FormalPara Key Points

  • What Matters 2 Adults (WM2A)—a wellbeing measure that is culturally grounded in the values and preferences of Aboriginal and Torres Strait Islander people—is being trialed in cancer services across NSW, Australia; we present the experience of the South Western Sydney Local Health District, Cancer Services, as a case study.

  • WM2A is implemented by an Aboriginal Health Worker who uses it to identify and holistically support the wellbeing needs of patients undergoing cancer treatment.

  • Outcomes from the measure are used to deliver culturally responsive patient- and family-centered cancer care. Early results suggest the combined effects of the measure and a dedicated Aboriginal Health Worker are improving outcomes for Aboriginal and Torres Strait Islander patients.

South Western Sydney Local Health District, Cancer Services in Australia is one of four cancer services participating in an implementation trial of the What Matters 2 Adults (WM2A) wellbeing measure. Funded by the Medical Research Future Fund (MRFF 2007834), the trial aims to understand the contribution of Aboriginal and Torres Strait Islander culture and wellbeing to health. This collaborative project is co-led by Professor Kirsten Howard (The University of Sydney) and Professor Gail Garvey (The University of Queensland) and is conducted in partnership with The Cancer Institute New South Wales, Aboriginal Health Units, and cancer centers across four New South Wales Local Health Districts.

The WM2A measure is a new holistic wellbeing measure for First Nations adults. It is a strengths-based measure that is grounded in the values and preferences of Aboriginal and Torres Strait Islander adults and acknowledges the interconnectedness of family, community, and culture to the wellbeing of First Nations peoples. The WM2A measure consists of 32 items across 10 dimensions of wellbeing [1].

In this case study, we describe our experiences implementing the WM2A measure over the past 10 months in a large urban cancer center. At the time of writing, 26 First Nations cancer patients have participated in the trial. An Aboriginal Health Worker (Rebecca Murray) was employed to recruit trial participants, implement the measure, and work with Aboriginal and Torres Strait Islander patients to identify aspects of their wellbeing requiring attention and referral.

About Our Region and Cancer Center

South Western Sydney Local Health District serves around 820,000 people who live in seven local government areas to the southwest of Sydney, Australia. The district has six acute hospitals, 14 community health centers, and four public cancer treatment facilities. Much of the district is urban, but we also serve several regional towns and rural areas.

The district is highly multicultural, with approximately 50% of the population coming from language backgrounds other than English, with many people from Arabic, Vietnamese, and Chinese backgrounds. Approximately 1% of our population identifies as Aboriginal or Torres Strait Islander.

Our hospital employs two Aboriginal Liaison Officers who mainly support Aboriginal and Torres Strait Islander in-patients. However, most of our cancer patients are treated through outpatient services. Prior to the WM2A trial, Aboriginal cultural support for cancer patients was limited.

Factors Impacting Access to Healthcare

A history of colonization, oppression, and subjugation has translated to numerous inequities experienced by Aboriginal and Torres Strait Islander peoples today. The ongoing legacies of colonization, including systemic racism in healthcare, manifest in significant health challenges and numerous barriers to Aboriginal and Torres Strait Islander peoples accessing healthcare. This has resulted in a deep distrust in healthcare services and is often shaped and further fueled by negative experiences when accessing care, which often leads to a reluctance to access healthcare. Many Aboriginal and Torres Strait Islander patients do not feel safe to ask questions and speak up about the issues important to them. Aboriginal and Torres Strait Islander patients in our region also face the tyranny of distance and may travel for two or three hours to receive cancer care and treatment. To assist our patients with the challenges of distance, our local Aboriginal Land Council provides an invaluable transport service. Telehealth for pre-treatment screening also helps address some of the distance and transport barriers.

Aboriginal and Torres Strait Islander patients in our region typically prioritize the needs of their families ahead of their own personal health needs. Many will not hesitate to miss a chemotherapy appointment if they have a family issue that needs their attention. Our clinicians find this difficult to understand and may conclude the patients are challenging to treat.

Implementing the WM2A Wellbeing Measure

We implement the WM2A measure alongside the other assessments we use with all cancer patients—including the Edmonton Symptom Assessment Scale and Distress Thermometer. The WM2A is only implemented with Aboriginal and Torres Strait Islander patients and is implemented by our Aboriginal Health Worker (Rebecca).

All Aboriginal and Torres Strait Islander patients are approached to participate in this trial. Rebecca provides patients with information about the measure and, if the patient agrees, they complete the consent-to-participate form. The WM2A measure is implemented through an Aboriginal way of conversing, called yarning. The measure offers a structured way of asking questions and yarning about topics that can otherwise be difficult—like racism and hope for the future. Rebecca creates a safe space, with an environment of respect and trust, then uses the measure to encourage the patient to open up about things that are important to them. She allows plenty of time for patients to complete the measure.

Benefits of Using the WM2A Wellbeing Measure

One big advantage of the WM2A measure is the structure it provides for difficult conversations. It’s helpful for patients to understand that they are working through a questionnaire that will support clinicians in planning their care and treatment. It is a catalyst for establishing a trusted relationship that enables the cancer service to holistically support Aboriginal and Torres Strait Islander patients through their treatment. Anecdotally, we are observing how the WM2A is helping patients to agree and persevere with treatment.

WM2A is implemented in a conversational way by a non-clinical health worker who has a similar cultural background to the participant. We believe the non-clinical, culturally sensitive implementation and discussion about lived experiences are major elements of its success. Because of the connection and trust established, patients feel supported and do not feel judged or pressured to give a particular answer in a particular way. The cultural connection they share helps the patient to feel safe and “held.” This healthcare dynamic is different from the clinical setting, and it helps to give patients the confidence to talk about the things that are important to them.

The yarn and safe space provided by Rebecca present an opportunity for patients to put aside their fear and reflect on the things that matter to them. This strengths-based approach appears to be enhancing the wellbeing of patients and opening avenues of trust in the health service. Through the WM2A measure, we can navigate the space between patients and clinicians and anecdotally we are making a difference. For example, when implementing the measure, Rebecca asked a patient if he was experiencing nausea. He said “no,” then stopped and asked, “what is nausea?” In a typical clinical setting, that patient would be unlikely to ask for an explanation, and the clinician would be unlikely to notice the patient didn’t understand. Our patients will ask Rebecca questions they would never feel confident or comfortable to ask a doctor or nurse.

Another patient was reluctant to accept treatment and simply wanted to go home and die. All patients are free to make that choice, but there were things influencing this patient’s decision and the service could do better. Using WM2A, Rebecca uncovered many issues that were making it difficult for the patient to accept treatment. These issues were discussed, and Rebecca helped the patient to address them; the patient has since completed treatment, with a successful outcome.

Another patient was a 69-year-old woman diagnosed with stage 4 lung cancer and she wanted to complete the WM2A measure as she felt it included questions relevant to her. Given her diagnosis, this patient’s survey was remarkable. She showed a strong sense of her own wellbeing and was positive about her future. She talked about her grandchildren being her greatest pleasure. She was proud of her heritage and drew great strength from her community. Although this patient passed away shortly after completing the WM2A, she remained positive to the end. Her responses underpin a central theme of Aboriginal health and a holistic approach to care: we need to treat the person, not just the disease.

Cancer care needs to systematically identify and address the cultural, social, and emotional wellbeing of Aboriginal and Torres Strait Islander patients using culturally appropriate and safe measures, like the WM2A measure.