presentation for online support groups project

1. Tessie’s Story

2. Tessie’s Story
47 last week, happily divorced, life well and truly on track
Admin Manager with MMG Mines at Rosebery
Lives in Tullah on the West Coast of Tasmania with
partner of four years Trevor who works underground in the mines
and son Troy(14) who is in year nine at Rosebery District High School
Two Daughters Trudy (18) Studying at University in Launceston
and Trish (21) working for BP Australia in Melbourne

4. I went to see my GP after finding a lump in my right breast.
I had a mammogram and ultrasound, and then went back for the results Monday evening.
My GP said the results indicated it was probably fibrous tissue.
I saw a breast specialist the following Wednesday and I thought, 'Well, if it is fibrous tissue,
I’ll be fine', so I went on my own.

6. The specialist looked at my breast and said, 'I don't like the look of that', and took a needle
biopsy, and within 20 minutes told me I had breast cancer.
After that word.....cancer.....the rest was just black mist.
I talked about how I could get out of the car park and where I could get some change - I
didn't want to know about the cancer.
I left with a surreal feeling, an appointment for the next day and a small card.

8. Driving home I couldn’t think about it, yet I couldn’t think about anything else.
I tried to remember what the doctor had said after ‘you have cancer’.........nothing.....
Should I tell anyone, should I wait until I have more information, after all I dont want to
worry my family unnecessarily
Scrabbling around in my bag for the house keys I found the cancer council card my
doctor had given me.........

9. How can we help you today?

10. How can we help you today?
I’ve just been diagnosed Someone I know has cancer
I want to give my time I’m living with cancer
I’m worried about cancer I want to talk to someone
I’m caring for someone I want to raise money
I’m looking for something else

12. What Tessie wants How we can help
I want not to have cancer We want that too and it’s important that we don’t loose sight
of the fact that we are working every day towards a Tasmania
free from cancer. Until then we want to make things as easy as
we possibly can for you and your family.
I want information but I want to control the We will have information at your fingertips 24 hours a day,
amount of information I receive and when I 7 days a week, so when you’re ready we’re here.
receive it. It’s like I know when I feel ready to
absorb things and when I feel I can cope and I
want to be able to take advantage of those times.
I want to know what to expect from the We will have a comprehensive library of reliable information at
disease and its treatment, about treatment your disposal and written in plain english. You can read online or
timetables and schedules, services and simply save and print to read in your own time or share with
friends and family.
additional sources of information
I don’t want to feel alone all the time. I would love We understand how important it is to talk and that
to be able to talk to someone who understands no sometimes the only person you are. Our community chat
walking the same road that
that can help is someone who’s
matter what time of the day or night, someone will forum will be available 24 hours a day 7 days a week so
always respond. It’s not that I am alone, but I feel chances are, when you need to talk, you wont be alone.
alone and isolated, like I am
the only person this is happening to.

14. What Trevor wants How we can help
I was scared of getting emotional in case it rubbed We understand that it’s difficult for partners
off on her and she could see something was seriously and families and you can often feel as
though you’re ‘walking on eggshells’. We’ll
wrong, so I dealt with it the only way I knew how, by provide information to help you understand
not mentioning it and she accused me of not caring as well as tips to help you communicate.
I need information related to treatment which will We will have a support section for families and
help me support her now and in the future presented carers which will have all the information you
require in a plain english, user friendly format
honestly in a format I can understand. We’ll show you ways to reassure, deal with
decreased energy and give you information on
purposeful activities for patients.
I feel like it’s half my battle, that I’m doing half the We understand that with so much going on you can often feel
intimidated and undervalued. We will give you support tools to
fighting, but I’m not being involved in the process, I help you feel comfortable dealing with health professionals so
want to ask to be included but I don’t know how you can feel part of the team.
What I would love is if someone would come and We understand the importance of having someone to talk to
who has been through it all before. our support section for
say ‘look I’m in the same boat as you’ but I don’t families will feature a forum where you can share your
know anyone like that experience with others who are going through the same
thing.

16. What Troy wants How we can help
My mum has cancer, and I’m afraid of We’re all afraid sometimes and we’re most
afraid of things we don’t understand. We will
life without her. help you understand what’s happening and
importantly that people with cancer do survive
I try talking to my friends and it does me no As part of our support section for families and
good. They don’t understand and it seems carers there will be a place for kids to chat to
kids who will understand. We’ll also have some
like as hard as I try to explain it to them info to help your friends understand what’s happening
they never will. Sometimes I am angry, lonely and so they can be there for you.
hating life, and just want someone to be my friend.
I love footy and basketball, I feel like me again when Sometimes a different perspective is all that’s needed. If you
knew how much better Mum feels when you are having a
I play, but then I feel so bad that I should be having a good time it would make all the difference. We will have
good time when Mum is going through all this. I information that will help you understand what Mum is feeling
think sometimes I should give up sport till Mum and how you can help.
feels better.

18. What Trish wants How we can help
I am in the numb stage, Mum said not to worry but The amount of information available can be
how can I not. I went out and bought loads of these daunting information you need so it’s accessible
when you’re feeling vulnerable. We
have the
books to read and just cant seem to pick up one, to you when and where you want it.
Im just so sad.
I’m worried about Troy and Trudy, Im not sure they We understand it’s tough for families and that’s why our
quite understand what is going on, they are scared and family support section is designed for sharing so you can
work through this together whether you’re in the same
Im trying to talk them through it, but how do I talk room or in another country.
them through it if I don’t know how to talk myself
through it.
I want to go home, Mum says there is no need, how We can help you understand the disease and how your Mum
is feeling. We can help you with tools to communicate with
do I know she’s not hiding things from me , should I your Mum so that you can support her. We will demystify the
talk to her Doctor or would that be going behind jargon so that you will understand exactly what is being said.
her back, I’m so confused.

20. What Trudy wants How we can help
I don’t really want to talk to my friends about exams Of course it’s natural to want all the
and boys and drama, all i want to do is talk about information you can get and as you become
better informed you will become less
cancer, cancer, cancer. obsessed and more focused. We’ll provide you
with all the information you need when you need it.
I’m trying to keep going as normal like Mum said but I It’s normal that you’re focused on your Mum right now,
we’ll let you connect with young adults just like you who
can barely remember why I should. My future seems can help you get perspective.
so unimportant and pointless.
I'm scared. I need someone to talk to and listen to. It may well be that your Mum feels just like doing the same
I feel like throwing something against the wall and thing. We’ll help you find the best way to talk to her about
screaming but Mum would hate that and isn’t this all what you’re feeling and how you can work through it togther.
about her.

22. The facts......
Research has demonstrated that consumers are increasingly turning to the Internet for
health information and support.
✦ A study of US-based cancer patients and their caregivers indicated that 80% were
interested in treatment-related information on the Internet, while 65% expressed an interest
in online support groups (Monnier et al, 2002).
✦Golant et al (2002) found that 80% of participants in an online support group for women
with breast cancer “found the experience highly rewarding and saw the people in the group
as a relevant new support system that they plan on keeping up after the end of the group
experience. In other words, real relationships were formed.”
✦Like telephone support groups, online support groups are particularly useful for rural,
regional and remote cancer patients and their carers, who are unable to attend face-to- face
groups on a regular basis because of the prohibitively long traveling time that this would
involve.
✦The effectively unlimited geographical reach of the online medium would provide good
matching possibilities for age, life stage, cancer stage, family status, sexual preference and
so on.

24. The next step......
The number of Tasmanians visiting health care sites on the Internet has steadily increased every year. However,
while many say the sites are helpful, more are looking to these sites to change from static to interactive
- to provide information tailored to their needs
- to enhance self-care
- to encourage better provider communication
- to aid in lifestyle management.

26. The opportunity has never been greater to provide new services that promise to give e-health a new look.