HUNTINGTON SOCIETY OF CANADA Survey of Families and Individuals

HUNTINGTON SOCIETY OF CANADA
Survey of Families and Individuals

We need your input. The Huntington Society of Canada has initiated a national review of its services in order to ensure that we can continue to meet the needs of our clients in an efficient, effective and sustainable fashion. Your views as an individual or family member affected by Huntington disease (HD) are important to the study, and will help us shape the nature and direction of our future services.

Please complete this questionnaire no later than Monday, August 29, 2005. Questionnaires are sent directly to the external consultant, so you can be frank and honest in your replies.

If you are unsure, or don't know the answer to a particular question, simply leave that item blank.

The first question deals with your perceptions of the overall system of services and supports for individuals and families affected by HD. Please indicate your level of agreement or disagreement with each of the following statements:

	Agree Strongly	Agree Somewhat	Neutral	Disagree Somewhat	Disagree Strongly
I can get all the information I need about HD
I am usually referred to the right people at the right time
The wait times for services is too long
The services available do a good job of meeting my needs
Services are responsive to my changing needs
My family and I have lots of say in decisions about my care
Doctors and other health care providers have a good knowledge and understanding of HD
There is good coordination among the various organizations and individuals that provide services to me

A number of potential obstacles or barriers to individuals and families accessing services for people with HD are listed below. Indicate the extent to which each of these are a problem for you:

	Not at all a problem	Not too much of a problem	Somewhat of a problem	A large problem
The hours that supports or services are available
The geographic location of where the services are provided
Transportation (the ease at which you get to the services)
The financial cost or out-of-pocket expenses to individuals and families
Language or cultural differences

Have you encountered any other obstacles in accessing services?

Yes --> please specify below...

A list of services offered by the Huntington Society of Canada (HSC) appears below. Which three services are most critical to meeting your needs now and in the immediate future?

Check only three.

Information/education about HD
Advocating on behalf of individuals or families
Counselling and support
Crisis intervention
Information/referral to community services
Support/discussion groups
Day activity programs
Annual camp programs

Are there any other necessary services or supports that the Huntington Society should be offering?

Yes --> please specify below...

In general, how satisfied have you been with the services offered by the Huntington Society of Canada?

Very satisfied
Somewhat satisfied
Not too satisfied
Not at all satisfied
Have not used any HSC services

If you could change one thing about the services offered by the Huntington Society, what would that be?

Aside from the Huntington Society, where else do you go to get help with HD?

Check all that apply.

Your family doctor
A counsellor other than one from the Huntington Society
Neurologist
Geneticist
Placement staff from a long-term care facility
Other (please specify)

Please provide the following background information:

Are you:

An individual with HD
An individual at risk of HD
A family member or other caregiver

Was this questionnaire completed by the above respondent or by someone else?

Respondent
Someone else on behalf of respondent

Province:

Thank you for your cooperation.