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Aboriginal Well-being: A Cancer Journey of Healing

Project Added:
13 March 2015
Last updated:
25 March 2015

Aboriginal Well-being: A Cancer Journey of Healing 

Summary

"A Cancer Journey" booklets were developed in partnership with local Aboriginal people, Mid North Coast Local Health District (MNCLHD), the Medicare Local, Aboriginal Medical Services (AMS), North Coast Cancer Institute (NCCI), Cancer Council NSW and BreastScreen NSW.

The reader is navigated from reception through treatment of radiation and chemotherapy, using both text and photographs of the actual units. Aboriginal people within MNCLHD are true partners in the development, use and ongoing review of this educational resource. 

Aim

To generate "A Cancer Journey" booklets for Port Macquarie and Coffs Harbour, NCCI in partnership with the local Aboriginal communities and provide education regarding cancer and treatments and "demystify" the cancer journey.

Benefits

  • Improved patient journey and experience.
  • Improved outcomes for Aboriginal people with cancer.
  • Closing the gap on aboriginal health outcomes.
  • Shared decision making with patients as partners in healthcare.

Project Status

Project started:  2009

Project status: Sustained - the project has been implemented, is sustained in standard business. 

Background

The MNCLHD Aboriginal Well-being (Cancer) Roadshow, held in 2009, identified the need for improvement of the Aboriginal patient journey through cancer services.

Workshops identified one of the barriers for Aboriginal people is a lack of understanding of the cancer journey. This lack of knowledge can often make people fearful of the system and in some cases this can stop Aboriginal people from actively accessing the health care system for cancer treatment.

NCCI contacted Aboriginal Health for support and advice regarding patients who did not attend cancer treatment. Aboriginal workers within MNCLHD did not feel equipped to take referrals to support people through their cancer journey.

Implementation 

Monthly ‘yarn up’ sessions were held where participants (Aboriginal health workers, Medicare Locals, MNCLHD, AMS, Cancer Council, NCCI, Aboriginal community members) identified the barriers that exist in their local communities for Aboriginal people with a cancer diagnosis. These sessions informed the development of an action plan.

Recommendations

  • Develop culturally appropriate resources.
  • Raise community awareness regarding support service options.
  • Raise community awareness regarding treatment options.
  • Increase the knowledge of culturally appropriate support for staff and Aboriginal people accessing cancer services treatment.

Actions identified

  • Generate "A Cancer Journey" booklets for Port Macquarie and Coffs Harbour NCCI.
  • Show respect: Use culturally significant artwork and local people in the booklets.
  • Accommodate different health literacy levels.
  • Provide education sessions regarding cancer and the treatment types for Aboriginal health workers and community members.
  • Provide educational tours of the NCCI for Aboriginal health visitors and community members.

"A Cancer Journey" booklet was generated by and for Aboriginal people with local Aboriginal significant artwork and photos of local people. 

The development of the booklets has been a collaborative exercise between local Aboriginal people, MNCLHD, Medicare Local, Galambila, Durri, Werrin and Darrimba Maarra AMS, NCCI Coffs Harbour and Port Macquarie, Cancer Council NSW and BreastScreen NSW.

150 posters were generated advertising the booklets and where to obtain them displayed in general practice surgeries and AMS.

Respecting the Difference Aboriginal Cultural Awareness training and Identification training provided for 85 NCCI staff MNCLHD with flow on to the Northern NSW NCCI implementing this.

Cancer and cancer services education sessions were held with Aboriginal staff across multiple organisations to better prepare staff to support Aboriginal People going through diagnosis and treatment, and assisting Aboriginal people to better understand risks/prevention and treatment.

Participants monitored progress of the project management plan at monthly ‘yarn up’ sessions and allocated responsibilities to facilitate progress of the action plan between meetings. Shared decision making led to ownership of the booklets, the way they are used and importantly the messages they convey.

Results 

Aboriginal Well-being: "A Cancer Journey of Healing" project had a multifaceted approach also focusing on data quality and the prevention and early detection of cancer. 

Sustainability has been built into the achievements of the project. 

Key achievements

  • Improved engagement with Aboriginal People within the MNCLHD and the NCCI.
  • Culturally respectful Aboriginal "A Cancer Journey" local resource booklets developed for Coffs Harbour and Port Macquarie Cancer Services.
  • Collaborations were initiated and strengthened primarily as a result of the project.
  • Education and screening days were both initiated and strengthened: Walk the Talk with the Mob and the Men's Screening days.
  • Relay for life focus on raising the awareness of risk and the importance of screening for Aboriginal people.
  • National day celebration focusing on the Cancer Care journey for Aboriginal people ID training and Respecting the Difference training attended for NCCI in Coffs Harbour and Port Macquarie and a flow on effect with Northern NSW. 
  • NCCI also provided with Identification training.
  • Improved relationships between MNCLHD, Medicare Local, Galambila AMS, Darrimba Maarra AMS, Durri AMS, Werrin AMS, NCCI Coffs Harbour and Port Macquarie, BreastScreen NSW.

Patient satisfaction feedback 

" ... but now things have changed for the better, the booklet has helped me. It has great information resources for me, our people and other races of people,. It shows, there is help there, seek treatment early, and if you need to then read through this book because it has all the relevant information to help you ... "

Monitoring

Monitoring planned actions are ongoing via the Aboriginal Health Report Card prepared quarterly for the Close the Gap Board Sub-Committee.

The "A Cancer Journey" booklets are ongoing with annual review of the booklets during the NCCI educational tours, updates will include community feedback on ways to improve the resource.

Lessons Learnt

  • The large number of requests for the booklet by non-Aboriginal people accessing NCCI showed the health literacy embedded within the booklet crossed all cultures.
  • The Cancer Council NSW (CCNSW), the National Indigenous Cancer Network website and Australian Indigenous health infonet have requested electronic copies of the booklets for their websites, to be accessed for information but to also be used as an example/template for others.
  • The booklets were requested to be used as an example of best practice for the CCNSW / Aboriginal Health and Medical Research Council of New South Wales (AH&MRC) cancer awareness workshops. These were part of a NSW Ministry of Health funded Aboriginal Cancer Partnership Project between Cancer Institute NSW (CINSW), CCNSW and AH&MRC.
  • Collaboration was significant, questions were asked the answers were listened to and trust was built. There was openness through developing the booklet together, respect for artwork and stories which relate to our local communities. 
  • Aboriginal workers and community members became empowered to support each other through the Cancer Journey.

References

  • Closing the Gap in Cancer Care: Cancer Institute NSW Aboriginal Innovations Grant Program 2012.
  • Stumpers S, Thomson N.Review of cancer among Indigenous peoples. 2009.
  • Mid North Coast Local Health District, Operational Plan, 2012/13.
  • NSW Aboriginal Health Plan, 2013-2023, NSW Ministry of Health, 2012.
  • NSW Health Centre for Health Care Redesign- Methodology
  • Mid North Coast Local Health District, Aboriginal Well-being, Cancer Road Show, 2009.

Contact 

Dorothy Wilson
Manager Aboriginal Health Clinical Performance Review
Mid North Coast Local Health District
Phone: 02 6656 7057
Dorothy.wilson@ncahs.health.nsw.gov.au

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