IPEPA offers learning opportunities for healthcare professionals and providers with a pathway to develop and enhance skills, knowledge and confidence in the palliative approach to care.
Each PEPA jurisdiction works with Aboriginal and Torres Strait Islander community to yarn about what is palliative care. From those conversations more is learned about what community wants from palliative care. The Aboriginal project officers and consultants who work within IPEPA co-create palliative care material so as community can learn more about Aboriginal and or Torres Strait Islanders people experiences of palliative care.
IPEPAs resource Cultural Considerations: providing end-of-life care for Aboriginal and Torres Strait Islander peoples outlines practical considerations for providing person-centred palliative care for Aboriginal peoples, Torres Strait Islander peoples and their respective families, while being respectful of intercultural variations and individual choices.
Flyer Resource: Caring for your mob at the end of their life https://www.health.gov.au/sites/default/files/caring-for-your-mob-at-the-end-of-their-life.pdf
PEPA ACT with Clare Holland House was offered a generous opportunity from Greg Chatfield and his family to share in his story as he approached his finishing up. Greg was a ‘Kamilaroi’ man who grew up on Ngunnawal land. Greg and his family wanted mob to learn from his story. From their generous story telling the following resources were approved by Greg’s family for future learning and education.
Video 3 – Palliative Care – Caring for our mob at the end of their life (Runs 6:15)
Target Audience: Aboriginal and Torres Strait Islander community in ACT and surrounds.
Aim: Increase awareness of palliative care amongst the Aboriginal and Torres Strait Islander community in the ACT area. Introduces the palliative approach to care.
Video 4 – Palliative Care, Supporting Patients and Family (Runs 11:39)
Target Audience: Aboriginal and Torres Strait Islander Health Workers
Content: When to refer and how to best support a palliative patient and family who need Palliative Care.
Video 5 – Greg Chatfield’s Story (Runs 14:18)
Target Audience: Non-Indigenous healthcare workers/clinicians
Aim: Teaching video to begin to establish palliative care as a safe space for Aboriginal and Torres Strait Islander patients and families to enter. Greg’s story highlights the challenges Aboriginal and Torres Strait Islander patients and families face when needing care and then the added complexity of palliative care.
Video 1 – 30 sec commercial about MND
Target Audience: Aboriginal and Torres Strait Islander community
Aim: Increased awareness of MND
Video 2 – Motor Neurone Disease, What is it? (Runs 2:19)
Target Audience: Aboriginal and Torres Strait Islander workers and health workers
Aim: Increased awareness of MND for community and health care workers to know how to recognise and support a patient with MND
PEPA NSW Aboriginal project officer Nathan Taylor worked with the Aboriginal Health and Medical Research Council (AH&MRC) to develop a Journey to dreaming toolkit and Journey to dreaming diary to support the yarning and care about palliative care for Aboriginal communities in NSW. The grass roots resources were built by community for community and were completed with art from Madison Connors (nee’ Saunders) who is a proud and strong Yorta Yorta, Dja Dja Wurrung and Gamilaroi woman.
The first resource is the “My journey to dreaming diary” – which supports patients and carers a place to keep the personal and medical information which
includes mindful activities to prompt reflection, wellness, and gratitude.
The second resource is the Final Journey to dreaming toolkit – is purposed
to provide high quality information to help Aboriginal and Torres Strait Islander families and their healthcare workers provide family-centred palliative and end-of-life care for a loved one. It also contains some important information that might be useful for individuals needing end-of-life care.
The two resources can also be accessed at the AH&MRC website .
The Victorian Aboriginal Community Controlled Health Organisation (VACCHO) led the development of a palliative care resource in 2019 “Understanding the palliative care journey”.
The guide was designed as a companion guide to provide general information in assisting and gaining an understanding of what this palliative care ‘journey’ may hold for you, a loved one or someone you are taking care of.
The resource is also a contact guide for those who need to seek support or assistance during this journey. This can be through their Aboriginal health service, Aboriginal Health Worker, or Aboriginal Hospital Liaison Officer to link in with a palliative care service in Victorian local regions.
PEPA WA in association with the South West Aboriginal Community created an opportunity for an Aboriginal Palliative Care Yarning and Education session to discuss;
- What Palliative Care services provide
- What is available in the South West
- When and how to access the services
- Advance Care Planning
- Time to yarn to local palliative care services.
From this session a working party was formed which lead to the development of a culturally appropriate resource for the South West Community to explain palliative care. It is hoped that resource will assist the community to integrate palliative care into their care needs as the uptake of palliative care in the South West Aboriginal population was very low and referrals were often in the late stages of someone’s life. Limiting the level of support local teams can offer patients and families. A previous community engagement project was able to identify a lack of knowledge of services available and the stigma surrounding palliative care was large barriers.
This newly developed resource was launched in February 2021 and will support the South West community to increase their ownership and connection with palliative care services inclusive of the resource to feel culturally safe and welcome.
Click the link below to access the full resource.
Palliative Care Australia (PCA) has many resources important to Aboriginal and Torres Strait Islander palliative care also.
Videos to support communities uptake of Advance Care Planning, “Finishing Up – Advance Care Plans on Groote Eylandt” focuses on the people’s journey to understanding the importance of making Advance Care Plans about their ‘final days’ with health staff, family and friends.
The Elders of Groote Eylandt created a ground swell to ensure that its people are engaged in the advance care planning process after seeing traditional decision making had not disconnected from care and bereavement ceremony, and a number of community members leaving country for treatments without appropriate cultural supports or connection back to country. Click this link to watch this important video .
Additionally Discussing Choices – Indigenous Advance Care Plans – A Learning Resource acts as a culturally safe and practical case study for professional health, Aboriginal and community workers on ‘how to’ support and complete Advance Care Plans for end-of-life care in Indigenous communities. Click this link for this resource.
PCA funds the Palliative Care and End-of-Life Care portal within the Australian Indigenous Health InfoNet. The Palliative care and end-of-life portal is designed to assist the health workforce who provide care for Aboriginal and Torres Strait Islander people, their families and communities. It seeks to support both clinicians and policy-makers in accessing resources, research and projects on palliative and end-of-life care for Aboriginal and Torres Strait Islander people. Click the image below to see unlock the many resources within.
CareSearch supports Aboriginal and Torres Strait Islander palliative care also.
CareSearch is committed to providing evidence-based resources to support appropriate palliative care provision for Aboriginal and Torres Strait Islander peoples. This section of CareSearch brings together, and links to, a range of resources that can be used by the health care workforce to develop their skills and knowledge in providing palliative care for Aboriginal and Torres Strait Islander people. Click the image below to see unlock the many resources within.
Aboriginal & Torres Strait Islander Communication Cards
As dementia progresses, some people living with dementia may find it more difficult to communicate. The inability for a person with dementia to communicate what they want or need can be frustrating for both them and care staff. For an Aboriginal and Torres Strait Islander person with dementia, the communication barrier can be greater due to language and cultural differences with those providing care.
Communication aids such as illustrated cue cards may assist care staff to understand the care needs of the person and create opportunities to build trust and security while reducing anxiety. The ability to make a connection and engage with the person can also reduce feelings of loneliness and isolation.
The set of 58 illustrated cards are divided into eight categories:
- Personal Care
Each card has the English word and includes space on the back to write the word in the language of the person.
Carers can select the relevant card and use it to help communicate with the person they are caring for, enabling the person to be understood and understand their care is essential for a person’s independence and wellbeing.
Click the image below to access the cards online.