university of california, san francisco school of nursing

Julia Challinor, RN, PhD

University of California, San Francisco School of Nursing

SIOP 44th Congress, London

October 2012

SIOP AFRICA PARENTS/NURSES

ADVOCACY MEETING MARCH 23, 2012

ALONE 1. Met parent for coffee to comfort and remember

2. As a parent, my daughter had cancer

3. Bring disease control (eg. low WBC counts and chickenpox) awareness to parents of children who are learners with a child with cancer (pre-primary).

4. Promoted blood donating to peers

5. To hospital director

6. Advocated for a patient – for a parent to give consent for disclosure of diagnosis. Child had

osteosarcoma and parent refused to sign consent for amputation – 12 year-old boy.

7. Fundraising

8. That more teachers be available for the hospital school and help assist all the children in basic education from preschool to high school

9. Advocating for a patient to be treated irrespective of the fact that the patient’s referral was

improperly done from another African

10. The child was for discharge, day 6 after an ulcerating wound was discovered on a right shoulder. Generally he was not looking well with pyrexia. Visiting by family was minimal. Not ideal to go home after 4 days of antibiotics.

11. Motivate from double-push chair pram

12. Advocating for fundraising dinner 21st May 2012

12. Maintain: equipment in unit, grounds of unit, furnishings

13. Facilitating in Zambia. Mobilizing of partners, resources accessibility and information, information delivery to ministers in Zambia

14. Sports event

15. Actively talk about children with cancer to other people/church

16. The act of pleading for. Pain management - realized our children’s pain was NOT being effectively managed. I did a pain survey with dr’s, nurses,

parents and social workers to see if we all believed the myths e.g. that morphine is addictive, children will exaggerate their pain and over report, that there is no memory of pain and that child won’t be affected life-long from pain. From this I have tried to introduce a Pain Diary. Constantly remind nurses and parents and where applicable, the dr’s of the need for proper pain management

17. To ensure that proper nursing care is given to patients. Not considering their skin colour, financial background.

18. I advocated alone – Pain management – as a reality and not a performance art

SIOP AFRICA PARENTS/NURSES

ADVOCACY MEETING MARCH 23, 2012 PARENT

1. 3 responders - Fun Run

2. opened a children’s hospice with parent accommodation

3. ran International Cancer Day

4. urged the parent to send the child to hospital for diagnosis and care. The parent could not raise the money. I talked to the relatives who assisted by raising funds and the child was sent to hospital and received treatment.

5. Fund raising with other parents

6. Childhood cancer awareness

7. Awareness

8. Advocating with a parent. I consulted with my neighbor (mom). Neighbor’s daughter was ill. Mom excused illness coughing and loss of weight as Dad smoking and being retrenched. Took daughter to state hospital after investigation discovered to be cancer.

9. Help parent to deal with grief after losing a child

10. Oncology Family Xmas Party

11. One-on-one talks encouragement

12. MWECS – Mathiwos Wondu-Yethiopia Cancer Society

13. Pleading for support of drugs for the child with cancer (non-Hodgkin disease)

14. CHOC – work, awareness of warning signs, fundraising, parental support, psychosocial support

15. With parent if needs assistance with understanding medication or the disease or protocol

16. ICCD awareness (creating)

17. Advocated with patient as doctors kept on poking the patient with a port trying to gain venous access, I asked the doctor. “Why are they inflicting pain to the patient as the patient had a port”.

18. Fund raising, awareness creation, parties

19. Patient, parent support group

20. Interacting with another parent who have a child with cancer

21. To parliament If you advocated with parent – educated

22. Fund raising with parent cake sale, advocated with parent

teaching

23. Fund raiser

24. Walked with children, parents, health workers to create awareness

about childhood cancer

25. Advocating with parent for patient to have portocath inserted due

to poor access

26. Engaged parents at hospital: together with children who were fit

enough to attend the celebration at hospitals. Family Oncology

Resource Centre at hospital premises. Sell donated clothing at Flea

Market to raise money.

27. Founding an NGO to support with cancers, celebration of ICCD on

15th Feb. 2012

28. Fundraising

29. Organize remembrance service

30. Funding money from my relatives, discuss in the hospital with

parents

31. Drawing of peripheral blood specimen, I’m always fighting with the

intern doctors to request permission from my patients before

drawing any blood from them

32. Advocate for a child – tell parents warning signs sepsis/need to

come back for treatment --- child’s life

33. I distributed Childhood Cancer ribbons to all the kids in the

Children’s Oncology ward at the Queen Elizabeth hospital Blantyre

34. Christmas Party

35. Mom’s night away

36. Cancer awareness with a group of parents

37. To stay in CHOC House rather than traveling home due to distance

and lack of funds

SIOP AFRICA PARENTS/NURSES ADVOCACY MEETING MARCH 23, 2012

HEALTHCARE TEAM 1. Fun run

2. Advocating with a health team member with parents – informative talks about childhood cancer

3. Head nurse became change agent

4. Psychologist, doctor, careplan upon patient discharge

5. Reintegration into school

6. Infection control guidelines. Tri-fold pamphlet for parents of a child

with cancer

7. Network in hospitals with moms

8. On International Childhood Cancer Day, awareness walk, Helium

balloons for children, refreshments

9. I went to Lesotho Masenus NetCare Hospital. Advocated for our patients in Lesotho with Director for Pediatrics care and advocated

for our oncology patients

10. Walk. We had an awareness walk with different health care workers

and parents, children. To create childhood cancer.

11. Advocated with a member of my healthcare team. Teaching fellow

colleagues on oncology conditions

12. Asked doctors to give orders to nurse in cubicle and not just to ward

sisters.

13. Mom was breastfeeding. Asked doctors if they could put her in a side

cubicle.

14. Advocated with healthcare staff for blood transfusion availability

15. To Dept. of Health

16. Pleading (begging) for drugs for a poor child with Hodgkin’s

Lymphoma

17. Nursing student required easily identified labels on chemotherapy

bags.

18. Cytotoxic safety. Wanting easily identifying stickers on

chemotherapy bags

19. Assisted with research for colleague. Set up fundraising for unit.

Identify recipients for food vouchers/clothing

20. Black Lion Hospital and Federal Ministry of Health

21. At hospital – awareness

22. With doctor to please arrange grant for a child

23. Dealt with health department

24. Currently doing fundraising on 26th May dinner 2012 for Kayala

Childhood Cancer Foundation

25. Fund raiser

26. Follow-up treatment given early to avoid long waiting period

27. A patient’s medical insurance had run out, and could not afford

any private medical care anymore. I advocated for the patient,

together with the pediatrician, made possible for the patient to

be transferred to a government hospital for continuity of care.

28. Awareness to other parents. Tygerberg Hospital – G3 Pediatric

Oncology

29. Fun walk

30. Ran and organized ICCD

31. 10km fun walk

32. donating items for fund-raising

33. exhibition

34. advocated what I thought needed to be done in a bad situation


NATIONAL 1. Fun Run

2. Worked with national group

3. Request for more teachers for the hospital school

4. Awareness campaign. Fund raiser. Advocated for

patient with national organization

5. Fund Raiser and awareness Shavathon (shaving

hair off)

6. Fundraising

7. Organise Remembrance Service

8. Fundraiser

9. Princess Day – Childhood Cancer Day

10. INCTR Nursing group

11. I went around spreading messages on awareness

distributing messages and balloons on Childhood

Cancer Day. We did this throughout Blantyre City

in 3 hospitals and individuals

12. Raising awareness on radio

13. Awareness campaign on cancer in rural areas

14. Board on Cancer Control and Prevention

15. To parliament

16. I took part in an already organized fun walk (8km walk)

at the JHB 200 Lake with my cousins. I paid R60.00

entrance fee and the money went to the Wits University

Hospice for Cancer. I am looking forward to another

cancer cause.

17.Asking CHOC to renovate our unit which was getting

small for our growing patient needs.

18.NGO. Ongoing after care support (hospice care)

19.Raising awareness

20.As Kidzcan we advocated for parents who had children

living with cancer get free treatment in order so that they

don’t pay hospital bills, because of the length of time

they spend in hospital.

21.Sunflower Fund. Identify patients for ad campaigns.

Reach for a Dream, identify camp attendees.

22.National work-up group under the Federal Ministry of

Health – World Cancer Day

23.Fundraisers, conference, school talks

24.Currently advocating for a fundraising dinner

25.Out of Africa Children’s Foundation. CANSA join our

board and Tygerberg Hospital, join our board

26.Ran ICCD (International Childhood Cancer Day)

27.Network meetings

28.Creating awareness with the organization by speaking

with mothers or parents at clinic


INTERNATIONAL

1. presented to Tear Australia

2. with ICCCPO to WHO

3. ICCCPO World Childhood Cancer Day

4. Conference

5. Fundraising dinner 21st May 2012

6. I went overseas to Canada with Tygerberg Hospital and joined in an international conference

7. I wrote a volunteer guide for United Planet for their international volunteers explaining the children’s needs.

8. Ran International Cancer Day ICCD

9. An NGO visited my hospital to pay bills for general paediatric cases who were discharged but could not pay their bill. I was the nurse on duty for the block that day. So after their donation, I spoke to them about the need to help children with cancers because their drugs were expensive. They gave money there and then paid for some patients to cover their chemotherapy.

10. Meeting with Embassy


POTENTIAL INTERNATIONAL ORGANIZATIONS AS TARGETS OF ADVOCACY • OOAC (Out of Africa Children’s Foundation)

• UICC

• ICCCPO

• American Cancer Society

• INCTR

• WHO

• UNICEF

• UN

• NCD Alliance

• NCD Child Focus Group

• CANSA

• Make ourselves marketable

• Strengthen local organizational ties with neighbors – then you are an international organization

• Make people believe we are serious

• International Children’s Palliative Network

• Hospice International

• International Donors • Documentation critical

• African Palliative Care Association

• Mission To protect and promote the rights and well-being of children in the Maldives with cancer.

• Vision To make Maldives (your country’s name) a society where every child with cancer has the support they need to be healthy, stay safe and enjoy and achieve.

ARC (Advocating the Rights of Children) Website

• Aims and Objectives (your parents’ group name here) works in collaboration with Government authorities and like-minded organisations, to lead the advocacy efforts on: Protecting and promoting the safety and wellbeing of children with cancer.


• Aims towards:

– Conducting regular research and identifying priority areas concerning the welfare of children with cancer.

– Sensitising and influencing decision makers to improve existing laws, policies and practices.

– The inclusion of the rights prescribed in the UN CRC in national laws and regulations and their effective implementation.

– The elimination of policies that undermine the wellbeing of children with cancer.


– Strengthening reporting procedures on child with cancer-related issues that ensures professionalism and confidentiality.

– Facilitating the provision of appropriate support and guidance to children with cancer.

– The creation of the best possible family environment for children with cancer .


• Through our various events and programmes (your parents’ group name) hopes to:

– Encourage children with cancer to freely voice their thoughts and opinions and educate them on their rights

– Help vulnerable children with cancer overcome fear, stress and anger, and build self-esteem

– Teach and engage children with cancer in religion and culture, music, sports, arts and crafts

– Raise public awareness on children with cancer’s rights and the current situation of children with cancer (insert your country’s name here).


http://www.arc.org.mv/?page=content&topic=abtus

• Ethiopian parent of a child with cancer speaking in a nascent parent group meeting:

“We have nothing”

How to Accomplish all THIS?

• Personal

– In the hospital advocating for your child to get more pain relief

• School

– Providing information on childhood cancer to the staff and pupils of your child’s school

• Community

– Sponsoring a walk to raise funds and awareness of childhood cancer

• National

– Advocating with government officials to provide the funding for adequate supplies of chemotherapy in your public hospitals

• International

– Advocating with international pharmaceutical companies and non-profit organizations to put children with cancer first and not last.

Levels of Advocacy

• In-person – Going to a physician in person to insist that your child have improved pain

control

– Role model for other parents who may not feel they can speak up!

• Supporting others in-person – Helping to create a parents’ support group since many voices are harder to

ignore than a single one

– Accompany a friend to their child’s hospital visit to ensure they get the best attention

• Teach them your “insider” knowledge for making a hospital visit as sane as possible for the child and family!

Levels of Involvement

• Research – Investigating online for opportunities for

• Being heard

– Conferences, public hearings, speeches on children’s health and rights (be in the audience)

• Being funded

– Traditional groups that serve persons with cancer

– Non-traditional groups that serve children, children’s rights, children’s health

• Being joined

– Find groups with similar missions who might agree

» to join your work

» to accept donations in their country for your project

Levels of Involvement

• aka corporate conscience, corporate citizenship, social performance, or sustainable responsible business

– corporate self-regulation integrated into a business model

– To embrace responsibility for the company's actions and encourage a positive impact through its activities on the environment, consumers, employees, communities, stakeholders and all other members of the public sphere who may also be considered as stakeholders.

• A Shared Value model – Corporate success and social welfare are interdependent.

– A business needs a healthy, educated workforce, sustainable resources and adept government to compete effectively.

http://en.wikipedia.org/wiki/Corporate_social_responsibility

Corporate Social Responsibility (CSR)

• Danish law since 2009 that large companies must report CSR http://www.csrgov.dk/sw51190.asp

• “The 2004 Giving List, published by Britain's Guardian newspaper, showed that the charitable contributions of FTSE 100 companies (including gifts in kind, staff time devoted to charitable causes and related management costs) averaged just 0.97% of pre-tax profits.” http://www.economist.com/node/3555212?Story_id=3555212

Corporate Social Responsibility

http://www.csrgov.dk/sw51190.asp

http://www.economist.com/node/3555212?Story_id=3555212

http://www.guardian.co.uk/news/datablog/2010/sep/08/charitable-giving-country#

1) Australia/New Zealand

2) Ireland/Canada

3) Switzerland/United States

4) Netherlands

5) United Kingdom/Sri Lanka

6) Austria/Lao PDR/Sierra Leone

7) Malta

8) Iceland/Turkmenistan/Guyana

Criteria:

% giving money to charities

% who have volunteered time for

an organization in the past month

% who have helped a stranger

In the past month

• Association for Progressive Communications – Advocacy Strategies and Approaches: Overview

• Policy monitoring and public accountability

– Almost all effective policy-related advocacy efforts commence with observation and monitoring of the implementation and effectiveness of policies already in place.

Advocacy Strategies

http://www.apc.org/en/node/9456

• Policy dialogue

– gaining traction for a childhood cancer agenda across a broader political and policy-making spectrum

– In India, in 1996, the National Campaign for People’s Right to Information (NCPRI) was founded by social activists, journalists, lawyers, professionals, retired civil servants and academics.

• Partnerships outside medicine and healthcare

Advocacy Strategies

• Gordon Morrison – World Child Cancer

• Common denominators to almost all successful advocacy campaigns.

– maintain clarity in communications

– goals should be clear and achievable

– messages should be compelling for those to whom they are intended

– calls to action should be specific and concise

– good planning and organisation must combine with the ability to mobilise broad coalitions of public and political support towards a common goal.

Advocacy Campaigns

Kiera Grace Foundation

Alex’s Lemonade Stand

Super Sibs!

Or just holding hands

• Passion

• Interest

• No contribution too small

• Pace yourself

– Diagnosis

– Treatment

– Survivor

• It’s a challenge but together we can go forward

Advocates come in many forms/shapes/sizes

We all need help!

university of california, san francisco school of nursing

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