Indigenous palliative care needs study 2002

The Commonwealth Department of Health and Ageing has initiated a national scoping study into the needs of Aboriginal and Torres Strait Islander peoples in the area of palliative care. The study is being done by consultants Kate Sullivan and Associates and will be conducted throughout 2002.

The primary aim of the study is to identify the palliative care services available to Aboriginal people and Torres Strait Islanders, find out how well these services work and whether they can be improved, and determine whether there are areas where needs are not being met. This information will be used to inform and improve the Commonwealth’s National Palliative Care Strategy, and identify areas where resources are most needed. The formal objectives of the scoping study are to identify:

1. Existing activities in palliative care for Aboriginal and Torres Strait Islander peoples at Commonwealth,State/Territory and community levels, including mainstream programs, which incorporate Indigenous components as well as Indigenous-specific activities.
2. Areas that could be enhanced or developed under the National Palliative Care Strategy at Commonwealth, State/Territory and community levels.
3. The particular needs of Aboriginal and Torres Strait Islander peoples for palliative care, taking into account the diversity of Aboriginal and Torres Strait Islander communities and the different needs of rural, remote and metropolitan communities.
4. Spiritual and cultural practices that relate to death and examine the extent to which these are being implemented in a culturally sensitive way, taking into account the diversity of settings and cultural beliefs.

The project recognises that Aboriginal and Torres Strait Islander communities’ experience of loss and grief is profoundly affected by socioeconomic disadvantage, high death rates, and past policies which have caused separation and loss. It also recognises the central place of family and of the land, and that cultural and spiritual beliefs are particularly important in providing appropriate palliative care services to Aboriginal people and Torres Strait Islanders.

The scoping study is overseen by a Steering Committee which includes Indigenous members from the Congress of Aboriginal and Torres Strait Islander Nurses and the Aboriginal and Torres Strait Islander Research Agenda Working Group. The team of consultants, headed by Kate Sullivan, also includes Indigenous researchers and interviewers with specialist skills and experience in working with Indigenous communities.

The project is being conducted in four parts. The first (stages 1-3), which will be completed in April 2002, includes a literature review and scoping study, conducted by telephone. A series of questions have been developed for state and regional agencies, service providers, and community organisations, to gather information about palliative care services in their regions. The aim of the phone survey is to find out who is doing what (including provision of appropriate training) to enable the Steering Committee and consultants to decide which communities should be visited later in the research.

The second part (stages 4-5, May-June 2002) will focus on methodology development and partnership development with the communities in which the consultants wish to undertake field work. Relevant ethics committees and community organisations will be asked to review the methodology.

Field work will be conducted during stages 6-7 of the project (July-October 2002). The purpose of the field work will be to record from the perspective of Aboriginal and Torres Strait Islander people their experience of existing palliative care services and the unmet needs they identify. The field work will include rural and remote areas and some metropolitan centres where services are often not appropriate to Aboriginal and Torres Strait Islander needs. The field work will be conducted by male and female team members and will provide for remuneration for local Aboriginal and/or Torres Strait Islander assistance. A question sheet will be posted to community organisations in selected communities that cannot be visited.

The final part, stages 8-9, will be the reporting phases. There will be several rounds of reporting and the final report will be in two parts – a detailed report for the Commonwealth Department of Health and Ageing, and a short ‘plain English’ report which will be made available to all communities and organisations that have participated in the study. It is expected that reporting will be finalised by March 2003.

Information about the study and the consultants can be obtained from http://member.telpacific.com.au/ksa/. A newsletter will be posted on the website and distributed to participating communities and organisations.

The consultants are keen to hear from people who are providing palliative care services to Indigenous people, and are particularly interested in examples that are considered good practice.

Kate Sullivan can be contacted at (02) 9810 5755 or 1800 810 575.