Does your adult child with Prader-Willi Syndrome(PWS) liveat home with you?
Looking after someone with Prader-Willi Syndrome(PWS) is a full time job!
FamCare, a newly appointed committee of IPWSO(the International Prader-Willi Syndrome Organisation) has been established to assist and support families who are caring for their adult children with PWS in the family home.
So, please, we need your help to better understand the issues
families are dealing with!
Many adults with PWS still live with their parents in the family home. For this living arrangement to work successfully for all involved, many compromises must be made by the parents and other family members living in the home. The support of extended family members and friends is also most valuable to the well being of the person with PWS and his/her parents. Where possible, community support can also play a significant and important role in the health and well being of the person with PWS. Providing an appropriate environment for someone with PWS in all areas of their life will promote good health and longevity.
Parents or other family members, who are caring for adults with PWS living with them in the family home, are asked to complete this survey,as honestly as possible, to help us determinetheir needs and the manner in which FamCare can be most supportive. Please know your answers will remain confidential.
We will be most grateful if you would take the time to do so and return it by email to
Sincerely,
Georgina Loughnan
(for FamCare – IPWSO)
Prader-Willi Syndrome(PWS)
Family Care Survey Your country ______
1)How old is your son/daughter/relative with PWS? ______
2)Is your son/daughter/relative with PWS male or female ______
3)Are both parents living in the home? ______
If no, which parent lives in the home? ______
4)Does anyone else live in the family home? ______
If yes, how many are adults? ______
5)What is their relationship to your son/daughter/relative with PWS? ______
6)Do you have other children? ______
If yes, how many other children live at home? ______
Where does yourson/daughter/relativewith PWS fit in the family?
(eg your eldest child is child number 1) ______
7) Do you (parents) work outside the home?
Mother: Yes ___ No ___ If yes, how many days___and hours___per week?
Father: Yes ___ No ___If yes, how many days___ and hours___per week?
8)Does your son/daughter/relative with PWS work? ______If yes, how many hours and days per week? ______
What type of work do they do?
Is this a disabled persons’ supported worksite? ______Can they access food at work? ______
9) Does your son/daughter/relative with PWS attend a day program? ______
If yes, how many days___ and hours___per week?
If yes, is this an activity or learning program? ______
Please, briefly describe the program.
10) Does your son/daughter/relative participate in recreational activities in the community,
eg sport, craft, social occasions? ______
If yes, how many times per week? ______
11) Does your son/daughter/relative participate in regular physical activity or exercise? ______
If yes, please describe the type, frequency(per week) and duration(minutes) of the
activity/exercise
12) People with PWS can be very difficult to live with for many reasons. From the list below
please tick which PWS traits in your person cause stress within the family home.
Overeating
Food seeking
Arguments
Temper tantrums
Anger
Profane language when upset
Physical aggression towards (1) property
(2) other people
(3) animals
Constant chatter
Perseveration (repeating the same question/statement over and
over or getting “stuck” on an idea)
Hoarding (collecting and hiding things)
Inability to cope with change in routine
Slowness in organising oneself/complete tasks
Self-centredness (likes to be the focus of attention)
Takes other people’s money
Skin picking / self harming
Running away
13) Which of the above traits causes the most stress in your home and why?
14) Which of the above traits do you find hardest to manage and why?
15) How do the needs and behaviour of your son/daughter/relativewith PWS impact on the lives of your other children, if any?
16) Does your family experience lack of social opportunities or increased isolation due to the behaviour of your son/daughter/relative with PWS? ______
17)What strategies do you successfully use with your son/daughter/relative to manage any/someof the more difficult traits of PWS?
18) How could a committee like FamCare be helpful to you in the management and care of your son/daughter/relativewith PWS?
If We thank you for your time and openness in completing this questionnaire.Your answers will be used to gather information internationally to assist FamCare in its needs assessment.
The FamCare Committee
(for IPWSO)
FamCare parent survey (IPWSO 2012)