Health literacy refers to the degree people can access and understand health information to make informed and appropriate health decisions. This report focuses on the health literacy experiences among Māori and their whānau carers who use palliative care.
There is a limited amount of New Zealand research into the Māori experience of palliative care and issues of access. The report focuses on gaining a better understanding of ways to increase access to, and the quality of, palliative care services for Māori patients and their whānau by strengthening health literacy.
It summarises the key points from two health literacy and palliative care research reports:
- Māori health literacy and communication in palliative care: Kaumātua-led models
- Kia Mau te Kahu Whakamauru: Health Literacy in Palliative Care - University of Auckland website.
The report also provides recommendations for actions to enhance Māori health literacy and access to palliative care.
The aim of the research projects documented in this report was to identify, from a health literacy perspective, issues for Māori and their whānau (extended family) in accessing palliative care services. By identifying these issues, the research was designed to contribute to better service delivery of palliative care and improved access to palliative care for Māori and their whānau.
The research projects took a primarily qualitative approach and involved literature reviews; interviews, hui (meetings) and/or focus groups with patients, whānau and health professionals and others involved in palliative care provision; and analysis of written resources provided by different palliative care services providers using a health literacy framework.
The Auckland and Bay of Plenty study interviewed 22 carers for 15 people – all but two had passed away by the time of the interview. Fifty-four kaimahi (staff) from organisations which provided palliative care were interviewed in ten focus groups. Six key informants including service managers, health team leaders and specialists were also interviewed. Interviewees were asked about their own experiences and perceptions of health literacy demands from their particular perspective.
The Waikato study carried out 21 interviews with kaumātua who were either whānau or close friends of people who had received palliative care, or in two cases patients. Five hui were also held with 39 whānau members representing 14 whānau groups. These too addressed people’s experiences with palliative care and health literacy demands. Three focus groups were conducted with palliative care kaimahi.
Both projects reviewed written resources provided by hospices, hospitals and other providers of palliative care. These were reviewed against literacy and health literacy criteria.
An observational study using record linkages explored palliative care patients’ use of emergency departments within the Waikato District Health Board was also carried out. Findings from that work are reported separately as they did not directly inform health literacy issues for Māori and their whānau.
Both studies included reviews of New Zealand and international literature on the experience of Māori and other ethnic groups. These are included in the original reports but are not included in this summary report, which focuses on the original research.
Seven overlapping areas for action are identified below, with associated recommendations:
- Guidelines and standards
- Prioritise the development of health literacy guidelines and standards that will address Māori health literacy priorities.
- Support and resource ongoing training of the palliative care workforce in cultural competence and health literacy (eg, communication skills based on adult learning principles and addressing biased attitudes that impact on interpersonal communication and practice) to ensure their capacity to foster health literacy knowledge and skill among Māori. This should be supported by management systems and processes that make explicit the expectations of culturally competent practice and building health literacy of Māori.
- Provide incentives and funding to encourage Māori palliative care workforce development at all levels and in a variety of roles. This should encompass professional development in health literacy for Māori already in the palliative care workforce, including those based with Māori community organisations.
- Recognise and support the valuable contribution of Māori community organisations to enhancing Māori health literacy and access to palliative care for Māori through adequate and ongoing funding.
- Encourage and fund the development of high-quality, Māori-specific written resources about palliative care and palliative care services.
- Develop tools to assist services and health professionals to communicate effectively about palliative care with Māori patients and their whānau.
- Use culturally relevant communication processes supported by accessible and relevant written resources in working with Māori patients and their whānau to improve health literacy.
- Service orientation
- Palliative care organisations develop meaningful partnerships with iwi and other Māori community organisations.
- Support and encourage Māori participation in palliative care services at the governance level, and ensure Māori expert advice at service policy levels.
- Involve Māori expertise and the range of relevant Māori organisations and providers in multidisciplinary palliative care teams and networks to better enable collective and coordinated ways of working, including coordinated transitions in palliative care.
- Integrate Māori worldviews, values, knowledge and practices into palliative care services to better ensure the cultural competence of services and thereby reduce health literacy demands for Māori.
- Embed a whānau-oriented approach within the palliative care system and services to ensure whānau-centred practice and support whānau involvement in care.
- Develop and evaluate models and resources to support Māori patients and their whānau to meet health literacy demands in palliative care.
- Develop, establish and evaluate Māori health navigator roles to support Māori health literacy in the palliative care context.
- Palliative care organisations provide support and guidance in the use of electronic resources, processes and communication (eg, internet, social media and eHealth) to maximise the benefits for Māori and ensure that the uptake and use of these resources does not lead to inequalities.
- Monitoring and evaluation
- Institute systems for the collection of quality ethnicity data in palliative care, and routine monitoring and reporting on Māori palliative care needs and equity of access to palliative care services for Māori (including the timeliness of referrals).
- Support the translational research in priority areas that will influence palliative care provision and health literacy for Māori.
- Addressing structural barriers
- Review health literacy demands made on patients and whānau by palliative care systems and services, and where possible reduce the burden of those demands.
- Undertake proactive measures to raise Māori awareness of palliative care services.