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IPWSO CARETAKERS CONFERENCE

IPWSO CARETAKERS CONFERENCE

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Vortragrumnien2009gesamt 090428135029 Phpapp01 Vortragrumnien2009gesamt 090428135029 Phpapp01 Presentation Transcript

  • A short review of the “FIRST PWS CARETAKERS’ CONFERENCE” in Herne, Germany, 2008 Hubert Soyer Norbert Hödebeck-Stuntebeck Timisoara, 24.April 2009
  • 150 participants From 17 countries
  • Content: Lectures
    • „ Idea, History and Vision of the conference“ Pam Eisen President of IPWSO
    • „ Liberty and PWS – Contraries or Necessities“ Leopold Curfs
    • „ Weight Management“ Constanze Lämmer
    • „ Behavior Management“
    • Janice Foster, Hubert Soyer, Norbert Hödebeck- Stuntebeck
    • General health in adults with PWS Susanne Blichfeldt
  • Content: Workgroups I. Block
    • Environmental structure of living
    • Communication with people with PWS
    • Neurological, Psychological and cognitive aspects of behavior management
    • Fitness , sports and motivation
    • Training for teachers
  • Content: Workgroups II. Block
    • Nutrition management specific for people with PWS
    • Crisis management
    • Communication between parents and caregivers
    • Environmental structure for work with people with PWS
    • Aspects of psychological work with people with PWS
  • Presentation of the results (structure)
    • Workgroups team leader
    • Nature of the problem
    • Impact on: individual, family, caregivers…
    • Guidelines for “best practices”
    • Further discussion
  • Environmental Supports
  • Karin Birkedal - Denmark Winfried Schillinger - Germany Jackie Mallow - USA Mary K. Ziccardi - USA Marguerite Rupnow - USA Workgroup team leaders
  • The Nature of the problem
    • people with PWS need
      • wide ranged environmental support
      • clearly defined, individual environmental support that is communicated to all involved
    • not enough residential and vocational services that provide the needed support
    • minimum standard in every setting of support required
    • collaboration of environmental supports required
  • The impact of the problem
    • Without adequate environmental support:
    • the person
      • deterioration / risk of death
      • lack of psychological stability
    • stress for family unit and caregiver possibly resulting in poor choices and burnout
    • health system
      • misdiagnosis and misinformation presented to the treating specialist may lead to health deterioration
  • Guidelines for best practice
    • Family like environment – own space
    • Choice of vocational opportunities with supports
    • 24 hour supervision
    • Meals
      • formaly managed and structured
      • diet plan everyone involved knows
    • PWS specific environment
    • Exercise
  • Guidelines continued
    • Structured plan for the day developed with input of the person with PWS
    • food, money, medication managed by caregivers – house rules
    • taking weight at least once per week
    • community involvement with environmental supports
    • individual behavior management plans
    • caregiver training
    • familiy involvement
    • Relationships and sexuality with support and education
  • Unanswered questions Issues outside consensus Challenges for future consideration
    • Self-determination- what does this mean for someone with PWS
      • living arrangements
      • Job, spare-time / hobbies
      • friendships, relationships and sexuality
      • nutrition and weight
      • health
      • assistance / support
    • 2. Legal guardianship
  • Communication with Persons with PWS
  • Workshop team leaders Anne Ogden - USA Linda Gourash - USA Steve Drago - USA Andreas Bächli – Switzerland
  • Nature of the Problem
    • Persons with PWS
    • Communication includes listening, talking, facial expression, tone, body language, written communications. There can be difficulties in all of these areas.
    • Difficulties with speech production can lead to “listener fatigue, frustration or misunderstanding.
    • Language skills deficits
    • Cognitive Deficits sometimes language skills lead us to overestimate their real understanding if their concreteness and capacity for fantasy is not taken into account.
    • Cognitive rigidity: Persons with PWS may have a fixed idea or have great difficulty moving from topic to topic
    • Emotional dysregulation
  • Nature of the Problem
    • Facts or fiction?
      • Telling the truth as they understand it
      • Getting out of trouble
      • Triangulation/manipulation
      • Confabulation : Sometimes persons with PWS tell fantastic stories for no apparent reason
    • Persons with PWS can be very anxious or frustrated as a result of communication problems
    • Frustration and anxiety can lead to self injury, severe and prolonged tantrums, aggression
    • Persons with PWS can be unhappy and ashamed when they do not feel proud of themselves, when people are angry at them
    • Impact of Communication Problems on the Caregiver
    • Caregivers are also subject to frustration when communication is poor. If persons with PWS are successful in manipulating or triangulating staff, conflicts among staff can take place
    • Caregivers must provide much of the energy and motivation and constantly set limits. They must therefore communicate constantly in a positive way which is very fatiguing
    • Person with PWS may calm and appear to forget an angry incident very quickly while caregivers may need more time to recover from their emotions.
    • Caregivers may need assistance to learn to recover from intense experiences after emotional outbursts or insults or aggression
  • Guidelines for best practices
    • Staff should be trained in active and diagnostic listening
    • They should show concern without being emotionally reactive. Caregivers must be on guard against not making the client feel scolded or shamed
    • Care givers should learn to listen without agreeing or disagreeing
    • Caregivers may need to allow extended periods of time to gradually redirect false beliefs and look for opportunities to provide for the emotional needs with other positive but realizable experiences
    • There is agreement on the value of proactive communication. It is necessary to chose the timing and the opportunity to communicate important information
    • Proactive communication includes teaching coping skills and scripts to help the person learn in advance ways to be disappointed and angry and to ask for help or to take action to calm themselves down
    Guidelines for best practices
    • Schedules can establish expectations and avoid disappointments.
    • Persons with PWS benefit from many verbal reminders and frequent praise.
    • Caregivers should learn how important their choice of words can be. In particular person with PWS may overreact to negative statements or the word “no”. It is a skill to learn to turn a No statement into a positive statement.
    Guidelines for best practices
    • Caregivers must be trained on how to communicate during emotional outbursts
    • Proactively, clients can learn from rehearsing how to cope when they are angry by practicing words and actions that will be acceptable.
    • Counseling can help clients to distinguish their own emotions
    • Care givers must be trained on the importance of their tone of voice
    • Using humour is a valuable strategy to defuse a tense situation. Sarcasm is never appropriate.
    • Caregivers must work in a supportive team model with frequent communications among the team members to prevent misunderstanding and manipulation leading to inconsistency
    Guidelines for best practices
  • Further discussion:
    • Assigning one or more staff persons to each client with the function conveying all important communications; this has been helpful in some circumstances and problematic in others
    • How much venting is acceptable? When does a rant or a tantrum without property destruction or aggression require intervention only because of the noise level and duration?
    • How much choice can people handle may depend on how much time they have to consider it. This may be true even of low importance choices.
    • Best practices for talking about food.
  • Neurological, Psychological and Cognitive aspects
  • Workshop team leaders
    • Janice Forster – USA
    • Hubert Soyer - Germany
    • Tony Holland – United Kingdom
    • Renate Schafenberger – Germany
    • Michael Schilder - Germany
  • What are the issues ?
    • Managing the tension between encouraging and supporting autonomy vs vulnerabilty of people with PWS
    • Eating behavior
    • Sexual behavior
    • Self-injury
    • Risk for exploitation and abuse
  • Nature of the Problem
    • Overeating and life threatening obesity
    • Repetitive and ritualistic behaviors
    • Increased liability to anxiety/mood disorder and psychotic illness
    • Stress sensitivity
    • Skin picking
    • Awareness for mental health problems
    People with PWS have unique neuropsychiatric vulnerabilities that put them at risk for maladaptive behaviors and mental health problems
  • Nature of the Problem
    • People with PWS have unique neuropsychological strengths
    • Long term memory
    • Visual processing
    • Shape discrimination
    • Attention for preferred activities
  • Nature of the Problem
    • People with PWS have unique neuropsychological strengths and vulnerablities:
    • Short term memory deficits
    • Deficits in dichotic listening
    • Cognitive inflexibility
    • Fine motor deficits
    • Sensory perception/integration problems
    • Deficits in simultaneous processing
    • Poor time sense
  • The impact of the problem
      • the person: difficulty with social relationships
      • the family: need for support/information
      • the care-givers: supervision, training, burn-out
      • the provider (structure and organization of care): Provide stable, life-long programmatic stucture
      • the system of care (medical, psychological therapeutics, education, legal): need for informed decision making
  • Guidelines for best practices
    • Creation of a unique environment to reduce stress and risk of occurence of problems through
      • Food management
      • Proactive (forward) planning
      • Structure of a daily plan
      • Consistency
      • Informed staff support (trained & counselled)
      • A person to talk to…
      • Low expressed emotion
      • Provide interesting and meaningful activities
      • Relaxation
  • Guidelines for best practices
    • Access to appropriate care:
      • Early diagnosis of PWS
      • Support for families with information from informed sources and from other parents
      • Individual evaluation by a professional who has experience working with people with PWS
  • Guidelines for best practices
    • Individual evaluation of mental health issues considering the persons life experience and developmental stage
      • Access to appropriate mental health care
    • Rubric for capacity or competency
      • Work with individual to gain cooperation and consent
      • Family involvement can assist decision making (gentle persuasion)
      • If refused, then consider evaluation realizing that competency could be in some life areas and not in others
  • Guidelines for best practices
    • Appropriate food management is not only essential for weight management but also helpful for mood and behavior hygiene
    • Behavior Program issues
      • Do not use food as a reinforcer
      • Do use enjoyment of competition as a motivator
      • Individualization according to person
      • Use of pictures to enhance learning
      • Use of contracting
  • Fitness, sports and motivation
  • Workgroup team leaders
    • Georgina Loughnan - Australia
    • Dr. Greg Cherpes - USA
    • Tina Silvast - Finland
  • Nature of the problem
    • The high importance of exercises
      • Not only for weight control and weight loss
      • Also for:
        • Muscle strength
        • Cardiorespiratory efficiency
        • Increasing matabolic rate
        • Treatent of comorbidities (diabetes, hypertension, sleep apnea)
        • Enhance overall well-being (endorphin release)
  • Nature of the problem
    • Motivation (-problems):
      • The start
      • Low exercise tolerance levels initially
      • Body image
  • Nature of the problem
    • Other aspects:
      • Obesity before exercise program is initiated
      • Population ages (impact of exercises, lack of exercises)
      • Concentration of food intake as the only way of weight control
  • Impact on the individual
    • Impairment of quality of live
    • Potential accessability issues (family, workplace, social environment)
    • Recognize the health benefits not before but after te exercise
    • Resistance against an exercise program
  • Impact on family
    • Limited resources for holding exercises
    • Exercises dealing with tantrums, arguments, possibly acting
    • Needs to be stressed by health care providers
  • Impact on the care-giver
    • Presence of the care-giver during the exercise
    • Level of fitness and the attitude toward exercise of the care-giver
    • Motivation of the care-giver
  • Impact on the provider
    • Use structured exercise only
    • Reserve time to engage in exercise
    Impact on the system of care
    • Significant cost association and obesity
    • Significant loss of productivity and obesity
  • Guidelines for best practice
    • Pre-exercise assessment
    • Involve the individual by making and changing the plan
    • Exercises prior to a meal or snack
    • Start (depends on the current ability) with minimum 10 minutes (walking)
  • Guidelines for best practice
    • 5 – 6 days per week
    • 30 – 40 minutes continuous
    • Routine part of day
    • Home based exercise (best way of ensuring consistent participation)
    • Increase of intensity
  • Guidelines for best practice - motivation
    • Enthusiastic care-giver
    • Individualized motivation –
    • use frequent praise and provide encouragement, photographs, diary, waist measurement as fitness records
    • Do together (companion)
    • Positive reinforcements
  • Further discussion
    • Research on physiological effects of exercises by PWS
    • Define minimal standard of available equipment
    • Ensure time for exercise
  • Training for teachers
  • Workgroup team leaders
    • Barbara J. Goff - USA
    • Linda Thornton – New Zealand
    • Jeff Covington - USA
  • Nature of the problem
    • Educators rarely receive training in educating children with low incidence disabilities – like PWS
    • This provoces often conflicts between the school personnel and the families and the individual
  • Guidelines for best practices
    • There must be an ongoing communication between the children, the family, the teacher and other team members of the school
    • There must be an ongoing support for the children, the teachers and the families
    • Socialisation with peers
  • Guidelines for best practices
    • Inclusion in community through work experiences
    • Research
    • Teachers need special trainings!
  • Guidelines for best practices - teachers training by B.J. Goff -
    • Contents:
      • Medical overview
      • Psychological and behavioral challenges
      • Developmental stages (normal/PWS)
      • Cognitive and learning profiles
      • Teaching and behavior strategies and skills
      • Preparing the children for her/his future
  • Further discussion
    • What is the best environment (associations mainstream or special schools)
    • Who provides the training (the role of the PWS assoiations?)
    • What happens after school is finish
    • International network for teachers (PWS)
  • Nutrition management in PWS
  • Workgroup team leaders
    • Constanze Lämmer - Germany
    • Susanne Blichfeldt – Denmark
  • Nature of the problem
    • PWS needs lifelong diet based on BMI
    • Higher costs for healthy food
    • Staff or family often not enough educated
    • Often not enough communication between them who prepare the food and the people who knows about the special diet recommendation
  • Nature of the problem especially in group homes
    • Management of different meal sizes
    • Different ways of food management in the grouphome and in the family
    • Not enough communication about this different ways between the care-givers and the families
  • Impact on the individual
    • They need (more) information about their own disease – about the diet
    • They want to be informed about decisions
    • It is important for them to feel safety about the food
    • Massiv overweight is a risk
    • Also the „ups and downs“ (at „holidays“)
  • Impact on family
    • Feeling of helplessness and lost of control about the diet
    • They need ongoing education about the special needs of the individuals
    • Need of continuous contact to a dietican
    • Need of a daily plan for activities to take away the focus on food
  • Impact on the provider
    • Offer workshops for the care-givers: food, special recipes, preparing
    • Offer of weekly meetings for the staff: PWS, food, health issues
    • Costs of the food for pws is often higher than planed
  • Guidelines for best practice
    • Families/ staff must have differentiated Informations about:
      • food
      • Daily management of food
    • There must be a good communication between all involved persons for a good management :
      • The person with pws
      • The family
      • The caregiver
      • The system of care in general
  • Guidelines for best practice
    • The system of: RED – YELLOW – GREEN Diet
    • Food is divided into special categories – makes the administer of food easier for Families or caregivers
    • Importance of food security
    • Individualized diet
  • Crisis management
  • Workgroup team leaders
    • Janice Forster USA
    • Mary K. Ziccardi USA
    • Greg Cherpes USA
    • Evan Ferrar USA
    • Norbert Hödebeck-Stuntebeck - Germany
  • Nature of the problem
    • Definition:
    • „ A crisis is a situation of risk for health and safety“
    • Crisis characteristics:
    • Is a part of everyones life
    • Is a learning opportunity
    • Is between the person and the care-givers
    • Depends on the psychological development of the person due to stress
    • Have a healthy role in organizing the system of care
  • Impact on the individual
    • The person needs security and trust that the care-givers
    • will provide support and assistance during the crisis
    Impact on family Needs security that the person will experience the safest possible environment
  • Impact on the care-giver
    • For the care-giver a crisis:
    • Is exhausting
    • Is a heightend state of arousal
    • Is a body tension
    • Makes a feeling of helplessness
    • The response of a care-giver has to be:
    • Clear
    • Focused
    • and in a neutral emotional way
    • The care-giver needs:
    • Necessary resources to resolve the crisis
  • Impact on the provider
    • Crisis produce:
    • Staff burn out
    • Injury
    • cost
    Impact on the system of care
    • Crisis:
    • Exhaust community supports
    • Makes the community unfamiliar and inexperienced
  • Guidelines for best practices
    • Top priority : protect the person, the staff and others from harm
    • Accept that crisis will arise – reduce the frequency and intensity
    • Care-givers: stay calm - think before acting - know what to do – be self-reflect
    • Train the care-givers
    • Care-givers should be able to give security and „unconditional love“ to the person
  • Guidelines for best practices
    • 6. Existing of a team concept
    • 7. Reflecting a crisis with the person to find out
    • reason – so they can learn
    • 8. Advanced planning as a strategy for prevention
    • 9. Acceptance of the administration about the seriousness and challenges in working with PWS
    • 10. Differentiated support of the care-givers
  • Further discussion
    • Cultural differences in expectations for the use of physical restaint.
    • Are people with PWS accountable for their behavior?
    • Build up an international on-line support network for care-givers.
  • Communication between cargivers and families
    • Barbara J. Goff Ed. D. – USA
    • Dr. Jorgelina Stegmann – Argentina
    • Anne Ogden, LMSW – USA
    • Jeff Covington – USA
    • Jackie Waters – United Kingdom
    Workgroup team leaders
  • Nature of the Problem
    • essential for the caregiver community to understand the unique circumstances of the PWS family
    • great stress on the family with PWS
    • imperative to establish a trusting relationship with families
  • Guidelines for best practices
    • Training for caregivers on building effective relationships with parents
      • listening skills
      • empathy skills
      • ways to involve parents with services
      • how to provide help for parents to deal with bureaucracy
      • understand and appreciate the needs and concerns of the individual at different developmental stages
  • Guidelines for best practices
      • how to educate parents about realistiv expectations about what providers can do
      • understanding the parents can not always provide/do as caregivers e.g. home visits
      • how to support the individual with PWS and the parents to live separate lives
      • the importance of proactive and routine contact and suggestions on how to ensure this occurs
  • Guidelines for best practices
      • how to establish and maintain boundaries
      • clarification of appropriate conduct/contact between caregivers and parents
  • Guidelines for best practices
    • development and communication of mutual realistic expectations between parents and caregivers
    • consideration of the analogy of the parent/caregiver relationship as a marriage with the child with PWS as the center
    • the staff must be trained in a variety of disciplines to effectively provide support and services
  • Further discussion
    • recognition and financial support for caregivers to provide necessary support to families in order to effectively serve the individual with PWS
    • consider that caregivers need additional outside assistance to effectively support the parents
    • development of training curriculum for caregivers about working with families
  • Environmental Supports for work with people with PWS
  • Dorthe Pedersen - Denmark Renate Scharfenberg - Germany Marguerite Rupnow - USA Dr. Hubert Soyer - Germany Jackie Mallow - USA Workgroup team leaders
  • The Nature of the problem
    • people with PWS are put into work environments that are unprepared for their unique needs
    • individuals with PWS are often limited by their employer due to his limited education on PWS and not given the chance to explore different work opportunities
  • The impact of the problem
    • Without adequate environmental supports
    • The Person
      • lack of personal funds
      • no sense of purpose
    • The family
      • emotional and financial stress
      • loss of hopes and dreams
    • Stresses the caregiver leading to poor choices and risk of burnout
  • The impact of the problem
    • Without adequate environmental supports
    • The provider
      • negative image
      • may reflect future growth
    • The system of care
      • quality of care will be compromised if all areas of support are not working together
  • All guidelines should take in account the assessment of the individual to assure health and safety to promote quality of life. The individual’s opinion should be taken into account when following these guidelines whenever possible. Communication needs to be ongoing between all individuals involved in the person’s care in order to be achieve success. Guidelines for best practices
  • Guidelines for best practices
    • Individual Assessment
      • Hopes and Dreams of person with PWS
      • Skill assessment
      • Performance testing/competence testing
      • Goal driven
    • Integrated/Inclusion Programs
      • Training and educate on how to accomplish
      • Assistance in “Translation” for a person with PWS in the area of social matters
      • View it from the PWS perspective
  • Guidelines continued
    • Food Security
    • Behavioral and Emotional Supports
      • Stress reduction
      • Conflict resolution
      • Preventative actions
    • Opportunities for Recreational Activities
    • Specific PWS training in
      • Characteristics of PWS
      • Medical concerns
      • Food security and management …
    • Personal Growth and Development
  • Guidelines continued
    • Health Supports
      • Medical Alerts, Medical Crisis Plan, Therapies
    • Rules and Expectations
      • Must be clear and consistent
      • Use visual aides to convey
      • If changes occur process in advance of change
    • Structure
      • Transition schedule
      • Be aware of sensory overload
  • Further discussion
    • Limited number of choices and opportunities for individuals with PWS due to…
      • Limited of programs/workshops/employment
      • Limited locations
      • Poor personal resources
      • Lack of funding
      • Limited government understanding
    • Ongoing growth in area of employment opportunities for individuals with PWS
  • Psychological aspects
  • Worksgroup team leaders
    • Irune Achutegui - Spain
    • Palma Bregani - Italy
    • Linda Gourash - USA
    • Leopold Curfs - Netherlands
    • Tony Holland – United Kingdom
  • Nature of the problem
    • The role of psychologists is undefined and varies from organisation to organisation
    • Roles can be:
      • Psychological testing
      • Educating (Individuals, Families, school personnel, workplace personnel)
      • Research
      • Part of the clinical care
    • No literature
  • Impact on the individual
    • The psychologist as the individual therapist
    • Advocat of the individual´s view against others
    • Provides behavioral programming
    • Interprets the (emotional) behavior
  • Impact on the caregiver
    • Psychologist as the supervisor
    • Psychologist as the trainer of the caregivers
    • Psychologist as an external employee or an in-house member of the treatment group
    • Providing emotional support to caregivers during or after crisis-situations
  • Guidelines for best practices
    • Involve the individual by asking them about their behavior - Support for self-management
    • Psychologists must be able to have a professional distance to the disruptive or offensive behavior („Love the child and change the behavior“)
    • Have a primary role in direct supportive councelling or therapy to the individuals
    • Psychologists have to provide emotional support to the individual, the families and the caregivers
  • Guidelines for best practices
    • Understanding behavior is the key to change behavior
    • Psychologists facilitating the communication in crisis situations
    • Intervention strategies:
      • Identify sources of anxiety and stress
      • Developing coping strategies
      • Relaxation techniques
      • Rehearsing asking for help
      • One to one in crisis situation
      • Positive verbal encouragement and praise
      • Time out (positive and negative aspects)
  • Further discussion
    • Identify and clarify the role of the psychologists in the care of people with PWS
  • www.pws-caretakers-conference.de