Patient diversity resources

Cultural and linguistic diversity

• The Centre for Cultural Diversity in Ageing has a range of bilingual resources for use in a community and residential aged care setting.
• The Department of Health and Aged Care (Victoria) has information on cultural and linguistic diversity and improving health. There are resources relating to interpreter services, as well as a health translations directory.
• The Centre for Cultural Diversity in Ageing has palliative care information. There are various fact sheets in different languages relating to palliative care, carer needs, patient rights and more.
• Palliative care Victoria has multicultural palliative care resources, and information on Cultural responsiveness under their health professionals section.
• Queensland Health has various resources relating to interpreting and translating.
• From the Agency for Clinical Innovation. Listen to Dr Astrid Perry talk about the importance of consideration of culture in end-of-life care.
• The Palliative Care ACT toolkit Cultural approaches to death and dying (8.52MB pdf) sheds light on different cultures and cultural practices and how these may affect care at end of life. It is designed for paid carers but can also be a useful reference for the person receiving palliative care and their family members and other (unpaid) carers.
• From the Australian government Department of Health and Aged Care: Exploratory Analysis of Barriers to Palliative Care - Issues Report on People from culturally and Linguistically diverse Backgrounds (2019) which provides insight into the barriers and offers some promising approaches for the future.
• To understand the barriers to care and help to address them, the Australian Government Department of Health and Aged Care developed the Aged Care Diversity Framework and a series of action plans which includes:
• Actions to Support Older CALD People: a Guide for Consumers
• Actions to Support Older CALD People: a Guide for Aged Care Providers
• This article gives a comprehensive overview of culturally sensitive palliative care. Schuster-Wallace CJ, Nouvet E, Rigby I, Krishnaraj G, de Laat S, Schwartz L, et al. Culturally sensitive palliative care in humanitarian action: Lessons from a critical interpretive synthesis of culture in palliative care literature. Palliat Support Care. 2022;20(4):582-92. (subscription needed)
• Learning modules:
• Palliative Care Curriculum for Undergraduates (PCC4U): Topic 4 Culture-Centred Care is an online learning module that will help you to understand culture in caring for people with a life-limiting illness and apply the principles of culture-centred care.
• End of Life Law for Clinicians (ELLC) has a free online training module for nurses and other health professionals about Inclusive end of life decision-making for diverse populations (2023). It centres on decision-making and includes a focus on people from culturally and linguistically diverse and/or refugee backgrounds.
• From the Palliative Care Network of Wisconsin you can access Fast Facts:
• Asking About Cultural Beliefs in Palliative Care #216
• Use of Interpreters in Palliative Care #154
• Cultural Aspects of Pain Management #78

Homelessness

• The Marie Curie (UK) website has information on Caring for people experiencing homelessness in palliative care.
• Researchers from the Marie Curie Palliative Care Research Department at UCL, St Mungo's and Pathway have developed the Homeless Palliative Care Toolkit, a resource pack with practical tools and templates for supporting homeless people at end of life.
• Many nursing services will work alongside services for the homeless to help people who may need care. Bolton Clarke has information on their website that gives examples of how they help.
• The Council to homeless persons website has a summary of some of the issues faced by those who are homeless.
• Street Smart Australia (Action against homelessness) raise funds to support smaller organisations that carry out vital work.
• Homelessness Australia provide advocacy for the homelessness sector.
• From the Australian Government Department of Health and Aged Care: Exploratory Analysis of Barriers to Palliative Care - Issues Report on People Experiencing Homelessness (2019) explains the barriers to accessing care and some promising approaches.

People with intellectual disability

• Talking End of Life with people with intellectual disability (TEL) is designed for disability support workers but may be helpful for health professionals. It shows you how to teach people with intellectual disability about the end of life.
• The Marie Curie (UK) website has information and practice tips relating to
• Palliative care for people with learning disabilities
• Mental capacity in palliative care.
• Better Health Channel Victoria - End of life and palliative care for people living with a disability offers a range of information around planning and care options.
• From the Australian Government Department of Health and Aged Care: Exploratory Analysis of Barriers to Palliative Care – Issues Report on People with Disabilities (2019) describes the barriers to accessing care and offers some promising approaches.
• Information can be found at the University of Hertfordshire website. While this information relates to the UK, it has some useful information and resources. Here you will find:
• Palliative care and intellectual disabilities
• Top ten tips for effective consultation
• Consent and people with intellectual disabilities: the basics
• Bereavement in the lives of people with intellectual disabilities

• The book End of life and people with intellectual and developmental disability (2022) edited by Stancliffe RJ, Wiese MY, McCallion P, McCarron M, presents both contemporary international research and its translation into practice. https://doi.org/10.1007/978-3-030-98697-1
• The chapter Palliative Care and Intellectual Disability in Textbook of Palliative Care (2019), provides a comprehensive overview. https://doi.org/10.1007/978-3-319-77740-5_69
• From the Palliative Care Network of Wisconsin you can access Fast Facts:
• Palliative care for adults with developmental disabilities #192
• Decision making for adults with developmental disabilities near the end of life #193
• Palliative care for patients with Down Syndrome #243

Lesbian, Gay, Bisexual, Transgender, Intersex, Queer and Asexual (LGBTIQ+)

Palliative care and end-of-life care for LGBTIQ+ communities

• The Marie Curie (UK) website has information about palliative and end of life care for LGBTQ+ people.
• The LGBTQIA+ inclusive palliative care toolkit (9.19kb pdf) from Palliative Care ACT provides information and resources to help carers and health professionals provide care to people from LGBTQIA+ communities who have a life-limiting illness. It may also be a useful resource for family, friends and unpaid carers.
• LGBTIQ+ Health Australia Palliative Care 11 Tips Poster provides you with 11 points to consider for LGBTIQ+ inclusive palliative care. You can use the poster in your workplace.
• End of Life Law for Clinicians has launched a new free online training module for all health professionals about Inclusive end of life decision-making for diverse populations. It centres on decision-making and includes a focus on people who are LGBTIQ+.
• Visit the ELDAC website to learn more about the older members of the LGBTIQ+ community and resources to help them as they approach the end of their life.
• Reports re barriers to and facilitators of inclusive care
• From LGBTIQ+ Health Australia, a scoping review: Palliative and end-of-life care for LGBTIQ+ people (878kb pdf) (2022).
• From the Australian Government Department of Health and Aged Care: Exploratory Analysis of Barriers to Palliative Care – Issues Report on People who Identify as Lesbian, Gay, Bisexual, Transgender or Intersex (2019) describes the barriers and offers some promising approaches.
• From Marie Curie (UK) “Hiding who I am” The reality of end of life care for LGBT people (1.27MB pdf) (2017) explores why LGBT people experience significant barriers to getting palliative care when they need it.
• From the Dying Matters (UK) website: End of Life care for LGBT people is a video that highlights what is important during end of life care for LGBT people.
• A European Association for Palliative Care (EAPC) task force from 15 countries has published Providing LGBT+ Inclusive Palliative & End-of-Life Care - recommendations for health and social care practitioners, organisations, and policy makers. These recommendations bring together evidence and examples of good practice utilised in these countries.

Aged care for LGBTIQ+ communities

• The Mosaic app can help LGBTI people to better plan and manage their aged care services and improve overall health outcomes. It contains resources for LGBTI people, their partners, families of choice, aged care workers, and aged care service providers.
• Silver rainbow - Ageing and Aged Care hosts resources to help aged care services to be inclusive of the diverse genders, bodies, sexualities and relationships of older Australians.
• To understand the barriers and help to address them, the Australian Government Department of Health and Aged Care developed the Aged Care Diversity Framework and action plans which include:
  • Actions to Support LGBTI Elders: a Guide for Consumers
  • Actions to Support LGBTI Elders: a Guide for Aged Care Providers.

General health care for LGBTIQ+ communities

• Rainbow Health Australia support lesbian, gay, bisexual, trans and gender diverse, intersex and queer (LGBTIQ) through research and knowledge translation, training and service accreditation through the Rainbow Tick.
• The LGBTIQ+ Health Australia has a Knowledge Hub of resources for the workforce, the community and also has a search facility.

Living Alone

• The Better Health Channel Victoria, provides useful information about services and caring for those with dementia. See their section Dementia support for people who live alone.
• The Marie Curie (UK) website has information on Looking after yourself if you live alone.
• From the Australian Institute of Family Studies: Demographics of Living Alone (Australian Family Trends No. 6) shows the trends of those living alone in Australia and also compares this with other countries.

Mental Illness

• The Department of Health and Aged Care has information and resources on Mental Health, including access to services and how to get help now. It is important to note that each State and Territory have their own Mental health Act which may impose limitations.
• SANE Australia has Factsheets and Guides on a range of mental health diagnosis and issues. They offer resources that may help including some facts and myth busting.
• The Beyond Blue website has a lot of information and resources on depression. They also run a podcast called Not Alone.
• The myDr website has information on: Mental Health. It includes tips for kids and meditation techniques to become more mindful.
• Embrace Multicultural Mental Health provides national leadership in building greater awareness of mental health and suicide prevention amongst Australians from culturally and linguistically diverse (CALD) backgrounds.
• Healthdirect has information for consumers on caring for someone with a mental health disorder. They provide a checklist on being an effective carer and how to look after yourself.
• The Australian Indigenous HealthInfoNet has the following resources:
• A review of the social and emotional wellbeing of Indigenous Australian peoples
• Health promotion resources including suicide prevention, coping with grief and loss, tackling anxiety and depression.

Older people

• palliAGED is the palliative care evidence and practice information resource for the Australian aged care sector.
• ELDAC provides information, guidance, and resources to health professionals and aged care workers to support palliative care and advance care planning to improve the care of older Australians.
• Silver Rainbow: Ageing and Aged Care hosts resources to help aged care services to be inclusive of the diverse genders, bodies, sexualities and relationships of older Australians.
• The Department of Health and Aged Care’s Aged Care Diversity Action Plans support the Aged Care Diversity Framework. They aim to help aged care service providers and older people address barriers faced by older Australians.
• End of Life Law for Clinicians has launched a new free online training module for all health professionals about Inclusive end of life decision-making with people from diverse populations. It centres on decision-making and includes a focus on people with frailty.
• Dementia Australia has information about dementia. Resources are for people with dementia and their carers.
• Office of the Royal Commission Background Paper 3 - Dementia in Australia: nature, prevalence and care This paper provides information on how best to care for people living with dementia.

Paediatrics

• Here is a list of the Australian State Paediatric Palliative Care Services:
• Queensland Children's Hospital (Qld)
• Royal Children’s Hospital (VIC)
• Sydney Children’s Hospital Randwick (NSW) Palliative Care
• The Children’s Hospital at Westmead (NSW) Palliative Care
• John Hunter Children's Hospital (NSW)
• Women’s and Children’s Hospital (SA)
• Perth Children’s Hospital (WA)
• Children’s Hospices Bear Cottage (NSW)
• Very Special Kids (VIC)
• Hummingbird House (Qld).
• The Palliative Care Australia website provides useful resources for health professionals and for carers at Paediatric Palliative Care. They link you with resources around the country.
• Quality of Care Collaborative Australia (QuoCCA) project delivers paediatric palliative care education to health professionals. Head to the bottom of the page and click on the box for learning resources for health professionals.
• The WA Cancer and Palliative Care Network provide the Paediatric and Adolescent Palliative care Model of care (2009) (394kb pdf). The Model of Care proposes that all children and adolescents with life-limiting illness, and their families, have access to specialist palliative care services in a timely manner.
• The International Children's Palliative Care Network has developed several short courses as part of a longer term strategy of providing eLearning programmes on children's palliative care.
• The US Children’s Hospice International promote the idea that children who are critically ill should have access to hospice/ palliative care form the time their life -threatening illness has been diagnosed, along with curative treatment.
• Bereavement Support is offered from Red Nose. They have a grief and loss support library, a 24/7 support line, as well as live chat options.
• To learn more about giving a critically ill child a life changing wish journey, visit the Make a Wish Foundation Australia website. Explore the many wish stories and use the how to apply button to refer a child.
• The Queensland Government provide information about Palliative Care for Children with Cancer in A practical guide to palliative care in paediatrics' (2MB pdf).
• The video 'Emily's story' is designed to support the learning activities associated with the focus topic 'Caring for children with life-limiting conditions' in the palliative care curriculum for undergraduates (PCC4U).

People with HIV

• The Victorian Government has generic health information on HIV / AIDS.
• For generic health promotion HIV / AIDS resources resources, the Australian Indigenous HealthInfoNet.
• Australian Federation of AIDS organisations has generic resources relating to HIV / AIDS.
• The Australasian Society for HIV Medicine (ASHM) resources include:
• HIV management in Australasia – A guide for clinical care.

Prisoners

• From the Australian government Department of Health and Aged Care: Exploratory Analysis of Barriers to Palliative Care - Issues Report on People who are incarcerated (2019) they give insight into the barriers and offer promising approaches.
• The Royal Australian College of General Practitioners Custodial health in Australia (2019) (1.36MB pdf) provides doctors and medical students with practical tips for providing healthcare in custodial settings.
• Melbourne University research blog: Caring for the terminally ill in prison offers useful insights into the challenges of caring for someone in the prison setting.
• Deeble Issues Brief No 45: Ensuring the quality of palliative care in Australia’s prisons (2022) highlights the gaps in available national data in relation to palliative care need and provision in prisons, and how data collection could influence policy change and service improvement.

Refugees and Asylum Seekers

• Find information regarding visas, community support programs and special humanitarian programs from the Department of Home Affairs visit Australia's Refugee and Humanitarian Program webpage.
• The Refugee Council of Australia has information on Australia’s Refugee Program has many resources and fact sheets relating to immigration and resettling in Australia.
• The Australian Human Rights Commission has information on Asylum Seekers and Refugees, that describes what an asylum seeker and refugee is and outlines their human rights.
• This resource is for use by doctors, nurses and other primary care providers to inform on-arrival and ongoing health care for people from refugee backgrounds, visit the Australian Refugee Health Practice Guide.
• The Forum of Australian Services for Survivors of Torture and Trauma (FASSTT) website has useful information and resources relating to the rehabilitation of those that are survivors of torture or trauma who have come from overseas.
• From the Australian government Department of Health and Aged Care: Exploratory Analysis of Barriers to Palliative Care - Issues Report on Refugees (2019) gives an insight into the associated barriers and suggests some promising approaches for the future.
• The Australian Psychological Society has information in relation to Refugees and asylum seekers, they provide key points and suggest ways that individuals can get involved to support and advocate for refugees.