Gippsland yarning provide keys to Aboriginal cancer survivorship

“Our culture has lifted me from where I was, ‘cause I was down here, now I’m back up here, and I give thanks to all the old fellas ‘cause they’ve given me strength in places I never thought even existed”

This quote illustrates how Aboriginal people’s culture plays a key role throughout their cancer treatment and recovery. The disparity in cancer outcomes for Australian Indigenous people is widening. Between 1998 and 2016, the cancer mortality rate for Indigenous people rose by 23%, while the rate significantly declined for non-Indigenous Australians.

A Monash University School of Rural Health project used Indigenous yarning to share  stories of 15 people diagnosed with cancer and/or those of family.

Conducted in two locations in the Gippsland region, the sessions were facilitated by an Aboriginal Elder known and respected by the community. The aim of the study was to explore the cancer diagnosis, treatment and survivorship experiences of Aboriginal people in Gippsland – and to identify factors needed to create a culturally appropriate model of cancer survivorship care.

The study, led by Dr Eli Ristevski and published in the Journal of Clinical Oncology, found that, cultural and family were important factors in Aboriginal people’s cancer treatment and many times, putting the needs of the family first and caring for sick family members were prioritized over than an individual’s own health. “There was “no time to grieve” for one’s own cancer diagnosis and look after oneself,” the report said..

“Cancer was a private experience.”

What also became clear from the study is that health professionals did not always understand the importance of people’s cultural and family supports in their treatment and recovery.

The study found that there were:

  • negative attitudes in hospitals when family come to visit, seeing family as too large and overstaying visiting times
  • health professionals did not seek family assistance with communication of information to family members whose literacy level was low
  • nor did they include family in treatment decision-making
  • access to services depended on family support with transport, finances, and family responsibilities, often resulting in lapses in treatment and follow-up services.

A total of 15 people participated in the study; four men and 11 women. Participants were between 30 and 70 years of age. Three had undergone cancer treatment and others shared stories about partners or family members diagnosed with cancer..

The two yarning circles in this study were different in process to reflect the dynamics of the participants in the group. One yarning circle used a “talking stick,” which when held, allowed that person to tell their story without interruption or comment. The other yarning circle was primarily a focus-group discussion during which participants raised topics and shared experiences. In each circle, Elders were invited to start the discussion.,

For Indigenous people in rural areas - geographical barriers and distance to available treatment, coupled with higher financial expenses and time away from family and Country, affect cancer outcomes and survivorship. The farther Indigenous people with cancer live from urban centres, the less likely they are to survive their disease.

The study concluded that there are significant gaps in the provision of culturally appropriate services to connect with Indigenous people, and in the understanding of Australian Indigenous perspectives of health and illness and social and cultural determinants of health.

Because communication strategies are ineffective between health professionals and patients and their families, Aboriginal Hospital Liaison Officers (AHLOs) are one part of a strategy to assist Indigenous patients and their families navigate the health system and to promote culturally appropriate practices to all staff in the health system.

FROM THE YARNING CIRCLES:

“Our culture has lifted me from where I was, ‘cause I was down here, now I’m back up here, and I give thanks to all the old fellas ‘cause they’ve given me strength in places I never thought even existed” (FG1, female).

“A spiritual side of that I think has brought us a lot of comfort. And that really healed some really gaping wounds in the kids too … So we talk about him like he’s still around, he’s still a part of our decision-making” (FG1, female).

However, culture has been severely affected by past and current government practices. The Stolen Generations, referring to when Aboriginal children were forcibly removed from their families and denied their culture, caused significant personal, social, and community angst.

Putting the needs of others first and caring for sick family members came before an individual’s own health or priorities. There was “no time to grieve” for their own diagnosis and look after themselves: “We go through these tragedies, whether they be health issues or, and they may not necessarily go through them ourselves, we still have to deal with it” (FG1, female).

There was recognition if one does not look after oneself, one could not look after others: “At one stage, I had 15 children in my house, always putting them first before myself. If I don’t start looking after myself, god forbid, if anything happened to me, who would do that?” (FG1, female).

*https://grics.com.au/living-with-cancer/cancer-in-gippsland/