More Maori patients finding ways to access palliative care
More Maori patients and their whanau are finding ways to access palliative care
Resourceful and resilient Māori patients and their whānau are increasingly finding pathways through the numerous obstacles they face in order to access palliative care as the number of older Maori grows, evidence shows.
Recent research from the University of Auckland has highlighted that Māori patients and whānau face barriers in accessing palliative care services for reasons relating to tikanga, unfamiliar and complex services, health professionals avoiding or mismanaging the ‘hard conversations’ around the shift from active treatment to palliative care, and the cultural character of specialist palliative care services.
However many of the Māori patients and whānau involved in the study used a range of high level health literacy practices to inform their critical thinking and decision making. Health literacy is the ability to find, read and use health-related information to make decisions about one’s own health care. Palliative care is provided for people with life-limiting conditions. It focuses on quality of life rather than on cure.
Many of the palliative care providers interviewed for the University of Auckland’s research report, ‘Kia Mau te Kahu Whakamauru: Health Literacy in Palliative Care’ identified that palliative care was perceived as a “Pākehā service”. Small numbers of Māori staff in most organisations, the organisation of services, and even the physical structure of the buildings, points to the palliative care sector being not able to respond well to culturally specific needs.
The report indicates that some health professionals had a limited ability to help patients and their whānau understand what palliative care services could offer. While some staff had developed skills to address health literacy issues, these skills were not always reflected by their organisations.
Written resources distributed by palliative care services were reviewed with a health literacy lens, revealing a lack of plain language with lengthy sentences and complex paragraph construction, te reo being only occasionally used (and then not always correctly), medical and technical terms not being well explained, and that often these resources incorporated inappropriate pictures and diagrams. The study also noted the fact that it was rare for resources to be given to Maori and whanau in conjunction with oral discussion, a pathway regarded as best practice.
The report identifies that Maori patients and whanau will access the information they need from whatever resources are available to them, this often being wider whanau and their communities.
Kia Mau te Kahu Whakamauru was conducted by Dr Jacquie Kidd and others of the University of Auckland together with Workbase Trust, a health literacy provider. The authors gratefully acknowledge the funding provided by the Health Research Council of New Zealand and the Ministry of Health through the Māori Health Joint Venture Partnership.
The findings in the report parallel those from a sister study ‘Māori health literacy and communication in palliative care: Kaumātua led models’ which was undertaken by the Rauawaawa Kaumātua Charitable Trust Research Project Team (‘the Trust’) together with academics from Waikato University. This report can be accessed through www.health.govt.nz