Embed Size (px)
DESCRIPTION
Presentation given by Georgina Loughnan at the Prader-Willi Association Ireland Annual Conference 2014. For more details, see http://pwsai.ie/annual-conference-2014/
Citation preview
Kate Beaver (crisis counsellor) USA [email protected]
Fanny Cortes (geneticist) Chile [email protected]
Sabeen Iqbal (parent) USA [email protected]
Damien Jones (caregiver manager) Australia [email protected]
Georgina Loughnan (clinician) Australia [email protected]
Rika du Plooy (parent) South Africa [email protected]
Lesley Robertson (parent) Australia [email protected]
Linda Thornton (parent) New Zealand [email protected]
PWSA Ireland Conference Dublin 2014
Susanne Blichfeldt Denmark [email protected]
John Ford New Zealand [email protected]
Janice Forster USA [email protected]
Linda Gourash USA [email protected]
Elly Scheermeyer Australia [email protected]
Jackie Waters UK [email protected]
Leopold Curfs Netherlands [email protected]
PWSA Ireland Conference Dublin 2014
• 18 questions
• Height & weight
• IPWSO & national PWS associations
• 5 languages
PWSA Ireland Conference Dublin 2014
Age
Family status
Out of home participation
PWS traits
Most stressful traits & why
Most difficult to manage traits & why
Impact on siblings
Successful strategies
How might Famcare assist?
PWSA Ireland Conference Dublin 2014
127 adults (138 returned)
27.5 yrs mean age
64 female : 63 male
73.2% live with both parents
85% have siblings, 60.6% at home
52.8% work
38.6% attend a day program
59.1% attend community recreational activities
68.5% participate in physical exercise
PWSA Ireland Conference Dublin 2014
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
PWSA Ireland Conference Dublin 2014
Food related
Anger
Arguments
Temper tantrums
Inability to cope with change
Skin picking
Perseveration
PWSA Ireland Conference Dublin 2014
Constant stress to family – perseveration/chatter
Walking on eggshells – anger/TT/mood change
Effort to maintain supervision of food
Effort to maintain routine – prevention of change
Time taken to go/do/achieve/complete anything
PWSA Ireland Conference Dublin 2014
Food seeking/ overeating
Anger
Temper tantrums
Skin picking
Inability to cope with change
PWSA Ireland Conference Dublin 2014
Constantly explaining about food
Lack of medication for behaviour
Living with constant food/life restrictions
Need for constant attention / supervision
Constant stress in home
PWSA Ireland Conference Dublin 2014
Lack of attention
Increased responsibility & at an early age
Increased caring & understanding
Reduced interaction with others / rejection
Moved away from family
Frustration & affected → very involved & loving
PWSA Ireland Conference Dublin 2014
None
Threaten / punish with food / train to feel full
Prepare for change
Lock food
Routine
Positive behaviour management
Talking & reasoning
Firmness / no arguing
Ignore behaviour → talk later
Remain patient & calm
PWSA Ireland Conference Dublin 2014
Residential services
Professional information & advice
Education from other parents
Availability of PWS specific professionals
Job / activity centres
Respite centres
Support for families
Improved societal & government awareness of PWS
???
PWSA Ireland Conference Dublin 2014
Skin Picking
Coping with Change
Healthy Adult Life
Story-telling
Health Checklist
Managing a Meltdown
PWSA Ireland Conference Dublin 2014
Promote correspondence – parent to Famcare
(local) parent to parent support
Local PWS training for parents
Local PWS training for professionals
Encourage regional parent/professional meetings
PPCB & Famcare
Future articles
PWSA Ireland Conference Dublin 2014
Find the Famcare survey on the IPWSO Website via
http://www.ipwso.org/support/famcare/
PWSA Ireland Conference Dublin 2014
![POWER SLEEVE [BB386EVO] — TL-PWS 86 — TL …...POWER SLEEVE [BB386EVO] — TL-PWS 86 — TL-PWS Is Jk9—ÄlJ— TC-PWS 86Y—JL-ey (IRA) 00 —[*13 -30 < D 0) TL-PWS < — PWS](https://img.dokumen.tips/doc/110x75/5f4dbd9d5303f80626076142/power-sleeve-bb386evo-a-tl-pws-86-a-tl-power-sleeve-bb386evo-a-tl-pws.jpg)
