Cultural health literacy: the experiences of Maori in palliative care

Health literacy is a concept that is frequently applied to the patient's ability to find and comprehend health information. However, recent literature has included the skill of the health professional and the accessibility of health resources as important factors in the level of health literacy achieved by individuals and populations. In 2014 a qualitative study undertaken in Aotearoa New Zealand, investigated the context of health literacy for Maori in a palliative care setting (Maori are the indigenous people of Aotearoa New Zealand). The study included the experiences of patients, whanau (families), and health professionals. Method: Individual semi-structured interviews were held with 21 patients, whanau and six key informants: a medical specialist, a service leader involved in developing culturally specific responses to patients, two Maori service managers, and two Maori health team leaders. Focus groups were held with a total of 54 health professionals providing palliative care services. Data analysis: A thematic analysis was undertaken using a general inductive approach. The trustworthiness and reliability of the analysis was supported by sharing analysis of the transcripts among the research team. Member checking or respondent validation was used in seeking confirmation of the interim findings at five hui (meetings) with the research communities involved. Findings: This study found that the shock and grief that attends a life-limiting illness made hearing and processing health information very difficult for patients and whanau. Further, 'hard conversations' about moving from active treatment to palliative care were often avoided by health professionals, leaving patients and whanau distressed and confused about their choices and prognosis. Finally, poor cultural health literacy on the part of organisations has likely impacted on late access to or avoidance of palliative care for Maori.