Dementia among Minority Populations: A Scoping Review of Meaning, Language, and Translation.

BACKGROUND: Dementia as a neurocognitive disorder is becoming increasingly common worldwide, and minority groups are more vulnerable than the general population. Many factors may contribute to their vulnerability such as misconceptions, language barriers, cultural factors, invalid assessment tools, lack of knowledge, or assigning spiritual beliefs to dementia symptoms. Therefore, this scoping literature review aimed to clarify how empirical studies reflect the meaning of dementia, language, and translation among minority ethnic groups. SUMMARY: The PRISMA extension for the scoping review protocol was used. Thirty-eight studies published in English were reviewed and analysed. The findings revealed that lack of knowledge about dementia and attributing the disease to the normal ageing process were frequent among minority groups. Furthermore, their cultural-specific perspectives and worldviews of wellness and well-being can impact the way dementia is perceived, consequent help-seeking behaviours, or caregiving. Facilitating educational programs to enhance the knowledge and experiences of ethnic communities might be beneficial. Moreover, language is shown to be an important aspect in dementia assessment and participants' educational level could significantly impact their functional capacity when responding to cognitive measures. Even though there are some useful screening tests, diagnosis barriers might be eased by assessment tool development, modifications, and accurate translations for ethnic communities. KEY MESSAGES: A promising pathway to support ethnically diverse communities regarding dementia can be raising awareness, providing ethnic-specific services, developing cultural-specific tools to assess dementia or any cognitive impairment by considering perceptions, language, and culture among ethnic groups. Cultural and spiritual considerations could also encourage engagement during assessment.

The characteristics of behaviour change interventions used among Pacific people: a systematic search and narrative synthesis.

BACKGROUND: Pacific people living in New Zealand, Australia, United States, and the Pacific region continue to experience a disproportionately high burden of long-term conditions, making culturally contextualised behaviour change interventions a priority. The primary aim of this study was to describe the characteristics of behaviour change interventions designed to improve health and effect health behaviour change among Pacific people. METHODS: Electronic searches were carried out on OVID Medline, PsycINFO, PubMed, Embase and SCOPUS databases (initial search January 2019 and updated in January 2020) for studies describing an intervention designed to change health behaviour(s) among Pacific people. Titles and abstracts of 5699 papers were screened; 201 papers were then independently assessed. A review of full text was carried out by three of the authors resulting in 208 being included in the final review. Twenty-seven studies were included, published in six countries between 1996 and 2020. RESULTS: Important characteristics in the interventions included meaningful partnerships with Pacific communities using community-based participatory research and ensuring interventions were culturally anchored and centred on collectivism using family or social support. Most interventions used social cognitive theory, followed by popular behaviour change techniques instruction on how to perform a behaviour and social support (unspecified). Negotiating the spaces between Eurocentric behaviour change constructs and Pacific worldviews was simplified using Pacific facilitators and talanoa. This relational approach provided an essential link between academia and Pacific communities. CONCLUSIONS: This systematic search and narrative synthesis provides new and important insights into potential elements and components when designing behaviour change interventions for Pacific people. The paucity of literature available outside of the United States highlights further research is required to reflect Pacific communities living in New Zealand, Australia, and the Pacific region. Future research needs to invest in building research capacity within Pacific communities, centering self-determining research agendas and findings to be led and owned by Pacific communities.

Understanding anger with New Zealand-born Samoan youth: A Samoan qualitative exploration.

OBJECTIVE: Understanding New Zealand-Samoan young people's experiences and definitions of anger. METHODS: Focus group talanoa (discussions) with 12 New Zealand-born Samoan young people guided by 'Teu le Va' methodology. We used a culturally informed thematic analysis approach. RESULTS: Participants defined anger as a 'bottled up' emotion and emphasised understanding cultural contexts that normalised covert and passive ways of expressing anger. Other key themes around anger we identified included experiencing multiple layers of racism and disconnection in westernised social spaces and pressures to juggle traditional Samoan and western identities. Participants also explored gendered expressions of anger. Communicating anger was important, but not in ways that harm communal values. CONCLUSIONS: Culturally appropriate qualitative research helps understand complex cultural determinants of mental health and wellbeing and suicidal behaviour. IMPLICATIONS FOR PUBLIC HEALTH: We must recognise the positive, polycultural capital of a generation that navigates many cultural spaces, including their emotional expressions. Anger should be understood in relation to cultural and societal pressures. Improved understanding of the cultural context of anger can inform systemic responses during crises in mental health and prevention of suicidality.

Priority Health Needs and Challenges in New Zealand Pacific Communities-A Qualitative Analysis of Healthcare Delivery during the COVID-19 Pandemic.

BACKGROUND: The Pacific community in New Zealand experienced an increased risk of COVID-19 transmission due to delayed contact tracing, along with a disproportionate prevalence of health challenges. The community is representative of a diverse population who proudly identify with the vibrant Pacific Island nations of Samoa, Tonga, Cook Islands, Niue, Fiji, etc. Pacific communities in New Zealand face a higher burden of health challenges compared to other groups. These challenges include obesity, high blood pressure, diabetes, mental health disorders, respiratory issues, smoking, excessive alcohol consumption, disabilities, and chronic conditions. Concerns were raised regarding the oversight of Pacific community views in the initial pandemic response planning. Pacific healthcare professionals expressed concerns about inadequate state support and the need for active involvement in decision making. METHODS: This article reports thematic analyses of text data gained from open-ended questions from a purposive anonymous online survey completed by Pacific healthcare professionals in New Zealand. RESULTS: The participants shared their experiences and opinions, which generated four major themes highlighting priority health needs and challenges. These themes included the necessity for a culturally appropriate healthcare plan, adequate resourcing, addressing discrimination, and emphasising a united and collaborative effort for consistency. The research's limitation is the narrow scope of open-ended questions in the questionnaire survey. However, conducting semi-structured face-to-face interviews can provide more in-depth data and offer further insights beyond the four broad themes identified in the analysis. CONCLUSIONS: The findings can inform the development of future research to provide more in-depth data and offer further insights beyond the four broad themes identified in the analysis. This will help develop future tailored healthcare delivery plans that address specific Pacific community needs.

Living with Dementia in Aotearoa (LiDiA): A Feasibility Study for a Dementia Prevalence Study in Maori and Non-Maori Living in New Zealand.

INTRODUCTION: Recent estimations have projected a threefold increase in dementia prevalence in Aotearoa New Zealand (NZ) by 2050, particularly in Maori and Pacific peoples. However, to date, there are no national data on dementia prevalence, and overseas data are used to estimate the NZ dementia statistics. The aim of this feasibility study was to prepare the groundwork for the first full-scale NZ dementia prevalence study that is representative of Maori, European, Pacific and Asian peoples living in NZ. METHODS: The main feasibility issues were: (i) Sampling to ensure adequate community representation from the included ethnic groups, (ii) Preparing a workforce to conduct the fieldwork and developing quality control, (iii) Raising awareness of the study in the communities (iv) Maximizing recruitment by door-knocking, (v) Retaining those we have recruited to the study and (vi) Acceptability of study recruitment and assessment using adapted versions of the 10/66 dementia protocol in different ethnic groups living in South Auckland. RESULTS: We found that a probability sampling strategy using NZ Census data was reasonably accurate and all ethnic groups were sampled effectively. We demonstrated that we were able to train up a multi-ethnic workforce consisting of lay interviewers who were able to administer the 10/66 dementia protocol in community settings. The response rate (224/297, 75.5%) at the door-knocking stage was good but attrition at subsequent stages was high and only 75/297 (25.2%) received the full interview. CONCLUSIONS: Our study showed that it would be feasible to conduct a population-based dementia prevalence study using the 10/66 dementia protocol in Maori, European and Asian communities living in NZ, utilizing a qualified, skilled research team representative of the families participating in the study. The study has demonstrated that for recruitment and interviewing in Pacific communities a different but culturally appropriate approach is required.

Navigating digital inclusion and the digital va among Niue mamatua through the provision of mobile phones during COVID-19.

Technology and digital platforms have become essential for people and communities to interact because of COVID-19. Despite its benefits, digital exclusion disproportionately affects Pacific communities living in New Zealand. This article provides insights into how Niue mamatua (older adults) used their gifted mobile phones and mobile data as part of a COVID-19 digital inclusion initiative. It begins with an overview of the digital inclusion needs of older adults, followed by a description of the digital va (relational space) and negotiating a new way of maintaining connection in an online world. The tutala (a Niue method of conversation anchored on respect) with 12 mamatua highlighted the benefits, support factors, and challenges of how they were able to use their mobile phone. Importantly, mobile phones provided the necessary access and connectivity to interact in a digitally connected world, namely the digital va, when in-person connections were disrupted because of COVID-19.

Living with Dementia in Aotearoa (LiDiA): a cross-sectional feasibility study protocol for a multiethnic dementia prevalence study in Aotearoa/New Zealand.

INTRODUCTION: Aotearoa/New Zealand (NZ) is officially recognised as a bicultural country composed of Maori and non-Maori. Recent estimations have projected a threefold increase in dementia prevalence in NZ by 2050, with the greatest increase in non-NZ-Europeans. The NZ government will need to develop policies and plan services to meet the demands of the rapid rise in dementia cases. However, to date, there are no national data on dementia prevalence and overseas data are used to estimate the NZ dementia statistics. The overall aim of the Living with Dementia in Aotearoa study was to prepare the groundwork for a large full-scale NZ dementia prevalence study. METHODS AND ANALYSIS: The study has two phases. In phase I, we will adapt and translate the 10/66 dementia assessment protocol to be administered in Maori, Samoan, Tongan and Fijian-Indian elders. The diagnostic accuracy of the adapted 10/66 protocol will be tested in older people from these ethnic backgrounds who were assessed for dementia at a local memory service. In phase II, we will address the feasibility issues of conducting a population-based prevalence study by applying the adapted 10/66 protocol in South Auckland and will include NZ-European, Maori, Samoan, Tongan, Chinese and Fijian-Indian participants. The feasibility issues to be explored are as follows: (1) how do we sample to ensure we get accurate community representation? (2) how do we prepare a workforce to conduct the fieldwork and develop quality control? (3) how do we raise awareness of the study in the community to maximise recruitment? (4) how do we conduct door knocking to maximise recruitment? (5) how do we retain those we have recruited to remain in the study? (6) what is the acceptability of study recruitment and the 10/66 assessment process in different ethnic groups? ETHICS AND DISSEMINATION: The validity and feasibility studies were approved by the New Zealand Northern A Health and Disability Ethics Committee (numbers 17NTA234 and 18NTA176, respectively). The findings will be disseminated through peer-reviewed academic journals, national and international conferences, and public events. Data will be available on reasonable request from the corresponding author.

Navigating between illness paradigms: treatment seeking by Samoan people in Samoa and New Zealand.

There are substantial Samoan communities in New Zealand. Most Samoan people use both palagi (Western) and traditional Samoan health care. Western practitioners sometimes comment on Samoan patients' seemingly erratic patterns of seeking and using health care. Within a larger study on knowledge and the use of antibiotics, we carried out semistructured interviews with 31 Samoan people in Samoa and New Zealand.Accounts of participants' responses to illness and patterns of treatment seeking reveal how Samoan people draw on traditional and Western models of treatment and healing resources. Samoan people are very active interpreters of illness symptoms, using (at least) the two illness paradigms they know of to make sense of symptoms.These paradigms and systems of treatment are sometimes used experimentally, to determine whether illnesses are Samoan or Western. Symptom interpretation and decision making about treatment are done at the family level as well as the individual level. The individual might hold a particular view of what symptoms mean and what to do about them, but might not act on this if overruled or persuaded by other family members.

Pain, infection, and colds and flu: Samoan people's views about antibiotics.

BACKGROUND: Samoan people have access to and use both Western and traditional forms of healing. Little is known about their perceptions and use of healing agents. OBJECTIVES: To explore Samoan people's interpretation and use of a subset of Western medicines, namely, antibiotics, in Samoa and in New Zealand. METHODS: Semi-structured interviews were held with a purposeful sample of 31 Samoans, recruited through informal networks. Thematic analysis focused on understanding participants' perspectives on antibiotics using a phenomenological approach. Results from these interviews were used to develop a questionnaire administered to 232 Samoans recruited in health care facilities in Samoa and New Zealand. RESULTS: Participants were mostly females (57% of structured interview participants), and most (88%) were born in Samoa. Nearly half the sample had tertiary education. In Western terms, confusion about what antibiotics do and lack of clarity about which medicines are antibiotics were very common among the Samoan population. Antibiotics are commonly believed to be useful for colds and flu (75% of respondents) and were frequently used for these conditions. The distinctive features of the responses were the belief that antibiotics are pain killers (50%) and confusion between infection and pain. The confusion between antibiotics and pain killers may reflect a conflict between Samoan and Western concepts of illness. In the Samoan view, the lived experience of illness appears to be conflated with the illness itself; that is, pain is seen as an illness. CONCLUSIONS: The findings have implications for attempts to promote rational use of antibiotics either with individuals or as a part of public education campaigns. Such efforts may fail in some communities if they are based on the assumption that people share Western beliefs about what antibiotics are; what they do; and which illness have microbial, bacterial, or viral causes.

Understanding and use of antibiotics amongst Samoan people in New Zealand.

INTRODUCTION: Use of antibiotics is high in Samoa and this may affect the expectations and patterns of antibiotic use of Samoans in New Zealand. AIM: This study examined the understanding and reported use of antibiotics amongst Samoans in New Zealand. METHODS: In-depth interviews were held with 13 Samoans in New Zealand. These interviews were analysed and used to develop a questionnaire that was administered to 112 Samoans attending health care facilities in New Zealand. RESULTS: Many participants had little understanding of antibiotics. Less than 2% identified the correct purpose for antibiotics, and 66% thought they were used to relieve pain. Respondents regarded a wide range of medicines (including some which they regularly took) as antibiotics. They frequently attributed colds and flu to environmental conditions (96%), and regarded antibiotics as a useful treatment for them (81%). They reported stopping taking antibiotics before finishing the course. Very few (8%) were aware of antibiotic resistance. DISCUSSION: Health care practitioners cannot assume that patients share a Western scientific understanding of which illnesses are caused by microbes, or what antibiotics are or do. People may have significant confusion about the medicines they take. Samoans, whether they are born in New Zealand or not, may hold traditional Samoan views about health and illness.

Samoan youth and family relationships in Aotearoa New Zealand.

This paper examines the findings of data from two Health Research Council of New Zealand funded research projects, a quantitative survey (Adolescent Health Survey) and an in-depth qualitative study (Youth Mental Health Promotion) conducted concurrently in South Auckland, Aotearoa New Zealand. In an attempt to focus on the strengths of family relationships, we analyse accounts from young Samoans about their families and the role their families play in their lives. Findings suggest that most Samoan young people living in South Auckland are happy with their identity as Samoans and their knowledge and understanding of their Samoan culture. Participants in both studies indicated that they had positive, loving and caring relationships with their parents, siblings and other family members. Furthermore, family relationships were perceived to be strongly influenced by the values, structure and practices of the Fa'aSamoa.