The Experiences of Care Coordination for People in Western Australia Living with Rare Diseases

OPPORTUNITY TO PARTICIPATE IN RESEARCH

THE EXPERIENCES OF CARE COORDINATION FOR PEOPLE IN WESTERN AUSTRALIA LIVING WITH RARE DISEASES

The Office of Population Health Genomics (OPHG), WA Department of Health, is holding a series of focus group discussions that aim to explore the experiences of care coordination among people living with rare diseases (RD) in WA. We are currently recruiting participants for these focus groups.

Why are OPHG looking into care coordination for people with rare diseases (RD)?

OPHG are seekingtofacilitate the best possible health and wellbeing for Western Australians living with RD[1].In order to achieve this aim, promoting care coordination for people living with RD is an important action to take. To promote care coordination effectively, itis importantto consult Western Australiansliving with a RD, or who care for someone with a RD, and hear first-hand about their experiences with care coordination.A series of focus group discussionswill be held to help capture this information.

Who we plan toconduct focus group discussions with

We would like to hear from you if you:

• Have received a confirmed diagnosis of a RD (or care for someone with a confirmed diagnosis of a RD); and
• Live in WA; this includes regional and remote areas as well as the metropolitan area; and

• Are an adult living with a RD; or
• Are a Carer of an adult living with a RD; or
• Are a Carer of a child living with a RD

Also, the person with the RD (being yourself; or the adult or child you care for)

• Should require at least two health professionals to manage the RD.

What is involved?

Four focus groups will be held and they will be organised in the following groups.

• Adults living with RD or their Carers from the Perth metropolitan area
• Parents of children living with RD from the Perth metropolitan area
• Adults living with RD or theirCarers from regional WA
• Parents of children living with RDfrom regional WA

After you have registered your interest to attend, you may be invited to attend onefocus group discussion.

Each focus group willhave 10 to 12 peopleand will take place over two hours. Participants will be reimbursed for their time with a $50 gift card. The discussions will be guided by an experienced facilitator and the questionsthat will be asked during the focus groupswill range from exploring support requirements to investigating what people living with RD and their carers would like from a service or individual who provides care coordination.

If you live in metropolitan WA, focus groups will be face to face and held at the Bendat Community Centre in Wembley. If you live in regional WA, participation will be via the web and we will send you clear instructions on how to participate. Please note: you will need to be able to type (or have someone type for you) and have Google Chrome or Mozilla Firefox to participate via the web.

Dates and times of the focus groups

How do I register my interest?

If you are available at the time of the focus group relevant to you and you would like to participate, pleasesend an email to: soon as convenient.

In your email, please copy and paste the below table and answer the questions. All your answers will be kept in the strictest confidence. If you attend a focus group, it will be entirely your choice as to whether you would like to disclose any of this information. In turn, these discussions will also be confidential. This is in line with ethics approval provided by the Department of Health Human Research Ethics Committee (Reference 2016.43)

Please feel free to call the Project Coordinator, Alicia Bauskis, Senior Program Officer, Office of Population Health Genomics, WA Department of Health on 9222 6809 to ask any questions about the study and/or to register your interest.

Once you have registered your interest, The Project Coordinator (Alicia) will contact you to let you know whether a place is available for you on the study and will provide you with further information about your participation.

Thank you very much for taking the time to read this information and consider being involved.

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[1] The policy document which outlines OPHG’s commitment to improving the health and wellbeing of Western Australians living with rare diseases is called the‘WA Rare Diseases Strategic Framework 2015-18’