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Canadian Partnership Against Cancer

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... to know about me, and that I have breast cancer. ... Breast Health Awareness for Women ... of Hope & Ontario Breast Cancer Community Research Initiative ... – PowerPoint PPT presentation

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Title: Canadian Partnership Against Cancer


1
Providing Person-Centred Cancer Care A
LEARNING KIT FOR VOLUNTEERS
HANDOUTS
  • Canadian Partnership Against Cancer
  • Cancer Journey Action Group and
  • Public Health Agency of Canada
  • April, 2009

2
Scenario 1 When I was offered lumpectomy or
mastectomy I elected mastectomy given the higher
costs of being away from my family. Afterward
there was no one locally available to remove
tubes/bandages/stitches/drains. Once rural women
are back home, they are out of the system.
Theres no information in small towns. Libraries
are not well stocked or current. A common
misunderstanding about rural life is the assumed
connection among people. Just because I live in a
rural area, does not mean I am close to my
neighbours. I dont want them to know about me,
and that I have breast cancer.
Excerpts compiled from report, Perspectives of
Rural Women with Breast Cancer. Canadian Breast
Cancer Network Canadian Breast Cancer
Foundation Community Research Initiative.  
3
Scenario 2 I have gone from the body of an
active 18 year old doing pretty much whatever I
wanted, to a much weaker and more fragile one. I
had a seemingly never ending list of
complications ranging from routine fevers to
pancreatitis, which caused severe pain attacks
and further complications which I am still
dealing with. This may have been the most trying
period mentally as well, because it seemed like I
got a never ending stream of bad news. I did not
really want to make my issues public, especially
at first... I find that I have to make an effort
to will myself to go out and be with my friends.
Cancer has forced me to sit back and take a
look at life and what it means, who I am and
where I am going... as well as seeing the value
of just living day to day, for the
moment. Young man, diagnosed with Leukemia
Excerpts from survivor profile on Realtime
Cancer, Young Adult Cancer Canada web site
http//www.youngadultcancer.ca
4
  • Scenario 3
  • . . . the transportation thing . . . That is a
    problem cause theres days I dont have the money
    . . . One week I had a bone scan one day, the
    next day I had some other tests, then I had
    another test the third day and chemo . . . I
    would phone and say Im sorry but, its not
    like I dont want to come but . . . I was only
    getting 500 a month at the time from the
    provincial income security program . . . I go
    the the cancer treatment centre its 10 there,
    10 back. If I go three times a week theres 60,
    four times 60 is 240.
  • Woman in her late 40s, living on her own

From Lower-Income Women with Breast Cancer, by
Judy Gould, Canadian Woman Studies, 24(1).
5
Activity 5 Scenarios Worksheet
Physical/ mental ability
Aboriginal identity
Socio- economic status
Age life stage
Social
Emotional
Information
Rural/ remote location
Gender
Individual experience
Spiritual
Physical
Sexual orientation
Race Ethnicity
Psychological
Practical
Education/ Literacy
Immigrant/ refugee status
Language
6
Scenario 1 Rebuilding Life After Cancer
The speaker is a 64-year old white male who has
survived prostate cancer after a full
prostatectomy just over a year ago. He grew up in
a poor family in Bosnia before moving to Canada,
and obtained a grade four education. He is
married and works as an independent contractor.
Ive always been in construction and on the
move. . . . I had 63 years with no sickness. You
get used to taking things for granted. . . . And
then suddenly, you hit this brick wall, and you
dont have no control over anything anymore. . .
. When I got home from the hospital, a nurse
came and visited me. I told her I didnt need
her. I can change my own dressing... The gave me
pills for pain. I read the side effects on the
bottle and went and threw them in the garbage.
They want to relieve you of one pain and give you
another two. I didnt want that. After the
surgery I went into a kind of depression... I
mean, I understood that the recovery would be
slow, but it was worse than I thought. I had no
control over my peeing. If I would sneeze I would
wet myself... I tried to slow down, but Im so
used to pushing myself that I just got worse.
Where I grew up, in Bosnia, life was about
survival... My mother bore 15 kids four of us
survived. There wasnt enough food. We slept in a
barn. Ive always felt it was important to work
hard... I kept working, and then I had a mild
heart attack. My family doctor told me I had to
slow down more, so I did... You know, in my work
I have to deal with engineers and architects ,
and sometimes they treat you like youre stupid
because you dont have a university degree. And I
would give them hell... But now I try not to get
into it. The sexual part isnt there anymore...
You just lose morale. I mean, its artificial,
its painful... It takes the desire away, and the
fear comes in and then it doesnt work... I mean,
you just have to live without it. We went back
to Bosnia this year. You see all that
destruction, the houses all torn up, and the
furniture full of bullet holes. You just get so
upset. And it helped me to quit being depressed.
I just thought, hey, what the hell do I have to
complain about?... I had to quit bellyaching and
just try and be as happy as possible... But you
should know it wasnt my health that was the
hardest to deal with. It was the way I got
treated. I was working for a big company at the
time I went for surgery, and I was supposed to
have medical coverage. Well, I did get covered
for the period right after the surgery. But then,
I went back to work too soon and was still
wetting myself, and then I had a heart attack and
was really depressed. I tried to get long-term
disability coverage, but I couldnt. From
Prostate Tales by Ross Gray Mens Studies Press,
2003.
7
  • Scenario 2 Finding Community Support
  • Grace is a 67year-old black woman who was born
    in Jamaica but has lived in Canada for 42 years.
    She lives with her husband, who is supportive,
    and is active in her church. Grace was diagnosed
    with Multiple Myeloma four years ago.
  • Besides having cancer I also have fibromyalgia,
    which is quite debilitating - it depletes your
    energy and you feel quite lethargic sometimes it
    interferes with your brain, your thinking process
    I also have osteoporosis quite badly in my neck
    and in my spine area so I have to be extremely
    careful not to fall. So having these three
    debilitating diseases I sometimes need to talk
    with someone.
  • My greatest challenge is that I dont have the
    desire to go out like I used to I used to like
    to shop and like clothes. I just dont have the
    desire now I want to get back that spirit - to
    get dressed and go out by myself .
  • Im a member of a support group for Caribbean
    women. It started because women of colour and
    religious cancer survivors did not have any place
    to go for support or knowledge our culture is
    different, our foods are different, our needs
    the groups that were meeting did not understand
    us In many groups, I understand, you are not
    allowed to mention God. Now for us that is very
    difficult because we rely on God for every aspect
    of our lives... I go to God for support and
    comfort.
  • Many people in our community dont like to talk
    about having cancer. Some dont tell their
    families. (Interviewer Why is that?) Its a
    cultural thing and if we go back to slavery when
    our ancestors came to different countries as
    slaves they had to be secretive so it comes
    down from that generation where we are always
    taught not to be too open. And thats not the
    only reason why. I myself tend to be a private
    person and being diagnosed with cancer also you
    go through so many different emotions and
    sometimes you really dont want to talk about it
    probably psychologically we are trying to wish it
    away.
  • Another problem is that many people of colour
    find in hospitals and different places... they
    are sort of treated differently. They don't treat
    them the same as they treat Caucasians, the other
    groups. Although we are uniquely different in
    our make-up as a person we are the same and we
    like to be treated with respect, dignity, as
    other nationalities . . . Sure we are a guest in
    your country but many of us have been here for a
    long time after we put in our strength, our
    youth into the economy, when we are sick, we
    would like to get something back. Here is our
    group for four years and we cant get a
    substantial amount of funding that will help the
    people who come to us for help. So you know,
    those are the things that concern us and
    sometimes make you a bit angry, and you wonder,
    why cant we feel like we are a part of the
    society here?
  • Interview excerpts from the study Women of
    Colour
  • Living with Breast Cancer, J. Nelson F.
    Agyapong,
  • Ontario Breast Cancer Community Research
  • Initiative, 2004.
  • Grace is a pseudonym

8
Scenario 3 A Long, Uncertain Journey through
Cancer Julie was a 21-year-old nursing student
when she was diagnosed with Hodgkins Lymphoma.
She suffered a relapse two years later, and is
now in remission. She works as a public health
nurse, is completing a Masters degree, and is in
a long-term relationship. When I heard I had
cancer The room instantly turned to fog... the
air was thick and close and I felt like I wasnt
in my own body. After I realized what had
happened, I resigned myself to fight... I was
going to beat it. Relapse is a different thing.
No fog, nothing like that just absolute doom,
unshakable...Thats when I thought about death
and thought about it hard. My family was
supportive in many ways they were a nightmare in
others... They were there physically to take me
to appointments and my mother was very supportive
with medical concerns. But emotionally, my family
was non-existent. During chemo, I was stuck in
the boon docks with no cable, no Internet, no
video games, a 20 minute drive to rent a movie,
no wheels, no close friends, squat. Doing nothing
is the most painful thing in the world and it is
a recipe for disaster... Some friends became
non-friends. I received comments such as... If
anyone was going to get cancer, Julie, its good
that its you because you can beat it... There
were the usual comments from school mates who
didnt know... Gosh Julie, you look like shit
or Geez, arent you taking a lot of pills!.
But they werent all negative. I made three
friends who I will be friends with for life...
People disappear because they cant handle it and
others are angels that come out of the woodwork.
But... aside from a treasured few, my experience
is that people our age are pretty useless, even
now. Honestly, most people think Im strong. I
hear that all the time but, truly, I think its
crap. You dont have a choice, do you? You get
cancer and then you deal with it... The hardest
part was not having someone to talk to about the
reality of it all, to talk about my feelings...
You talk a lot about your body but not about your
mind and your heart and your spirit. I felt that
I had to believe in myself, all by myself.
Everyone else believed in my body, the body that
I felt had betrayed me. I had to find strength
deep inside... I have been diagnosed with Post
Traumatic Stress Disorder. Im supposed to be
getting some psychotherapy but there is a waiting
list... I havent moved past the anger stage of
grieving and am going to need some help to do
that. I think Im going to live for now but Im
not sure for how long. The future scares the crap
out of me but its been almost three years now
and I feel good so it gets better as each year
passes. Im so tired of the happy pink
ribbons... Cancer isnt happy it sucks and we
deal with it and we move on and do amazing
things... but lets not sugar-coat the whole
thing. What utter and complete denial. Lets talk
about the truth. Excerpts from Julies survivor
profile on Realtime Cancer, Young Adult Cancer
Canada Web site http//www.youngadultcancer.ca

9
Constellation of Needs
Information about cancer related services, to
inform decisions, reduce anxiety
Physical pain, nutrition, help with daily living
Emotional reactions feelings, i.e. anxiety,
fear, sadness
Individual experience
Social family community network
Psychological coping with cancer, changes
consequences
Practical financial, home support, childcare,
transportation
Spiritual meaning and purpose in life, religious
or other views
10
Constellation of Needs and Social Inequalities
Physical/ mental ability
Aboriginal identity
Age life stage
Socio-economic status
Rural/ remote location
Gender
Sexual orientation
Race ethnicity
Education/ Literacy
Immigrant/ refugee status
Language
11
Our Vision for Cancer Care
For all Canadians equal access and respect for
different needs relating to race, culture, or
faith language Aboriginal status urban,
rural or remote location immigrant or refugee
status sex, sexual orientation, gender
family structure work and money age
physical or mental ability overall health and
stage of disease
12
  • Getting Quality Care as a Cancer Patient
  • What you can expect, what you can do
  • The Canada Health Act aims to protect, promote
    and restore the physical and mental well-being of
    residents of Canada and to facilitate reasonable
    access to health services without financial or
    other barriers. Likewise, your healthcare
    providers aim to uphold these principles by
    offering the best quality care possible, based on
    current scientific knowledge and available
    resources.
  • As a cancer patient, or as the guardian or
    advocate of a cancer patient, you should expect
  • treatment in a qualified hospital or cancer
    centre by well-trained professionals
  • a timely and correct diagnosis by a cancer
    specialist
  • the best standard of care available for all
    stages of illness, including tests, diagnosis,
    surgery, drug treatment, follow-up, support, and
    palliative care
  • privacy, confidentiality, protection of personal
    information, and access to your medical records
    or those of your loved one
  • that healthcare providers will explain to you
    the best treatments available, including new or
    experimental treatments
  • sensitive care in which all possible steps are
    taken to reduce harm
  • respect for cultural, racial, gender, and
    religious differences, as well as differences in
    age, sexual orientation, financial situation, and
    physical, mental and intellectual abilities
  • that your healthcare team will provide or direct
    you to other services you may need, including
  • counselling or support (psychosocial services)
    from psychologists, social workers, cancer
    nurses, spiritual leaders, or community support
    groups
  • information about financial support for costs
    that are not covered, e.g. drug coverage,
    transportation
  • translation or interpretation

13
  • Ctnd...
  • As a cancer patient, or as the guardian or
    advocate of a cancer patient, you are entitled to
    ask questions, be informed, and take part in
    decisions about your or your loved ones care,
    including
  • expressing any concerns about treatment
  • asking for information in clear, understandable
    language
  • asking for a second opinion without fear that
    treatment will be affected
  • exploring treatment options in other provinces
    or countries
  • deciding whether students or researchers are
    present
  • being informed and making decisions about
    alternative or complementary treatments
  • refusing any course of treatment
  • seeking legal advice about a complaint if
    necessary
  • You can enhance the quality of care by providing
    your healthcare team with as much information as
    possible in the following areas
  • past and present health concerns, hospital
    stays, medications, etc., including information
    about home, social life, school, or work that
    might influence care
  • any difficulties you may have in complying with
    treatment schedules and appointments


14
Works Consulted (for reference and further
reading) Access Alliance. Racialized Groups and
Health Status. 2005. Available at
http//atwork.settlement.org/downloads/atwork/Raci
alised_Groups_Health_Status_Literature_Review.pdf
Austin, S., Femmes Francophone Atteintes du
Cancer du Sein, Project report available at
http//www.womensresearch.ca/PDF/programs/francoph
one.pdf Beavon, D. and Cooke, M. (2003) An
Application of the United Nations Human
Development Index to Registered Indians
in Canada, 1996, in White J.P., Maxim, P.S. and
Beavon, D. (eds.) Aboriginal Conditions Research
as a Foundation For Public Policy.Vancouver
University of British Columbia Press. Blank,
T.O. (2005). Gay Men and Prostate Cancer
Invisible Diversity, Journal of Clinical
Oncology 23(12) pp. 2593-2596. Breast Health
Awareness for Women with Disabilities. Web site
http//www.bhawd.org/sitefiles/index2.html
British Columbia Hospice Palliative Care
Association. (2007). Volunteer Standards for
Hospice Palliative Care in British Columbia.
Available at http//www.hospicebc.org/ Canadian
Association of Psychosocial Oncology (CAPO) and
TransCanada PipeLines Limited. (2003). The
Emotional Facts of Life with Cancer A Guide to
Counselling And Support For Patients, Families
and Friends. Available at www.capo.ca Canadian
Cancer Society (Ontario Division). (2003).
Breaking Down the Barriers The Canadian Cancer
Societys Study of Cancer Patient Caregiver
Needs in Ontario. Available at
http//www.cancer.ca/ccs/internet/standard/0,3182,
3543_12947_151165132_langId-en,00.html Cancer
Advocacy Coalition of Canada. (2007). Report Card
on Cancer in Canada. Available at
http//www.canceradvocacy.ca/reportcard/2007/Repor
t20Card20on20Cancer20in20Canada,202007.pdf
Fitch, M. (2000). Supportive Care for Cancer
Patients, Hospital Quarterly, Summer 2000.
15
Works Consulted ctnd. Fitch, M.I. (2005). Needs
of patients living with advanced disease,
Canadian Oncology Nursing Journal 15(4) pp.
230-42. Fitch, M.I. (2008). Supportive care
framework, Canadian Oncology Nursing Journal,
18(1) pp. 6-14. Gould, J. Grassau, P. (2005)
Spirituality and Breast Cancer, in breast
cancer info exchange, Ontario Breast Cancer
Information Exchange Partnership (OBCIEP).
Available at http//www.obciep.on.ca/Files/Spring
05RevisedWrd.pdf Gould , J., Sinding, C.,
Mitchell, T., Fitch, M., Aronson, J.,
Burhansstipanov, L., Gustafson, D., McGillicuddy,
P., Peng, I. (2005) How Gender, Poverty, Age and
Aboriginal Identity Matter in Womens Similar
Experience of Breast Gynecological Cancer,
Ontario Breast Cancer Community Research
Initiative Newsletter, Fall 2005. Available at
http//www.crwh.org/PDF/OBCCRI/fall2005.pdf Gould
, J. (2004) Lower Income Women with Breast
Cancer Interacting with Cancer Treatment and
Income Security Systems, Canadian Woman Studies
24(1) pp. 31-36. Gray R.E., James, P.,
Manthorne, J., Gould, J., Fitch, M.I. (2004). A
consultation with Canadian rural women with
breast cancer, Health Expectations
7(1)40-50. Gray, R. (2000). Prostate Tales
Mens Experiences with Prostate Cancer. Harriman,
TN Mens Studies Press. Hospice Northwest
Volunteer Training Program. Summary of Training
Modules. Thunder Bay, ON. Available at
http//www.hospicenorthwest.ca/volunteer/docs/HNW_
Volunteer_Training_Program_Summary.pdf. Jantzi,
S., Murphy, S., Simpson, J., Hospice Palliative
Care Volunteer Project Team (2003). Provincial
Hospice Palliative Care Volunteer Resource
Manual. Province of Nova Scotia Cancer Cancer
Nova Scotia. Lesbians and Breast Cancer Project
Team. (2004). Coming Out About Lesbians and
Cancer. Project report available at
http//dawn.thot.net/lbcp/report.html Lesbians
and Breast Cancer Project Team. (2004). Silent
No More Coming Out About Lesbians and Cancer,
Canadian Woman Studies 24(1) pp. 37-42. Nelson,
J., Gould, J., Keller-Olaman, S., Eds. (2009).
Cancer on the Margins. Toronto University of
Toronto Press.
16
 
Works Consulted ctnd. Nelson, J. Macias, T.
(2008). Living with a White Disease Women of
Colour Their Engagement with Breast Cancer
Information, Womens Health and Urban Life 7(1).
Available at http//www.scar.utoronto.ca/socsci/
sever/journal/contents7.1.html Nelson, J. (2006)
Examining breast cancer information from racially
marginalized perspectives a community-based
analysis. Project report available at
http//www.womensresearch.ca/PDF/programs/Cancer_I
nfo_Margins.pdf Nelson, J. Agyapong, F.
(2004). Women of Colour Living with Breast
Cancer The Search for Support. Canadian Woman
Studies 24(1) pp. 167-172. Nyhof-Young, J.,
Friedman, A., Jones, J.M., Catton, P. (2006).
Partners in Caring Administration of a
Hospital-based Volunteer Program for the
Education and Support of Cancer Patients, The
International Journal of Volunteer Administration
14(2), p. 73-82. Olive Branch of Hope Ontario
Breast Cancer Community Research Initiative
(2005). Women of Colour Living with Breast
Cancer sharing, supporting, surviving. Booklet,
available through The Olive Branch of Hope Breast
Cancer Support Services. Contact 416 256-3155.
http//www.theolivebranch.ca/index.asp?pid9 Onta
rio Breast Cancer Community Research Initiative.
(2007). Fact Sheet Cancer Does Not
Discriminate. Available at http//www.womensrese
arch.ca/PDF/programs/Marginalized_nov23.pdf Ontar
io Breast Cancer Community Research Initiative.
(2007). Fact Sheet Understanding the Cots of
Breast Cancer. Available at http//www.womensres
earch.ca/PDF/programs/Breast_Cancer_Costs.pdf Ont
ario Breast Cancer Community Research Initiative.
(2003). 'Nothing Fit Me' The Information and
Support Needs Of Canadian Young Women with Breast
Cancer. Final Report of the National Consultation
with Young Women with Breast Cancer prepared in
partnership with the Canadian Breast Cancer
Network. Available at http//www.cbcn.ca/docs/Not
hing20Fit20Me20Final20Report.PDF Ontario
Breast Cancer Community Research Initiative.
(2001). Perspectives of Rural Women with Breast
Cancer. Canadian Breast Cancer Network Focus
Group Project 2001. Available at
http//www.cbcn.ca/en/?page1044category186sect
ion1regionALLprevsearch
17
Works Consulted ctnd. Realtime Cancer Survivor
Profiles. Young Adult Cancer Canada web site.
Available at http//www.youngadultcancer.ca Stat
istics Canada, Lower income and declines in
self-rated health, The Daily, June 5, 2007.
http//www.statcan.ca/Daily/English/070605/d070605
a.htm Stewart, D., Cheung, A., Ferris, L.,
Hyman, I., Cohen, M., Williams, J., eds. Ontario
Women's Health Status Report. Feb. 2002.
available athttp//www.ontla.on.ca/library/repos
itory/mon/4000/10305833.pdf Task Group on
Volunteer Best Practices and Quality at the
Health Canada Secretariat on Palliative and
End-of-Life Care. Web site http//www.virtualhosp
ice.ca/Advertisement/DisplayAdvertisement.asp?lngA
dvertisementID33 The Colour of Poverty
Campaign. (2007). Understanding the Racialization
of Poverty in Ontario, Toronto Colour of Poverty
Campaign. Available at www.colourofpoverty.ca.
18
Cancer Information and Advocacy Resources
(National) Brain Tumour Foundation of Canada.
www.braintumour.ca Canadian Association of
Psychosocial Oncology. www.capo.ca Canadian
Breast Cancer Foundation. www.cbcf.org Canadian
Breast Cancer Network. www.cbcn.ca Canadian
Cancer Society. www.cancer.ca Canadian
Partnership Against Cancer. www.partnershipagains
tcancer.ca Canadian Prostate Cancer Network.
www.cpcn.org Cancer Information Service.
www.cancer.ca Ph 1-888-939-3333 Childhood
Cancer Foundation. www.candlelighters.ca Gildas
Club. www.gildasclub.org Leukemia and Lymphoma
Society of Canada. www.leukemia-lymphoma.org Look
Good Feel Better. www.lgfb.ca Lung Cancer
Canada. www.lungcancercanada.ca Ovarian Cancer
Canada. www.ovariancanada.org Public Health
Agency of Canada. Centre for Chronic Disease
Prevention and Control Cancer.
www.phac-aspc.gc.ca/ccdpc-cpcmc/cancer/index_e.htm
l Willow breast cancer support Canada.
www.willow.org Young Adult Cancer Canada.
www.youngadultcancer.ca
19
  • Activity 6 List of Local Resources
  • For each category below, use the resources
    available to you (online, libraries, peers,
    supervisors) to find 2 local resources or
    services that could be useful to someone living
    with cancer or their family members. When
    complete, check your list with your supervisor
    and verify how to make appropriate referrals.
  • Physical (freedom from pain, nutrition,
    activities of daily living)
  • Contact info ___________________________________
    ______________________
  • Description _____________________________________
    ______________________
  • 2. Contact info _________________________________
    ________________________
  • Description _____________________________________
    ______________________
  • Informational (symptoms, disease, treatment,
    coping skills)
  • Contact info ___________________________________
    ______________________

20
  • List of Local Resources, continued
  • Social (community networks)
  • Contact info ___________________________________
    ____________________
  • Description _____________________________________
    _____________________
  • 2. Contact info _________________________________
    ______________________
  • Description _____________________________________
    _____________________
  • Spiritual (meaning of life, illness and death)
  • Contact info ___________________________________
    ____________________
  • Description _____________________________________
    _____________________
  • 2. Contact info _________________________________
    ______________________
  • Description _____________________________________
    _____________________

21
 Person-Centred Cancer CareLearning
ToolkitEvaluation Form
  • Thinking about the content of todays workshop,
    what main ideas or concepts were most important
    or useful to you?
  • Thinking again about the content of the workshop,
    were there any areas that you felt could be
    improved? If so, how?
  • Thinking about the activities in todays
    workshop, which ones did you find most useful?

22
  • Evaluation form, continued
  • Were there any activities in todays workshop
    that could be improved? If so, how?
  • What did you think of the presentation of todays
    workshop (e.g., format, design, length, etc.)?
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