Indigenous Challenges and Bridging Awareness in the Program of Experience in the Palliative Approach

(PEPA) in the Northern Territory of Australia

AimThe Program of Experience in the Palliative Approach aims to improve the quality, availability and access to palliative care for people who are dying and their families, by improving the skills and expertise of health practitioners and enhancing collaboration between service providers.

BackgroundPEPA is a national program funded by the Australian Government Department of Health and Ageing since 2003. It aims to build workforce capacity for health care practitioners across rural, remote and metropolitan settings in the palliative approach to care through:

• Supervised clinical placements and other tailored experiential opportunities

The Palliative Care Journey illustrates the practical application of holistic care combined with traditional concepts to enhance quality of life for Aboriginal people.

Cindy Paardekooper, Professor Patsy Yates, Vinesh Oommen, John Carson and Natasha Myers.

AUSTRALIA1

Population: 22,155,400 2.3% Indigenous

Land area: 7,692,024 sq. kms

Life Expectancy:2

Women 82.5 years, Men 78.7 years

NORTHERN TERRITORY1

Population: 227,70028% Indigenous 45% reside in rural and remote regions

Land area: 1,349,129 sq. kms

Life Expectancy3: Women 69.2 years, Men 61.5 years

Conclusion • This project has seen strong outcomes for Aboriginal health care workers. Greater engagement has occurred with the Indigenous

population to improve end of life care as a result of PEPA education.

• Continued sustainability and momentum of PEPA within palliative care education and service delivery will assist Aboriginal client outcomes in remote areas.

1 Australian Bureau of Statistics 2009 Cat. 1301.0; 3101.0.

2 Expected life at birth in years for non-Indigenous people in Australia, Australian Bureau of Statistics 2005-2007 Cat. 3302

3 Expected life at birth in years for Indigenous people in Northern Territory, Australian Bureau of Statistics 2005-2007 Cat. 3302

• A range of pre and post placement activities to facilitate preparation for experience and promote transfer of learning into the workplace.

A key focus of the 2007–2010 triennium was increasing uptake by Aboriginal and Torres Strait Islander Health Workers and Indigenous Aged Care workers. The Community Outreach Program was developed to assist this in the NT.

Context• High level of chronic disease and morbidity,

high rate of mortality and low life expectancy amongst Indigenous people

• Minimal understanding of the concept of palliative care in many remote communities

• Many communities have a high level of social and economic dysfunction

• Aboriginal Health Workers (AHWs) have a complex and pivotal role in the community

• Obstacles for AHWs include cultural obligations and family dynamics, poor support for professional development and communication breakdown between non-Indigenous clinic staff and the Indigenous community

• NT has a sparse population over vast distances with climate extremes from tropical savannah to temperate desert.

Australian Aboriginal fl ag

Designed by Harold Joseph Thomas, a Luritja man and was fi rst fl own in Central Australia in 1971. Black represents the Aboriginal people. Yellow represents the sun; the constant re-newer of life. Red represents the earth and Aboriginal people’s relationship with the land. Red also represents ochre which is used in ceremonies by Aboriginal people.

Torres Strait Islander fl ag

Designed in 1992 by the Late Bernard Namok from Thursday Island. Green represents the land. Blue represents the sea. White represents peace. The

Dhari (headdress) represents Torres Strait Islander people and the fi ve pointed star represents the fi ve major island groups. The star also symbolises

navigation to represent the seafaring culture of the Torres Straits.

www.healthynt.nt.gov.au

Top Left: North & East Arnhem Land. Caring and sharing for the sick person makes the Yolngu connected and strong. Artist: Toni Barrapuy Wanambi & Dipililnga Marika & Wayawanga Marika.

Bottom Left: Katherine region; freshwater animals connected to the deceased person. Artist: Samuel M Assan.

Top Right: Tiwi people use of spears, armbands and pukumani pole for ceremony after someone passes away. Artist: Nina Puruntatameri.

Bottom Right: Central Australia; How the palliative care team works with the Aboriginal people and their families. Artist: Karina Penhall.

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The NT Aboriginal Palliative Care Model developed by Beverley Derschow in 2004 considers the key components for a holistic approach of culturally appropriate palliative care to Aboriginal people.

The six sections illustrate links between a patient, their family and the palliative care service providers.

Section 1: Focus on family is as important as the client. Both impact on each other.

400 digenous

4 sq. kms

Methodology

The NT Community Outreach Program was an innovative development based on PEPA Mentor’s Guidelines3 and PEPA Communication Guidelines4 to provide culturally sensitive, understandable education in a one-day workshop, through:

• Facilitation by an Aboriginal person as educator

• Embedment of the principles of providing culturally safe, sensitive and understandable education

• Consultation prior to education delivery, identifi ed as imperative for some communities

• Inclusion of specifi c aspects of Aboriginal traditions and culture

• Inclusion of realistic situations of Aboriginal settings, scenarios, patients’ journeys and stories relating to the Aboriginal way of life when “fi nishing up” 5

• Fundamental knowledge and practical interactive skills on symptom management, use of ambulatory aids, grief, bereavement and spirituality

• Time for refl ection, open discussion, yarning, two-way sharing of information and expression through artwork

• Stimulation of interest leading some to seek further skills and knowledge by undertaking a PEPA placement.

The PEPA clinical placements for AHWs required modifi cations based on PEPA Communication Guidelines 4 to accommodate cultural differences including:

• A structured written daily program for the period of placement

• Consistent and regular mentoring by experienced Aboriginal health staff

• The opportunity for AHWs to attend in pairs to enable peer support

• Support and assistance with the logistics of travel and accommodation.

Written surveys were conducted pre and post workshop and placement. Lower levels of English literacy contributed to low response rates for workshops. Evaluation included:

• Impact of the program: Exploring evidence of participant learning and the impact it had in improving knowledge and skills of participants.

• Sustainability: Examines the evidence of durability of program outcomes following the participants’ return to their workplace.

• Capacity building: Reviews the resources and strategies that participants, their employers and host site staff have found useful to assist learning and promote ongoing learning following the placement.

• Generalisability: Explores signifi cant lessons from the program that may be helpful for future initiatives.

Activities

• Workshops enabled engagement with AHWs and stimulated interest for some to seek further skills and knowledge by undertaking PEPA placements.

• Structured PEPA placements with consistent mentoring for AHWs contributed to positive outcomes.

Uptake

• >30 Indigenous communities and >37 non-government agencies participated (aged care and respite facilities, remote clinics, resource providers and Aboriginal controlled medical services).

• 10 community outreach workshops delivered in remote areas.

• 165 participants at remote workshops (83 AHWs and Aged Care workers).

• 18 AHWs completed a PEPA supervised clinical placement.

Outcomes: Community

• Feedback indicates post-workshop AHWs are more empowered by knowledge, skills and confi dence to provide, coordinate or facilitate appropriate and holistic end of life care.

• “Return to country” to “fi nish up” facilitated for seven clients in Maningrida, Elcho Island, Bulla, Timber Creek, Yarralin, Tiwi Islands and Yirrkala.

Outcomes:Service provision• Increase in communication between AHWs

and specialist palliative services is evident due to relationships built whilst on PEPA clinical placement.

• This project has observed greater engagement between specialist palliative services, AHWs, Indigenous care workers and remote stakeholders.

• Progress has been made in bridging the cultural gap between Indigenous communities and palliative care services. Workshops were attended by non-Indigenous and Indigenous people.

ResultsPEPA participants completed a survey questionnaire prior to their PEPA placement (pre-placement) and another survey three months after placement (post-placement). A total of 18 AHW placements were completed from January 2007 to June 2010 in the Northern Territory. Surveys contained statements and participants could select one response option from a 6-point Likert scale to show their level of agreement (1=strongly disagree, 2=moderately disagree, 3=disagree, 4=agree, 5=moderately agree, 6=strongly agree). They assessed the participants’ perception of their ability to provide care for people with a life-limiting illness, the extent to which the program objectives had been achieved, their experience of participating in the program and, through comparison of pre and post-survey results, the extent of change in participant perceptions.

In particular, key improvements included:

• An increase in participants’ perceived ability to confi dently identify interventions required by people in their care who had a life-limiting illness [Pre-placement, M = 3.89, SD = 1.18 (n=18); Post-placement, M = 5.23, SD = 0.83 (n=13)] (Figure 1).

• An increase in participants’ perceived ability to confi dently discuss end of life issues with people who had a life-limiting illness and their families. [Pre-placement, M = 3.67, SD = 1.33 (n=18); Post-placement, M = 5.08, SD = 0.95 (n=13)] (Figure 2).

• An increase in participants’ perceived ability to assess the ongoing needs of people in their care who had a life-limiting illness. [Pre-placement, M = 4.17, SD = 1.47 (n=18); Post-placement, M = 5.31, SD = 0.85 (n=13)] (Figure 3).

3 PEPA Project Team (2010). PEPA for Aboriginal and Torres Strait Islander Health Workers’ Mentor’s Guidelines. Queensland University of Technology: Brisbane.

4 PEPA Project Team (2010). PEPA for Aboriginal and Torres Strait Islander Health Workers’ Communication Guidelines. Queensland University of Technology: Brisbane

5 “ Finishing up” is a culturally appropriate term in the English language used to describe the process of dying by many NT Indigenous communities.

NT PEPA Painting The art of painting in Aboriginal culture is a well recognised form of communication. Stories and events have been communicated through generations by rock art and bark paintings.

The program commenced with a blank canvas. All Indigenous workshop and placement participants were invited to use it to communicate or share stories about palliative care.

Participants were given the opportunity to paint or express what they felt was signifi cant to them, what represented palliative care, death, the end of life journey or important issues to their tribe or area. The stories remain with the painting.

The Northern Territory Aboriginal Palliative Care Model‘Model design by Bev Derschow’

Section 2: Culture, kinship and country are priorities for Aboriginal people. Understanding of the importance of these is the basis of culturally appropriate care.

Section 3: The links between traditional Aboriginal culture, kinship and country.

Section 4: Both traditional cultural practices and western infl uences on client and family help the service provider to assess, identify and address needs.

Section 5: Ensure cross cultural awareness, culturally appropriate resources and fl exibility when communicating, to engage Aboriginal people and their family.

Section 6: The two key areas of spiritual and practical are closely interwoven, often with no clear delineation between them.

Darwin

Katherine

Tennant Creek

Alice Springs