iCanCarePlan

Project description, aims, design and method

This program will address known deficits in quality of end-of-life care for culturally and linguistically diverse (CALD) people with cancer by providing evidence-based resources to improve person-centred end of life care for the 10.7M CALD Australians born overseas (6.2M) or had parents born overseas (4.5M) who may experience cancer. By doing so, the program directly addresses the priorities (Goal 3) and focus areas (Populations and Health Care Systems) for action in the NSW Cancer Plan. For people with cancer at risk of mortality or near the end of life, advanced care planning (ACP) supports the communication about the kind of care the person would consider appropriate if they cannot make their own wishes known in the future. ACP can improve quality of life by reducing hospitalisation, intensive care unit admission, invasive medical procedures close to death, and stress, anxiety and depression amongst patients and their families. ACP planning guides assist people to express their preferences for care and ‘scaffold’ how end-of-life communication occurs between the patient, family, and healthcare team. Such guides require cultural adaptation – beyond direct language translation – to address the cultural and ethnic factors that shape preferences regarding end of life care. Partnering with consumers and clinicians, the program will adapt ACP guides to make them more suitable for CALD consumers. The resulting outcomes will be increased capacity for people with cancer at the end of their life to be cared for in a way that meets other cultural, religious and spiritual preferences in a sustainable way.

Project aims

To address known deficits in quality of end-of-life (EoL) care for culturally and linguistically diverse (CALD) people with cancer.

Objectives

1. To determine the uptake of advanced care planning (ACP) amongst CALD people experiencing cancer and socio-cultural factors predicting uptake.
2. To establish barriers and facilitators to ACP amongst CALD people experiencing cancer and their clinicians.
3. To co-design cultural adaptations to current ACP guidance resources to support person-centred, high-quality EoL care.
4. To co-produce implementation guidance for cancer clinicians to support the use of adapted ACP resources.
5. To determine the impact of the adapted resources and implementation guidance on uptake of ACP and the psycho-social benefits for CALD consumers.

Design and method

Objective 1 will be addressed using a retrospective medical record audit.

Objectives 2-4 will be addressed using an adapted method of Experience-Based Co-Design (EBCD) to adapt ACP conversation guides to enhance end of life cancer care.

Objective 5 will be addressed by a pilot effectiveness-implementation trial to determine effectiveness of the adapted ACP resources on the number of CALD consumers who take up ACP, their quality of life and the associated psychosocial gains (reduced stress, anxiety and depression), in addition to clinician confidence in ACP with CALD consumers.