It's not special treatment That's part of the Treaty of Waitangi! Organisational barriers to enhancing the Aged Residential Care environment for older Maori and Whanau in New Zealand.

BACKGROUND: New Zealand's older Indigenous Maori people experience poorer health and reduced access to healthcare than their older non-Maori counterparts. Organisational factors (such as leadership or workforce) may influence the attitudes and perceptions of older Maori and their family (whanau) to use aged residential care services. Currently, there is a paucity of research surrounding the organisational barriers that impact the experiences of older Maori people who seek care in aged residential care (ARC) services. METHODS: This study used a Kaupapa Maori qualitative research approach that legitimises Maori knowledge and critiques structures that subjugate Maori autonomy and control over their wellbeing. Interviews regarding their experiences of care were carried out with older Maori (n = 30) and whanau (family) members (n = 18) who had used, or declined to use an aged residential care facility. Narrative data were analysed inductively for themes that illustrated organisational barriers. RESULTS: The key organisational theme was 'Culturally safe care', within which there were three barriers: 'Acceptability and Adequacy of Facility', 'Interface Between Aged Residential Care and Whanau Models of Care', and 'Workforce'. Collectively, these barriers emphasise the importance of an organisational approach to improving the quality of care delivered to older Maori and whanau in ARC. CONCLUSION: Fostering a collective culture of equity within ARC provider services and equipping healthcare leaders and staff with the skills and knowledge to deliver culturally safe care is critical to addressing organisational barriers to ARC.

Patients' and carers' priorities for cancer research in Aotearoa/New Zealand.

BACKGROUND: Discrepancies have been reported between what is being researched, and what patients/families deem important to be investigated. Our aim was to understand research priorities for those who live with cancer in Aotearoa/New Zealand, with emphasis on Maori. METHODS: Adult outpatients with cancer and their whanau/family completed a survey (demographics, selecting keywords, free-text comments) at Christchurch hospital. Quantitative and qualitative data were evaluated using standard statistical and thematic analyses, respectively. RESULTS: We recruited 205 participants, including both turoro/patients (n = 129) and their whanau/family/carer (n = 76). Partnership with Maori health workers enabled greater recruitment of Maori participants (19%), compared to the proportion of Maori in Canterbury (9%). Cancer research was seen as a priority by 96% of participants. Priorities were similar between Maori and non-Maori participants, with the keywords 'Cancer screening', 'Quality of Life' and 'Development of new drugs' chosen most often. Free-text analysis identified three themes; 'Genetics and Prevention', 'Early Detection and Treatment', and 'Service Delivery', with some differences by ethnicity. CONCLUSIONS: Cancer research is a high priority for those living with cancer. In addition, participants want researchers to listen to their immediate and practical needs. These findings may inform future cancer research in Aotearoa. MaORI TERMS AND TRANSLATION: Aotearoa (New Zealand) he aha o whakaaro (what are your thoughts) hui (gathering) mate pukupuku (cancer) mokopuna (descendent) Otautahi (Christchurch) rongoa (traditional healing) tane (male) te reo (Maori language) Te Whatu Ora (weaving of wellness, Health New Zealand) tikanga (methods, customary practices) turoro (patients) (alternative terms used: whanau affected by cancer or tangata whaiora (person seeking health)) wahine (female) Waitaha (Canterbury) whakapapa (genealogy) whanau ((extended) family, based on whakapapa, here also carer).

Psychosocial and financial impacts for carers of those with eating disorders in New Zealand.

BACKGROUND: Eating disorders (ED) can have profound effects on family members and carers. These impacts can be experienced across multiple domains and may contribute to the maintenance of ED symptoms. In the absence of any New Zealand studies quantifying this, and given country-specific differences in access to care and treatment, this study explores the psychosocial and economic impacts on those caring for someone with an ED in New Zealand. METHODS: Carers (N = 121) of those who had, or still had, a self-reported ED (82.6% anorexia nervosa) completed an online survey open between December 2016 and October 2020, adapted to the New Zealand context. Questions addressed ED recency and recovery status of the individual cared for, treatment access, and the financial and psychosocial impact on the carer. Data analysis included descriptive statistics, with financial cost data converted to the equivalent of 2020 New Zealand dollars. RESULTS: Most (88.6%) recruited carers reported still caring for someone with ED symptoms of varying severity. A majority reported difficulty accessing treatment for the person they cared for, with a sizable minority (45%) paying for private treatment, despite few having private insurance. Carer losses typically included reduced income and productivity, travel costs, and other miscellaneous costs. Carers reported significant psychosocial impacts across a range of dimensions including family life, interpersonal relationships, and their own personal well-being. CONCLUSIONS: Carers in New Zealand report impacts which are far reaching and longstanding, covering their own personal and interpersonal well-being and that of those around them. While most of those they care for get access to public (free) treatment at some time or another, the wider financial and economic impacts on carers are significant, and likely to take years to recoup. Though not unique to EDs, interventions and supports for carers are much needed in New Zealand, alongside more comprehensive research methodology to further determine positive and other impacts of EDs over the long course of the caregiving role. HIGHLIGHTS: A majority reported difficulty accessing treatment for the person they cared for 45% paid for private treatment, despite few having private insurance Carers reported reduced income and productivity, travel costs, and other costs. Carers reported significant psychosocial impacts on family life, interpersonal relationships, and their own personal well-being. Carers provide a pivotal role in supporting treatment and recovery in their family member with the These findings will be relevant for funders and service providers in developing further approaches to address barriers and gaps in service provision to reduce impacts on carers, and as a result, those with eating disorders.

Caring for a person with any significant health or disability condition can have a harmful effect on the carer's own wellbeing. This study estimates this burden of caring for people with either ongoing ED symptoms or who have recovered, in New Zealand. The study recruited 121 carers, of whom almost all (97.5%) were parents, with most caregivers reporting impacts as this related to caring for someone with anorexia nervosa (82.6%).Overall, the results found widespread impacts on carers, particularly impacts on multiple relationships in their life, especially family relationships. These impacts extended to reporting harmful effects on the relationship with the person with the ED. Carers are also burdened by difficulties accessing treatment and wider economic impacts such as loss of income and productivity at work. As New Zealand's health system is relatively unique and this is the first quantitative study in New Zealand exploring ED carer impacts, larger studies are needed to capture the full extent of this in order to better meet these needs both at a health service and government level.

Eating disorders in New Zealand: Implications for Maori and health service delivery.

OBJECTIVE: Lifetime prevalence rates in Te Rau Hinengaro (The New Zealand Mental Health Survey) suggest eating disorders are at least as common in the Maori population as the non-Maori population, yet little is known at a population level about those accessing specialist mental health treatment for eating disorders in New Zealand. The aim of this study was to describe the population undergoing specialist mental health treatment for eating disorders and compare Maori and non-Maori clinical characteristics and service use. METHOD: This study uses the Programme for the Integration of Mental Health Data data set, managed by the New Zealand Ministry of Health to describe the characteristics of people with eating disorders and their use of specialist mental health services from 2009 to 2016. RESULTS: There were 3,835 individuals with a diagnosed eating disorder who had contact with specialist mental health services in this time period, 7% of whom were Maori. Within the cohort, Maori had a higher prevalence for a bulimia nervosa diagnosis, fewer diagnosed with anorexia nervosa, and a higher prevalence of other psychiatric comorbidity than non-Maori. DISCUSSION: There is discrepancy between the proportion of service users accessing specialist mental health services who are Maori and the assessed crude prevalence of eating disorders for Maori in national estimates. Once Maori are in specialist services; however, their use of services is comparable to non-Maori. Further research is needed to highlight the experiences of those Maori with eating disorders and address barriers to accessing services for Maori with eating disorders.

Is there systemic bias for Maori with eating disorders? A need for greater awareness in the healthcare system.

The New Zealand Mental Health Survey, Te Rau Hinengaro, indicated that eating disorders are at least as common in Maori as non-Maori, which is consistent with international findings that eating disorders exist in other indigenous and ethnic minority groups. Specific factors may be relevant to the development and treatment of eating disorders in the Maori population. We suggest this may include differential exposure to risk factors, the impact of acculturation, changing body image ideals and systemic bias reducing access to treatment and research participation. However, an absence of high-quality research regarding eating disorders in Maori makes it difficult to be certain about this. We suspect that Maori do not receive treatment in specialist eating disorders services at a level commensurate with comparable prevalence data in New Zealand and that a significant contributory factor to the apparent unmet need for Maori with eating disorders is likely to be systemic bias. Urgent attention to this area of research is required.