Mel Laan
South Australia Representative – ANZ-LCNF Steering Committee
Lung Cancer Nurse Consultant, Royal Adelaide Hospital
and
Sam Kourakis
Cancer Nurse Consultant Aboriginal Health, Royal Adelaide Hospital
Lung Cancer is the most diagnosed cancer among Aboriginal and Torres Strait Islander people, and the leading cause of cancer related mortality [1]. The disparity in the burden of cancer care between Aboriginal and Torres Strait Islander people and non-Indigenous Australians is well documented. This population has lower cancer screening rates, presents at a later stage at diagnosis and experiences reduced treatment uptake in comparison to non-Aboriginal Australians [2].
Aboriginal and Torres Strait Islander lung cancer patients and their family/carers often face both the initial fear of a cancer diagnosis as well as the uncertainty of needing to temporarily relocate to access treatment. Being away from family and their culture adds to their anxiety related to diagnosis and impending treatment. This is in addition to the logistical considerations such as transport, parking, accessing the traditional food they would normally eat, clothing, laundry, access to free phone calls. Another cause for considerable stress for many is the inability to have easy access to personal funds. The added anxiety of not being able to financially provide for family can negatively affect the Aboriginal and Torres Strait Islander person’s ability to complete their treatment schedule due to increasing family obligations and stress. Limited or no on-site access to financial institutions whilst accessing treatment for their lung cancer precipitates this.
Aboriginal people may often have “business” to take care of – meaning they are needed back home for significant ceremonial obligations or for their role in important decision-making processes. These cultural obligations are vitally important to Aboriginal people as they are so family focussed, with tradition and culture often outweighing their own need to receive treatment. What is important to Aboriginal and Torres Strait Islander people is family, culture, tradition, spirituality, land, stories and I sometimes get the sense that what we are offering in the way of modern treatment and interventions is secondary. I have observed patients who appear not overly bothered when they become unwell from chemo with the usual side effects such as nausea, fatigue, mucositis etc. They are resilient and they cope incredibly well with treatment, what they don’t cope well with is not being able to be present for family or cultural obligations so it’s something we are always mindful of when being involved with care coordination of more traditional people.
In South Australia, we try to assist with the feeling of a disconnect of their surroundings, food, language and interactions in our Aboriginal hostels. An example of this is Kanggawodli Caring House which is an Aboriginal-managed SA Health hostel that provides in-reach primary health, wellbeing and case management services for Aboriginal people (and their escort) who are in Adelaide for specialist care. Patients staying here have their transport organised for appointments and have meals included. There are also hostels which can accommodate young children so that family units can stay together.
At the Royal Adelaide Hospital, we are fortunate to have a dedicated Aboriginal & Torres Strait Islander Liaison Health and Wellbeing Hub pictured. It is welcoming and a peaceful environment for our patients and visitors from diverse Aboriginal backgrounds and rural locations. The space has computer access, telephone, tea and coffee and sandwiches as well as providing a dedicated garden featuring Aboriginal artwork and native plants that promote healing and connection to culture and country. Through this area Health Practitioners can arrange for Traditional Healers and Ngangkari when available.
Tips for working with Aboriginal and Torres Strait Islander people [3]
- Build trust and develop rapport – ask if you can Yarn – ask them their story.
- Effective communication – verbal and non-verbal. Engage interpreters whenever necessary.
- Ask the patient who is the right person culturally to make decisions and give consent. This may not be an individual decision – it may be guided by community consultation with Elders and extended family members.
- Understand the kinship system and how it can structure people’s relationships, obligations, and behaviours towards one another.
- Engage with Aboriginal Health Practitioners, Aboriginal Health Services, and community services
- Be mindful of gender issues (men’s business/women’s business) – it is vital to establish if the patient wishes for this to be respected.
- Listen to your patient and their family/carer. Be comfortable and prepared for long silences.
References:
1. Australian Institute of Health and Welfare (2021), Cancer in Australia, Canberra: Australian Institute of Health and Welfare.
2. Australian Institute of Health and Welfare & Cancer Australia. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series # 78 Dec 2018.
3. Adapted from Western Adelaide Palliative Care – Queen Elizabeth Hospital, South Australia, 2016.