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The involvement of patients and survivors in volunteer advocacy survey
 

The involvement of patients and survivors in volunteer advocacy survey

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The Canadian Cancer Survivor Network (CCSN) conducted a survey in April 2013 the discover the impact that being involved in volunteer advocacy and/or the development of public policy has on cancer ...

The Canadian Cancer Survivor Network (CCSN) conducted a survey in April 2013 the discover the impact that being involved in volunteer advocacy and/or the development of public policy has on cancer patients, survivors, caregivers and family members. 51 people completed the survey. Findings were that patient advocacy generally has a positive impact on the self-image of those doing it, that many volunteer advocates felt better, prouder, more useful, more hopeful, more effective and more powerful. Still others felt less angry, less anxious, and less sad. But some survey respondents did feel sadder, angrier, less hopeful and less content. CCSN recommends that organizations ensure that cancer patients involved in advocacy activities receive skills to help them and support to deal with the often slow-moving and sometimes frustrating healthcare, cancer care and government systems in Canada.

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  • J Palliat Care. 1990 Summer;6(2):33-45.Empowerment and persons with cancer: politics in cancer medicine.Gray RE, Doan BD, Church K.SourceDepartment of Psychology, Sunnybrook Health Science Centre, North York, Ontario, Canada.AbstractPersons with cancer are likely to encounter a loss of personal control as a result of their illness experience. An empowerment perspective, which emphasizes the possibility of patients "owning their own lives", is useful for understanding the interpersonal and social dynamics of patients' loss of control and for guiding the development of strategies aimed at maximizing control. Because the factors influencing an individual's sense of control are multi-leveled, optimal empowerment occurs when strategies are employed at several levels of social organization. In this paper, a number of barriers to the empowerment of cancer patients are identified and strategies recommended to enhance patient empowerment in cancer care. The empowerment needs and strategies discussed here include: (a) the provision of optimal care, (b) the enhancement of individual patient power, (c) the development of a strong consumer voice in policy decision-making processes, and (d) societal attitude change.

The involvement of patients and survivors in volunteer advocacy survey The involvement of patients and survivors in volunteer advocacy survey Presentation Transcript

  • The impact of cancer patient involvement inadvocacy and public policy developmentJackie ManthornePresident & CEO, CCSN
  • About CCSN• National organization representing patients,survivors and loved ones affected by any cancer.• 30 partner groups representing a number ofcancers and cancer issues.• Our mission is to:– Empower collaborative action.– Provide education and action opportunities.– Educate the public and policy makers about thefinancial, emotional and health costs of cancer.– Research ways to alleviate barriers to optimal patientcare and follow-up.
  • Activities• CCSN:– Asks questions of parties in federal, provincial & territorialelections.– Makes submissions to the pan-Canadian Drug Oncology Review(pCODR) and Common Drug Review (CDR/CADTH).– Is holding a series of eight webinars on advocacy issues in 2013– Held a Legislative Breakfast at Queens Park to raise awarenessof metastatic prostate cancer.– Is organizing a Bad to the Bone public awareness campaign toraise awareness of bone metastases in prostate and breastcancer patients.– Has made presentations at the World Cancer Congress andPCCN Ottawa, among others.
  • More Activities– Has organized a public awareness campaign about chemo-induced nausea and vomiting, including 3 videos on YouTube.– Has held a media campaign on the impact of prostate cancertreatment on sexuality.– In process: creation of asbestos, lung cancer & mesotheliomaprimer on CCSN’s website.– In process: creation of improved section on prostate cancer onCCSN’s website.• CCSN also has three advisory councils composed ofpatients, survivors, caregivers and family members:– CCSN Prostate Cancer Advisory Council– CCSN Breast Cancer Advisory Council– CCSN Asbestos and Mesothelioma Advisory Council
  • Involvement of patients &survivors in volunteer advocacy• Guiding question– What impact does being involved in volunteer advocacyand/or the development of public policy have on howpatients feel about their illness?• References– “Empowerment and persons with cancer: politics in cancermedicine.” Grey, RE, Doan BC, Church K. J. Palliat Care,1990 Summer; 6(2):33-45.• Survey on SurveyMonkey in April 2013.• Open to cancer patients, survivors, caregivers, family members.– First section: Questions about volunteer advocacy activities.– Second section: Provided an opportunity to share what their involvementin volunteer advocacy meant to them.
  • Survey results• 51 cancer patients, survivors, caregivers and familymembers completed the survey.– 86% were cancer patients or survivors.– 10% were caregivers.– 10% were family members.• When asked what kind of cancer group they were amember of, respondents said:– Local support group: 69%– Local group that raises funds for is activities: 24%– Regional organization: 20%– National organization: 51%– None at this time: 10%
  • Survey results• When asked how many cancer organizations theywere currently involved in, respondents said:– 1 group: 15 people– 2 groups: 8 people– 3 groups: 4 people• When asked how many hours they volunteeredduring a typical month:– Responses ranged from 1 hour to 100-200 hours.– The mean or average was 24 hours a month.– The median was 8 hours a month.
  • Survey results• When asked what kind of advocacy campaigns theyhad been involved in, respondents said:– To raise public awareness: 95%– To educate key decision makers, like politicians or thoseworking in our healthcare or cancer care system: 58%– To change public policy: 28%• When asked where these campaigns took place,respondents said:– Local: 83%– Regional: 45%– National: 35%
  • Survey results• Volunteer advocacy activities:– 76 % of respondents have written a letter to a politician or someone inhis or her office about an important issue.– 46% have written a letter to someone in authority at a hospital, cancercentre or other healthcare or cancer care facility about an importantissue.– 61% have called a politician or someone in his or her office to discussan important issue.– 39% have called someone in authority at a hospital, cancer centre orother healthcare or cancer care facility about an important issue.– 54% have met with a politician or someone in his or her office todiscuss an important issue.– 46% have met with someone in authority at a hospital, cancer centreor other healthcare or cancer care facility about an important issue.
  • Survey results• Comments included:– “Politicians and directors need to know if there arefailings in their organizations. Direct contact is theonly way to ensure your message is heard.”– “You get to talk to the politician that represents youand let them know what problems you are facing as acancer patient.”– “Change only happened after many letters or calls.”– “The need for policy change must be heard anddemonstrated.”
  • Survey results• Volunteer media activities:– 60% of respondents contacted a reporter orsomeone else working in the media about animportant issue.– 98% have done an interview with the media aboutan important issue.– 65% have acted as a spokesperson for anorganization about an important issue.– 19% have organized a media campaign.
  • Survey results• Comments included:– “We still have problems getting the media attentionthat we wish.”– “You can let other people in your situation know thatthey aren’t alone.”– “The public needs to understand why they also needto care about this and to be engaged.”– “Raised awareness but did not initiate change.”– “I felt that expressing my view and finding otherpatients to do that brought the issue to publicattention, and in some cases changed things.”
  • Survey results• Of those who wrote, called or met with politicians orhealthcare/cancer care decision makers,– 64% felt that they made a difference.– 9% felt that they did not make a difference.– 27% weren’t sure.• Of those who contacted media, were interviewed,acted as spokesperson, or organized a media campaign,– 60% felt that they made a difference.– 5% felt that they did not make a difference.– 35% weren’t sure.
  • Survey results• Respondents were also asked whether theyfelt their volunteer advocacy activities made adifference in better treatment for others.– 65% felt that they made a difference.– 7% felt that they did not make a difference.– 28% weren’t sure.
  • Survey results• When asked which cancer issues were most important tothem, respondents replied:– Issues related to their particular cancer and health in general.– Patient advocacy and support.– Screening.– Access to Improvements in treatment and timely treatment.– Better information to decide between treatment options.– Public Education and public awareness of cancer issues.– Lack of psychosocial support during and after treatment.– Provincial coverage for drugs and lack of equitable access.– Faster diagnosis.– Help for patients in financial and/or emotional distress.– Stigma of lung cancer patient.– End of life care.
  • Survey results• The final question was whether having beeninvolved in volunteer advocacy maderespondents feel different about their illness:– Yes: 61%– No: 18%– Not sure: 21%
  • Survey results• Comments included:– “My illness has led me to become involved in somethingimportant.”– “I am comfortable as an advocate; learning more has reducedmy anxiety on certain issues.”– “Nothing can change the fact that I have cancer, but it makes mefeel better that I have done a few little things to maybe helppeople who are getting diagnosed now to have an easier time.”– “I think it is important to be active about promoting changes inthe cancer system that don’t work rather than being inactive orreactive.”– Helping others makes me feel better, especially when trying tomake changes that will improve things for every one.”
  • Summary– Patient advocacy generally has a positive impacton the self-image of those doing it.– Many volunteer advocates feel better.– They feel prouder, more hopeful, more useful,helpful, effective, and powerful.– Still others feel less angry, less anxious, and lesssad.– But some survey respondents did feel sadder,angrier, less hopeful, and less content.
  • Recommendations– Organizations should ensure thatpatients, survivors, caregivers and family membersworking in advocacy are provided with the skills theyneed to undertake advocacy, including information onCanada’s healthcare and cancer care systems as wellas how our government functions and media training.– They should also be provided support to deal withoften slow-moving and sometimes frustratinghealthcare, cancer care and government systems.– As one survey respondent put it, “Awareness wasraised, but the gears of change are lubricated withmolasses and heat is needed to get things moving.”
  • How to reach usCanadian Cancer Survivor Network1750 Courtwood Crescent, Suite 111Ottawa, ON K2C 2B5Telephone: 613-898-1871E-mail: jmanthorne@survivornet.ca ormforrest@survivornet.caWeb site: www.survivornet.caBlog: http://jackiemanthornescancerblog.blogspot.com/Twitter: @survivornet.caFacebook: www.facebook.com/CanadianSurvivorNet