE TRAINING PROVIDER
Bad Oeynhausen, Germany • • •
• • • •
www.wittekindshof.de/pws
Founded 1887 by a lutherian priest Focus: people with mental handicaps of all age 100 years concentrated in some region of North Rhine-Westphalia, Germany Today more than 3500 people with different handicaps More then 3500 employees taking care of them At more than 60 cities and towns in North Rhine-Westphalia 68 places for people with PWS (11 to 50 years) at 4 locations in groups of 2 or 4 or 6 places
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING PROVIDER 1887 - 1990
Concentration on only some locations over the first 100 years
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
1990 - 2013
Today we have more than 65 locations over North Rhine-Westphalia
“Curricula Prader-Willi-Syndrome”
ABOUT THE TRAINING FACT SHEET
Diseases or Therapeutic Domain • •
Children, youth and adult with Prader WilliSyndrome In the future also for other genetic rare diseases in a modificated format
Target Public • • • •
Educators Nurses Teachers Psychologists
• •
Staff of our institution External staff of public and private institutions
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING FACT SHEET
Format of the programme Total hours of training Nr. hours of face to face training Place for face to face training Nr. hours of eLearning Nr. hours of individual training Nr. hours of group/class training % of practical training
150 hours (14 days working in a group)
100 1. Locations in our institution Diakonische Stiftung Wittekindshof 2. Institutions of the trainees
0 50 100 hours 10 to 20 participants 50% 10 to 20 participants
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING F ACT SHEET Trainers’ Background • • • •
Psychologists Nutritionist Endocrinologist Supervisor
Partners • • • •
St. Bernward Hospital, Hildesheim (Nutrition, Endocrinology) Heart and Diabetes Centre Bad Oeynhausen (Diabetes, Endocrinology) University of Duisburg-Essen (Genetic) PWS Association Germany
Trainees: all have a profession in which they were 3 years educated
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Costs and Funding
ABOUT THE TRAINING FACT SHEET
Total costs of the training/person 14 (days) x 150€ (per day) = 2100€
Costs covered by participants - No costs for our own staff members - 2100€ for external Funding sources for remaining costs
Investment for the future: • • •
No funding EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
Reduces challenging behaviour Reduces the number of staff for taking care of people with PWS Reduce the absolute number of financial support
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ABOUT THE TRAINING MISSION AND OBJECTIVES •
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Staff members must be informed about the special symptoms of the syndrome for a better understanding of the individuals with PWS Understand the challenging behaviour Empowerment of the staff (supervision, etc.) Support people with PWS for a more independent life To be better prepared for contact and communication with parents Reduce the money the institution need for taking care of people with PWS
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING PROGRAMME CONTENTS Prader-Willi-Syndrome - Education course for caregivers Overview about the 10 Modules 1. Module - Introduction of the Prader-Willi-Syndrome 2. Module - Behaviour analyses 3. Module - Behaviour modifications 4. Module - Communication 5. Module - Nutrition Management by Prader-Willi-Syndrome 6. Module - Neuropsychology by Prader-Willi-Syndrome 7. Module - Case supervision 8. Module - supervised internship 9. Module - Team supervision 10. Module – De-escalation Management EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: ½ Day, 4 hours Profession of trainer: Psychologist Methods: - Presentation - Working in small groups - Exercises Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 1.Module “Introduction of the PraderWilli-Syndrome”
Content/ Description of the module • • • • •
At the beginning of this module, the genetic causes of the syndrome will be demonstrated as well as its prevalence, gender and cultural incidence. Additionally, the different physiological symptoms of the syndrome will be described which have to be considered for individuals with PWS. In the following it will be stated what actions are important in order to avoid or compensate the negative effects of these features. Besides this the cognitive features and particular variations will be presented and possible actions will be indicated. The psychological and emotional features which will be described in detail as the next part in this module represent the most difficult aspects people with PWS have in social interactions. The module concludes by demonstrating the theoretical understanding of the 'challenging behaviours' as the main problem in the social context with other people and the description of the treatment which serves as care and development from children, adolescents and adults who suffer from PWS, in the way it will be done in the Diakonische Stiftung Wittekindshof, Germany.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 1 Day, 7 hours Profession of trainer: Psychologist Methods: - Presentation - Working in small groups - Exercises Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 2.Module “Behaviour Analyses”
Content/ Description of the module • • • •
• •
Starting points of this module is the 'challenging behaviour which can be observed constantly when taking care of individuals with PWS. Introductionaly there is a discussion about the necessity and significance of behaviour analyses and about the field of application and effort in taking care of people with PWS By an example of a challenging behaviour the analyses of a behaviour in a concrete situation will be clearly demonstrated ('search questions'). Mimic, Gestures, Posture, Thoughts, Emotion The following step is the analyses of 'social conditions' (environmental factors) at that time the challenging behaviour occurs. After that the analyses of the 'previous conditions' and the effects of the generally used 'consequences' will follow. The inclusion of the biographical data (life history) as well as the development of the challenging behaviour gives further helpful and essential information in order to create an 'understandig process' of particular behaviours and initiate a behaviour modification.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 1 Day, 7 hours Profession of trainer: Psychologist Methods: - Presentation - Working in small groups - Exercises - Role playing Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 3.Module “Behaviour Modification”
Content/ Description of the module • • • • •
In the module behaviour analyses with the instruction oft he process of understanding the basis for behaviour modification will be laid. As the most important process oft he behaviour modification the prevention process will be introduced at the beginning of this module. Structural as well as personnel possibilities of prevention of critical situation and behaviours will be discussed. The concrete handling of a situation with a challenging behaviour („what to do in the problematic situation“) is another important part oft he behaviour modification process. Concrete dealings will be demonstrated and trained. The reflection of critical situations with the shown massive challenging behaviours gives people with PWS the possibility to work on a change of socially not acceptable behaviour and participate on self determent solution or work on alternative behaviour.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 1 Day, 7 hours Profession of trainer: Psychologist Methods: - Presentation - Working in small groups - Exercises - role play with video feedback Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 4.Module “Communication”
Content/ Description of the module The groundwork of communication will be presented on the base oft he theoretical understanding of Schulz von Thun. Possible ways of communication will be worked out and the level of a message with the possible levels of perception will also be presented. The method of role play gives the participants in further progress the chance to widen or compensate their own strength and weak points in direct communication with people with disabilities as well as by discovery and practical exercise and instruction. Main situations of the role plays are critical parts in communication and the communication in problematic situations.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 1 Day, 7 hours Profession of trainer: MD, Nutritionist Methods: - Presentation - working in small groups - Exercises Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 5.Module “Nutrition Management by Prader-Willi-Syndrome ”
Content/ Description of the module •
• • • •
To support people with PWS in different every-day-situations takes the examination with their relationship to food and their non-adequate perception of satiation. The mutual analysis with the concerned people gives an introduction into the problematic nature in which their individuality has to be considered and is necessary in cooperation with the team. The seminar negotiates a basic knowledge of nutrition of optimized mixed food for the every day offer of care. The participants learn about the suitable and unsuitable drinks (beverage) and food as well as the characteristics of single groups of groceries. They learn how to reduce the caloric concentration of meals and that the carbohydrate metabolism with insulin involved have great significance. The work in small groups support the transfer of knowledge into praxis. Different meals will be weight and combined orientated on calories. As well as nutrition physiological knowledge the psychological aspects of eating security and the creation of every day and „sunday-situations“ (exceptions) will be discussed. The concrete plans and their possibilities of realization will be discussed in plenary.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 1 Day, 7 hours Profession of trainer: Psychologist, Pedagogist Methods: - Presentation - working in small groups - Exercises - role play with video feedback Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 6.Module “Neuropsychology by Prader-Willi-Syndrome ”
Content/ Description of the module • • • • • • • • •
The background of this module is the genetic and epigenetic development of human beings. Especially there will be presented the process of learning on the neuronal level. In relation to PWS the hypothalamic area and the mirror neurons are the most interesting parts of the brain to understand more about the behaviour of people with PWS. Known defects of the hypothalamic area are the typical deficits in PWS. The using of this knowledge in the all day care with people with PWS follows the goal of increasing the number of synaptic connections in this special brain areas. Exercises to train this development are coming from: - kinaesthetic - change of perspective - communication In role plays the participants will be trained in this themes.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 1/2 Day, 4 hours Profession of trainer: Psychologist Methods: - working in plenary - working in small groups Handout: no Location: - class-/ seminar room
ABOUT THE TRAINING PROGRAMME CONTENTS 7.Module “Case supervision ”
Content/ Description of the module • The participants introduce a person with PWS – which they are taking care of in a regular manner - by their main biographical information. • The case presentation is focused on a challenging behaviour orientated on the behaviour analyses systematic, used in module 2. • The developed hypothesis for this challenging behaviour based on the behaviour analyses, will be discussed further by the other participants. To find new perspectives of understanding and new or other ideas of handling this behaviour is the main goal of this part. • At the end the people who introduced the case, present ideas of involving the new ideas in the future of their all day care with the people with PWS.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 2 Day, 14 hours Profession of trainer: Educator Methods: working together with the professional carers in the field Handout: no Location: school or sheltered workshops
ABOUT THE TRAINING PROGRAMME CONTENTS 8.Module “supervised internship”
Content/ Description of the module •
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The main goal of the two day internship is to get an insight view into the field of live oft he clients, which the staff normally not supports (living, working, school). The knowledge of this new experiences makes the communication between the carers of the different parts of live of the clients easier. It decreases misunderstandings between the different groups of caregivers in different parts of live of people with PWS. This process support a more structured, clearer and easier to understand environment for the people with PWS and in this way it helps to decrease the frequency of challenging behaviour.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 3 Day, 21 hours Profession of trainer: Supervisor (extern) Methods: Supervision Handout: no Location: seminar room
ABOUT THE TRAINING PROGRAMME CONTENTS 9.Module “Team Supervision”
Content/ Description of the module •
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A supervisor, which is not a part of the institution, supports structural and process orientated reflections in the team. In the focus can be themes about clients with all aspects of the support. Also there can be themes about all process and interpersonal matters of the staff to develop a positive culture in the team to increase helpful processes and decrease inhibitions. One main goal is to support the communication in the team so that most of the recourses can be used for taking care to the people with handicaps. There is a fixed rhythm of the team supervision : every two year 6 sessions of team supervision.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Time: 3 Day, 21 hours Profession of trainer: Psychologist and Educator Methods: - Presentation - Working in small groups - Exercises - role play with video feedback Handout: PowerPoint sheets of the presentation Location: - class-/ seminar room for presentation and exercises - small rooms for working in small groups
ABOUT THE TRAINING PROGRAMME CONTENTS 10.Module “De-escalation Management”
Content/ Description of the module • • • • • • • •
An approved and certificated De-escalation program will be used in this module. This Program has 7 parts of de-escalation. The first step is searching for preventing aspects in the environment to decrease or stop challenging behaviour. In step two the focus lies on the self-perception of the staff and the aspects of the interaction of the staff with the people with the challenging behaviour. Step three is a check of possibilities of reasons for the challenging behaviour which lie in the person who shows this behaviour. Step four is the centre (heart) of the training programme, the method of the verbal de-escalation, which will be trained in steps and by video feedback role play. In step five and six there will be shown and trained techniques to protect against aggressive behaviour or to loose from handholds and to fixate people in aggressive situations. In the last step the focus lies on taking care after physical or psychological injury of staff members.
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING PROGRAMME CONTENTS Prader-Willi-Syndrome - Education course for caregivers Overview about the 10 Modules I. Basic Modules – the new staff have to participate in the first three month after start working with people with PWS 1. Module - Introduction of the Prader-Willi-Syndrome 2. Module - Behaviour analyses 3. Module - Behaviour modifications
II. Deepening/ immersion modules - staff have to participate in the first two years after start their of working with people with PWS 4. Module - Communication 5. Module - Nutrition Management by Prader-Willi-Syndrome 6. Module - Neuropsychology by Prader-Willi-Syndrome 7. Module - Case supervision 8. Module - supervised internship 9. Module - Team supervision 10. Module – De-escalation Management EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING CERTIFICATION AND RECOGNITION • •
A Certificate of participation will be given after participate to all 10 modules. It is the only education certificate you can get in Germany about a curricula for PWS
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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ABOUT THE TRAINING EVALUATION AND IMPACT •
We start with an evaluation in 2013
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There is no systematicaly study or survey about the programm – but a contact with a university to start this
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There is no assessement before we start – all staff members in PWS have to participate
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
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Why do we do this Programm The main principle of the Diakonische Stiftung Wittekindshof is to build up an inclusive society of people where people with and without handicaps lives together with different competences and experiences and individual support as everyone needs One basic factor to reach this goal is to have careres for people with rare deseases which are - informed - competend - and empathic
EUCERD Joint-Action Workshop Training Social Services Providers, Copenhagen, October 2013
