Combining mHealth Technology and Pharmacotherapy to Improve Mental Health Outcomes and Reduce Human Rights Abuses in West Africa: Intervention Field Trial.

Background: In West Africa, healers greatly outnumber trained mental health professionals. People with serious mental illness (SMI) are often seen by healers in "prayer camps" where they may also experience human rights abuses. We developed "M&M," an 8-week-long dual-pronged intervention involving (1) a smartphone-delivered toolkit designed to expose healers to brief psychosocial interventions and encourage them to preserve human rights (M-Healer app), and (2) a visiting nurse who provides medications to their patients (Mobile Nurse). Objective: We examined the feasibility, acceptability, safety, and preliminary effectiveness of the M&M intervention in real-world prayer camp settings. Methods: We conducted a single-arm field trial of M&M with people with SMI and healers at a prayer camp in Ghana. Healers were provided smartphones with M-Healer installed and were trained by practice facilitators to use the digital toolkit. In parallel, a study nurse visited their prayer camp to administer medications to their patients. Clinical assessors administered study measures to participants with SMI at pretreatment (baseline), midtreatment (4 weeks) and post treatment (8 weeks). Results: Seventeen participants were enrolled and most (n=15, 88.3%) were retained. Participants had an average age of 44.3 (SD 13.9) years and 59% (n=10) of them were male. Fourteen (82%) participants had a diagnosis of schizophrenia and 2 (18%) were diagnosed with bipolar disorder. Four healers were trained to use M-Healer. On average, they self-initiated app use 31.9 (SD 28.9) times per week. Healers watched an average of 19.1 (SD 21.2) videos, responded to 1.5 (SD 2.4) prompts, and used the app for 5.3 (SD 2.7) days weekly. Pre-post analyses revealed a significant and clinically meaningful reduction in psychiatric symptom severity (Brief Psychiatric Rating Scale score range 52.3 to 30.9; Brief Symptom Inventory score range 76.4 to 27.9), psychological distress (Talbieh Brief Distress Inventory score range 37.7 to 16.9), shame (Other as Shamer Scale score range 41.9 to 28.5), and stigma (Brief Internalized Stigma of Mental Illness Scale score range 11.8 to 10.3). We recorded a significant reduction in days chained (1.6 to 0.5) and a promising trend for reduction in the days of forced fasting (2.6 to 0.0, P=.06). We did not identify significant pre-post changes in patient-reported working alliance with healers (Working Alliance Inventory), depressive symptom severity (Patient Health Questionnaire-9), quality of life (Lehman Quality of Life Interview for the Mentally Ill), beliefs about medication (Beliefs about Medications Questionnaire-General Harm subscale), or other human rights abuses. No major side effects, health and safety violations, or serious adverse events occurred over the course of the trial. Conclusions: The M&M intervention proved to be feasible, acceptable, safe, and clinically promising. Preliminary findings suggest that the M-Healer toolkit may have shifted healers' behaviors at the prayer camp so that they commit fewer human rights abuses.

The Effect of Community-Based Exercise on Health Outcomes for Indigenous Peoples with Type 2 Diabetes: A Systematic Review.

Indigenous peoples globally experience a high burden of type 2 diabetes in comparison to non-Indigenous peoples. While community-based exercise interventions designed for type 2 diabetes (T2D) management have garnered success in non-Indigenous populations, they likely require adjustments to meet the needs of Indigenous people. This systematic review aims to determine if health outcomes in Indigenous peoples with T2D could be improved by community-based exercise programmes and the features of those programmes that best meet their needs. The CINAHL, Embase, Informit Indigenous Collection, Medline, PubMed, Scopus, SportDiscus, and Web of Science databases have been searched to identify peer-reviewed literature with original outcome data that report on the health effects of community-based exercise interventions for the management of T2D among Indigenous peoples. The Mixed Methods Appraisal Tool and Indigenous Community Engagement Tool were implemented to assess methodological quality. Three moderate-to-high-quality studies were selected for review, including participants of Polynesian or Native American Zuni Indian descent. Results indicated positive effects of group exercise on glycated haemoglobin (HbA1c), body mass index, body weight, total cholesterol, blood pressure, quality of life, and patient activation levels in high-adhering participants. This review concludes that community-based exercise interventions may improve health outcomes for Indigenous adults with T2D when conducted with strong community engagement.

Editorial: Oral Health: luxury or a fundamental human right? The necessity of introducing a dedicated oral health budget and Proportionate Universalism in Greece.

Oral health is an integral part of overall health and critically affects quality of life as well as personal and social well-being. Poor oral health negatively influences general health and creates medical, financial and social burdens for individuals, families and health systems. The US Office of Disease Prevention and Health Promotion (2021) sees use of the oral health care system as a leading health indicator. Oral health improvement is an important step to reduce socioeconomic inequalities and promote the UN Sustainable Development Strategy (Wang et al., 2020, Huang and Chang 2022). Moreover, "achieving the highest attainable standard of oral health is a fundamental human right of every human being" (WHO 2022a).

Human rights and support groups to improve quality of life, self-care and disability in epilepsy: [Rights and support groups for epilepsy].

BACKGROUND: People with epilepsy have multiple barriers to recovering their quality of life. The objective of the present study was to determine the impact of a community group intervention focused on the components of mutual aid and human rights, to improve the quality of life in people with epilepsy. METHODS: Prospective quasi-experimental study, incorporating pre- and post-intervention evaluations. There were 102 people who underwent an intervention focused on the central components of mutual aid groups (Active agency, Coping strategies, Emotion recognition and management, Problem solving, Supportive interaction, Identity construction, Trust, and Social networks) and in the QualityRights strategy. As evaluation instruments, scales were used to determine quality of life (QOLIE-10), treatment adherence (Morisky Test), self-care behaviors, perception of disability and quality in the provision of health services. RESULTS: Correlations were shown between the variables proposed for quality of life. The intervention showed an improvement in all variables and a moderate to large effect in the self-care domain. There was a significant effect size in the self-care and quality of life variables with the intervention. Pharmacological adherence showed a moderate effect size in young people, adults and older adults. Regarding the perception of disability, the effect size was found only in adults. The pharmacological adherence variable also had a moderate effect size. This does specify the age groups, but not in the general sample. CONCLUSION: Seizure-free time constitutes a fundamental element in recovery. However, psychosocial conditions constitute key elements to achieve a better quality of life in people with epilepsy.

A comprehensive analysis of well-being frameworks applied in Australia and their suitability for Indigenous peoples.

PURPOSE: Well-being is a complex, multi-dimensional, dynamic, and evolving concept, covering social, economic, health, cultural and spiritual dimensions of human living, and often used synonymously with happiness, life satisfaction, prosperity, and quality of life. We review the existing key wellbeing frameworks applied in Australia both for the wider public and Indigenous peoples. The aim is to provide a comprehensive overview of various applied frameworks, along with a critical analysis of domains or dimensions comprising those frameworks, and to analyse the role of nature in those frameworks. METHODOLOGY: We conducted a critical analysis of the main frameworks applied in Australia to date to measure the well-being of the mainstream (mainly non-Indigenous) and Indigenous populations. This study is particularly timely given the Australian Government's interest in revising the well-being frameworks as mentioned in the Government "Measuring What Matters" statement. RESULTS: The existing well-being frameworks in Australia either overlook or hardly consider the role of nature and its services which are important to support human well-being. Likewise, for Indigenous peoples "Country" (Indigenous clan land) is vital for their well-being as their living is imbued with "Country". The role of nature/"Country" needs to be considered in revising the well-being frameworks, indicators and measures to inform and develop appropriate policies and programs in Australia. CONCLUSION: To develop appropriate welfare policies and programs for achieving socio-economic and other wellbeing outcomes, it is essential to evolve and conceptualize wellbeing frameworks (and related indicators and measures) in line with people's contemporary values, particularly considering the role of nature and its services.

Experiences and Outcomes of Indigenous Patients Undergoing Bariatric Surgery: a Mixed-Method Scoping Review.

Obesity and type 2 diabetes (T2D) are growing global health concerns. Evidence suggests that Indigenous peoples are at higher lifetime risk of obesity and its associated conditions. Obesity increases the risk of T2D, cardiovascular disease, and all-cause mortality. Bariatric surgery is the most sustained and effective intervention for treating obesity-associated medical problems. This review aims to explore the experiences and outcomes of Indigenous peoples undergoing bariatric surgery in Canada, the USA, Australia, and New Zealand (CANZUS). Analysis of quantitative data revealed that Indigenous patients had fewer bariatric procedures, poorer clinic attendance, similar weight loss outcomes and slightly higher post-operative complication rates. Qualitative data analysis revealed that Indigenous patients living with obesity have a desire to improve their health and quality of life.

Análise de redes aplicada a fatores relacionados à saúde bucal de populações indígenas / Network analysis applied to oral health-related factors of Indigenous populations

A análise de redes representa um conjunto de métodos e teorias com grande utilidade para descrever, explorar e compreender a estrutura de relações estatísticas em sistemas complexos de variáveis. Esta é uma importante ferramenta analítica com aplicações que variam desde análise exploratória até o desenvolvimento de intervenções. O objetivo desta tese foi mapear a arquitetura de interações entre fatores de saúde bucal de populações indígenas como sistemas de redes complexas. Este volume apresenta um compilado de quatro artigos científicos que investigaram: 1) o letramento em saúde bucal e fatores associados em uma população indígena australiana; 2) a validade estrutural do questionário Oral Health Impact Profile (OHIP-14) entre populações indígenas e não indígenas do Brasil e da Austrália; 3) as dinâmicas entre fatores relacionados à saúde bucal de crianças indígenas australianas ao longo do tempo; e 4) a habilidade de medidas de centralidade de uma rede transversal para predizer desfechos de saúde bucal longitudinalmente. Foram estimadas redes de correlação parcial, regularizadas, não direcionadas, baseadas em Modelos Gráficos Gaussianos. As propriedades de rede analisadas incluíram medidas de centralidade, coeficientes locais de agrupamento e coeficientes globais de agrupamento. A estabilidade das redes foi verificada através de um procedimento bootstrap de reamostragem. A Análise Exploratório de Gráficos foi utilizada para verificar a validade estrutural do instrumento de mensuração da qualidade de vida relacionada à saúde bucal. Foram analisadas as associações entre as medidas de centralidade de uma rede transversal com dados de mulheres grávidas e dois desfechos relacionados à saúde bucal de crianças indígenas mensurados aos 5 anos por meio de regressões lineares. Foi estimada uma rede que compreende as diferenças de pontuação dos desfechos relacionados à saúde bucal de crianças indígenas entre 2 e 5 anos ajustada pela rede de dados maternos. As correlações entre as medidas de centralidade dos modelos ajustado e não ajustado foram examinadas. Itens de letramento em saúde bucal pertencentes aos mesmos domínios conceituais da escala apresentaram fortes conexões positivas. Diferentes estruturas de rede emergiram para grupos de participantes que possuíam baixo e alto níveis de letramento em saúde bucal. A Análise Exploratória de Gráficos identificou quatro comunidades de nós referentes ao instrumento Oral Health Impact Profile em todas as amostras analisadas, embora populações indígenas apresentaram consistência estrutural reduzida em comparação com seus pares não indígenas. A intervenção de saúde bucal interagiu com a rede de fatores relacionados à saúde bucal por meio da percepção da saúde geral da criança e do conhecimento da saúde bucal infantil. Foram identificadas diferentes conexões entre experiência de cárie dentária e fatores relacionados à saúde bucal em cada fase do estudo. As redes tenderam a retornar a um estado inicial após a intervenção. Força foi a única medida de centralidade associada aos valores preditivos dos nós em relação aos desfechos de saúde bucal das crianças. Valores de Força explicaram 51% e 45% da variação nos valores preditivos dos nós em relação à experiência de cárie dentária e à utilização de serviços odontológicos aos 5 anos, respectivamente. Esta tese demonstrou diferentes aplicações da análise de redes no contexto da saúde bucal indígena. Fatores relacionados à saúde bucal de populações indígenas da Austrália e do Brasil emergiram como redes. Os achados empíricos apresentados contribuem para uma compreensão abrangente das múltiplas interações entre fatores relacionados à saúde bucal destas populações e apresentam implicações para a representação de construtos psicométricos, investigação de fenômenos em saúde bucal e desenvolvimento de intervenções.

Preference-based measures of health-related quality of life in Indigenous people: a systematic review.

PURPOSE: In many countries, there are calls to address health inequalities experienced by Indigenous people. Preference-based measures (PBMs) provide a measurement of health-related quality of life and can support resource allocation decisions. This review aimed to identify, summarize, and appraise the literature reporting the use and performance of PBMs with Indigenous people. METHODS: Eleven major databases were searched from inception to August 31, 2022. Records in English that (1) assessed any measurement property of PBMs, (2) directly elicited health preferences, (3) reported the development or translation of PBMs for Indigenous people, or (4) measured health-related quality of life (HRQL) using PBMs were included. Ethically engaged research with Indigenous people was considered as an element of methodological quality. Data was synthesized descriptively (PROSPERO ID: CRD42020205239). RESULTS: Of 3139 records identified, 81 were eligible, describing psychometric evaluation (n = 4), preference elicitation (n = 4), development (n = 4), translation (n = 2), and HRQL measurement (n = 71). 31 reported ethically engaged research. Reports originated primarily from Australia (n = 38), New Zealand (n = 20), USA (n = 9) and Canada (n = 6). Nearly all (n = 73) reported indirect, multi-attribute PBMs, the most common of which was the EQ-5D (n = 50). CONCLUSION: A large number of recent publications from diverse disciplines report the use of PBMs with Indigenous people, despite little evidence on measurement properties in these populations. Understanding the measurement properties of PBMs with Indigenous people is important to better understand how these measures might, or might not, be used in policy and resource decisions affecting Indigenous people. (Funding: EuroQoL Research Foundation).

Supported decision-making for older people living with dementia: contributions from bioethics. / Tomada de decisão apoiada para pessoas idosas que vivem com demência: contribuições da bioética.

The significant increase in the elderly population and the high incidence of chronic and degenerative diseases are a matter of concern with regard to issues inherent to promotion of autonomy and preservation of human rights and quality of life in this population group. Exercising the right to make a decision impacts various aspects of human life, such as health care, asset management, relationships, choice of housing, family care, religious activities and even daily routine activities. Supported decision-making (SDM) can be an important tool for promoting autonomy among elderly people living with dementia, as it consists of an approach based on respect for human rights, in which the aim is to establish control over the mechanisms for provision of support so that all people can exercise the right to make decisions inherent to their lives. In order to implement this more robustly in Brazil, it is fundamental to change the culture towards valuing elderly people and implementing the notion that protection involves offering mechanisms for promoting personal autonomy, which is partly achieved through encouragement of social engagement and strengthening community ties. In this regard, the notion of empowerment, based on concepts arising from Intervention Bioethics, is relevant.

O aumento significativo da população idosa e a alta incidência de doenças crônicas e degenerativas demandam preocupação com aspectos inerentes à promoção da autonomia, preservação de direitos humanos e qualidade de vida desse grupo populacional. O exercício do direito à tomada de decisão impacta diversos aspectos da vida humana, como é o caso dos cuidados em saúde, administração patrimonial, relacionamentos, escolha de moradia, cuidados familiares, atividades religiosas e até mesmo atividades diárias. A Tomada de Decisão Apoiada (TDA) pode ser importante instrumento para promoção da autonomia de pessoas idosas que vivem com demência, pois consiste em uma abordagem pautada no respeito aos direitos humanos, que visa instituir mecanismos de fornecimento de suportes para que todas as pessoas possam exercer o direito de tomar decisões inerentes às suas vidas. Para implementação mais robusta no Brasil, é fundamental a mudança de cultura, no sentido de valorização da pessoa idosa e da noção de que a proteção perpassa por ofertar mecanismos de promoção da autonomia pessoal, que se dá, em parte, pelo incentivo ao engajamento social e fortalecimento de laços comunitários. Nesse aspecto, a noção de empoderamento, pautada em concepções advindas da Bioética de Intervenção, mostra-se relevante.

Valuing indigenous quality of life: A review of preference-based quality of life instruments and elicitation techniques with global older indigenous populations.

Indigenous perspectives of quality of life (QoL) are different to that of non-Indigenous populations. Determining how to identify and value what is important to QoL for people from diverse cultural backgrounds is crucial for assessing effective outcomes for quality assessment and health economic evaluation to guide evidence-based decision making. This is particularly important for older Indigenous people who have complex care and support needs within health and aged-care systems. This scoping review aims to assess the existing literature in this field by firstly identifying preference based instruments that have been applied with older Indigenous peoples and secondly, exploring the extent to which existing preference based instruments applied with older Indigenous peoples encompass older Indigenous peoples QoL perspectives in their design and application. The inclusion criteria for the review were studies using preference based QoL instruments with an Indigenous population where the cohort was aged 50 years or over. This resulted in the critical analysis of 12 studies. The review identified that preference based QoL instruments have rarely been applied to date with older Indigenous populations with most instruments found to be designed for non-Indigenous adults. Typically, instruments have not incorporated Indigenous worldviews of QoL into either the content of the descriptive system or the elicitation techniques and corresponding value sets generated. To encapsulate Indigenous cultural perspectives accurately in economic evaluation, further research is required as to how QoL domains in preference based instruments for Indigenous peoples can be reflective of Indigenous perspectives. It is imperative that the QoL preferences of older Indigenous peoples are adequately captured within preference based QoL instruments applied with this population.

Expansion of Psychosocial Care Centers and their relationship with health and human rights.

OBJECTIVE: To analyze the factors associated with the expansion of the number of Brazilian Psychosocial Care Centers (CAPS) considering aspects related to the general health scenario and the institutionalization of human rights. METHODS: An analytical document-based study, developed between February 2020 and May 2022, whose secondary data on the 27 Brazilian capitals were collected on platforms in the public domain, based on the time series from 2015 to 2020. Indicators were listed based on health system infrastructure and quality of life. For data analysis, descriptive statistics, Pearson's correlation test and Student's t test were used. RESULTS: The capitals that expanded the number of CAPS in the analyzed period were the ones that presented the greatest political-legal framework for the protection of human rights. CONCLUSION: The results suggest that the greater the commitment of governments in favor of human rights, the greater the investment for CAPS expansion.

Identifying indicators sensitive to primary healthcare nurse practitioner practice: A review of systematic reviews.

AIM: To identify indicators sensitive to the practice of primary healthcare nurse practitioners (PHCNPs). MATERIALS AND METHODS: A review of systematic reviews was undertaken to identify indicators sensitive to PHCNP practice. Published and grey literature was searched from January 1, 2010 to December 2, 2022. Titles/abstracts (n = 4251) and full texts (n = 365) were screened independently by two reviewers, with a third acting as a tie-breaker. Reference lists of relevant publications were reviewed. Risk of bias was examined independently by two reviewers using AMSTAR-2. Data were extracted by one reviewer and verified by a second reviewer to describe study characteristics, indicators, and results. Indicators were recoded into categories. Findings were summarized using narrative synthesis. RESULTS: Forty-four systematic reviews were retained including 271 indicators that were recoded into 26 indicator categories at the patient, provider and health system levels. Nineteen reviews were assessed to be at low risk of bias. Patient indicator categories included activities of daily living, adaptation to health conditions, clinical conditions, diagnosis, education-patient, mortality, patient adherence, quality of life, satisfaction, and signs and symptoms. Provider indicator categories included adherence to best practice-providers, education-providers, illness prevention, interprofessional team functioning, and prescribing. Health system indicator categories included access to care, consultations, costs, emergency room visits, healthcare service delivery, hospitalizations, length of stay, patient safety, quality of care, scope of practice, and wait times. DISCUSSION: Equal to improved care for almost all indicators was found consistently for the PHCNP group. Very few indicators favoured the control group. No indicator was identified for high/low fidelity simulation, cultural safety and cultural sensitivity with people in vulnerable situations or Indigenous Peoples. CONCLUSION: This review of systematic reviews identified patient, provider and health system indicators sensitive to PHCNP practice. The findings help clarify how PHCNPs contribute to care outcomes. PROSPERO REGISTRATION NUMBER: CRD42020198182.

Advancing Epidemiology and Genetic Approaches for the Treatment of Spinal and Bulbar Muscular Atrophy: Focus on Prevalence in the Indigenous Population of Western Canada.

Spinal and bulbar muscular atrophy (SBMA), also known as Kennedy's disease, is a debilitating neuromuscular disease characterized by progressive muscular weakness and neuronal degeneration, affecting 1-2 individuals per 100,000 globally. While SBMA is relatively rare, recent studies have shown a significantly higher prevalence of the disease among the indigenous population of Western Canada compared to the general population. The disease is caused by a pathogenic expansion of polyglutamine residues in the androgen receptor protein, which acts as a key transcriptional regulator for numerous genes. SBMA has no cure, and current treatments are primarily supportive and focused on symptom management. Recently, a form of precision medicine known as antisense therapy has gained traction as a promising therapeutic option for numerous neuromuscular diseases. Antisense therapy uses small synthetic oligonucleotides to confer therapeutic benefit by acting on pathogenic mRNA molecules, serving to either degrade pathogenic mRNA transcripts or helping to modulate splicing. Recent studies have explored the suitability of antisense therapy for the treatment of SBMA, primarily focused on gene therapy and antisense-mediated mRNA knockdown approaches. Advancements in understanding the pathogenesis of SBMA and the development of targeted therapies offer hope for improved quality of life for individuals affected by this debilitating condition. Continued research is essential to optimize these genetic approaches, ensuring their safety and efficacy.

Pain management in indigenous and tribal peoples: a scoping review protocol.

INTRODUCTION: Effective and culturally safe pain management can facilitate analgesia and improve the quality of life. Individualised, multimodal and multidisciplinary approaches are highly recommended. There exist gaps in the knowledge on pain management, in terms of the assessment and/or treatment, in indigenous peoples and the currently available information is scattered in the literature. A scoping review will provide an overview or evidence map on the variety of approaches used in different cultures, in different parts of the world. METHODS AND ANALYSIS: The search strategy comprises three stages. The first stage identified the MeSH terms and keywords in PubMed. The second stage will consist of a search of MEDLINE, EMBASE, LILACS, CINAHL, Web of Science, APA PsycNet and Scopus, followed by a search in Google and Google Scholar, GreyGuide, ProQuest Dissertations and Theses, Theses Canada Portal (Library and Archives Canada), TROVE (National Library of Australia), Aboriginal and Torres Strait Islander Health Bibliography, and Cybertesis. The papers will be screened, selected and extracted independently by two researchers. Descriptive data analysis will be performed, and the results will be presented using a narrative summary, graphs, tables and figures. ETHICS AND DISSEMINATION: This review does not require ethical approval, as data from the literature available in databases will be collected and analysed. The protocol was registered at the Open Science Framework. The data on pain assessment and treatment in indigenous peoples will be presented through a narrative summary, figures, charts and tables. Results will be submitted to an open-access journal for publication and will be disseminated through scientific events, scientific meetings, public events and conversation circles with indigenous peoples.

Outcomes from a collaborative project developing and evaluating a community rehabilitation worker program for Northwestern Ontario First Nations.

INTRODUCTION: Major inequities exist in levels of health and wellbeing, availability, and access to healthcare services between seniors of Indigenous and non-Indigenous background in Ontario. First Nations elders are 45-55% more frail than the average senior in Ontario. Additionally, needed rehabilitation services are not easily accessible or available in the first language of most First Nations elders within their home communities. A literature review demonstrated community-based rehabilitation assistant models had been successfully developed and implemented in regions facing similar equity and access challenges. Building on these findings, a needs assessment was conducted to capture unique needs and requirements in Northwestern Ontario relating to rehabilitation among First Nations elders. METHODS: The needs assessment resulted in four First Nations, three Indigenous health organizations, three rehabilitation health organizations, and two academic institutions iteratively developing and evaluating curriculum for a Community Rehabilitation Worker (CRW) program in treaty territories 5, 9, and Robinson-Superior. The goal of the program is to train local CRWs, familiar with local languages and cultures, to provide rehabilitative services that support ageing in place, health, wellbeing, and quality of life for First Nations elders. The study employed a community participatory action research approach aligning with the OCAP® (Ownership, Control, Access, and Possession) framework for working with Indigenous populations. Seventeen community partners were active participants in the program development, evaluation, and adaptation of the CRW curriculum. Feedback was received through advisory committee meetings, surveys, and individual and group interviews. RESULTS: All 101 participants agreed, across all curriculum modules, that (1) the time allotment was realistic; (2) instructional materials, activities, and resources were appropriate and easy to understand; (3) evaluation activities accurately measured learning; and (4) participants identifying as Indigenous felt that Indigenous culture was adequately reflected. The qualitative findings highlighted the importance of incorporating culture, spirituality, traditions, local language use, and reintegration of First Nations elders into traditional activities and community activities for both the CRW curriculum and rehabilitation efforts. The need for locally available First Nations, elder-focused mental health support, transportation options, and gathering spaces such as those commonly seen in urban areas was also highlighted. CONCLUSION: The process of iteratively developing and evaluating a CRW program resulted in a Northwestern Ontario college welcoming the first cohort of students to the CRW program in March 2022. The program is co-facilitated with a First Nations Elder and includes components of local culture, language, and the reintegration of First Nations elders into community as part of the rehabilitation efforts. In addition, to appropriately support the quality of life, health, and wellbeing of First Nations elders, the project team called upon provincial and federal governments to work with First Nations to make available dedicated funding to address inequities in resources available to First Nations elders in Northwestern Ontario urban and First Nations remote communities. This included elder-focused transportation options, mental health services, and gathering places. The program implementation will be evaluated with the first cohort of CRWs for further adaptations considering potential scale and spread. As such, the project and findings may also represent a resource for others wishing to pursue similar development using participatory approaches in rural and remote communities both nationally and internationally.

Health-related quality of life 12 years after injury: prevalence and predictors of outcomes in a cohort of injured Maori.

PURPOSE: Studies have found that many people who sustain an injury can experience adverse outcomes for a considerable time thereafter. Maori, the Indigenous peoples of Aotearoa me Te Waipounamu (New Zealand; NZ), are no exception. The Prospective Outcomes of Injury Study (POIS) found that almost three-quarters of Maori participants were experiencing at least one of a range of poor outcomes at two years post-injury. The aim of this paper was to estimate the prevalence, and identify predictors, of adverse health-related quality of life (HRQoL) outcomes in the POIS-10 Maori cohort, 12 years after participants sustained an injury. METHODS: Interviewers reached 354 individuals who were eligible to participate in a POIS-10 Maori interview, to be conducted a decade after the last phase of POIS interviews (held 24 months post-injury). The outcomes of interest were responses to each of the five EQ-5D-5L dimensions at 12 years post-injury. Potential predictors (i.e., pre-injury sociodemographic and health measures; injury-related factors) were collected from earlier POIS interviews. Additional injury-related information was collected from administrative datasets proximate to the injury event 12 years prior. RESULTS: Predictors of 12-year HRQoL outcomes varied by EQ-5D-5L dimension. The most common predictors across dimensions were pre-injury chronic conditions and pre-injury living arrangements. CONCLUSION: An approach to rehabilitation where health services proactively enquire about, and consider the broader aspects of, patient health and wellbeing throughout the injury recovery process, and effectively coordinate their patients' care with other health and social services where necessary, may help improve long-term HRQoL outcomes for injured Maori.

The Culture is Prevention Project: measuring cultural connectedness and providing evidence that culture is a social determinant of health for Native Americans.

BACKGROUND: It is important for non-Native persons to understand that the meaning of culture to Native American/Indigenous Peoples is not about esteem, taste or music but rather is described as a cognitive map on how to be. Native American/Indigenous culture can be thought of as all the things and ways in which Native/Indigenous people understand who they are, where they come from and how they are to interact with others. Hundreds of years across many generations have taught that culture-based activities and interventions improve Native/Indigenous health and wellbeing. We explore if increased Native American culture/cultural connectedness is associated with better mental health/well-being and physical health. METHODS: We analyzed data from a two-phased study (N = 259 and N = 102) of 361 urban Native Americans in California (2018-2021). The 29 items validated Cultural Connectedness Scale-California (CCS-CA) measured Native culture/cultural connectedness. Mental health/well-being and physical health were assessed using the: modified Herth Hope Index (mHHI), Satisfaction with Life (SWL), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R-10), Substance Abuse (CAGE-AID), and Health Related Quality of Life (HRQOL). We conducted Pearson correlations and stepwise regression analyses with CCS-CA as the independent (predictor) variable to explore our main research questions: 1) Is increased Native American/Indigenous culture associated with: 1) better mental health/well-being; and 2) better physical health? RESULTS: Increased Native/Indigenous culture (CCS-CA scores) is significantly associated with better mental health/well-being (mHHI, p < .001) and satisfaction with life (SWL, p < .001) predicts good physical health days (HRQOL, p < .001). Increased connection to Native American/Indigenous culture (CCS-CA scores) is significantly associated with decreased risk for depression (CESD-R-10, p < .0) and substance abuse and (CAGE-AID, p < .07). Significant results for culture as protective against risk for substance abuse (CAGE-AID) was most likely affected (p value approaching significance) due to an error in language on the measure (i.e., created double negative). CONCLUSIONS: Native American/Indigenous culture is a predictor of improved outcomes for mental health/well-being and physical healthy days. Native culture is an important social determinant of health. We add to the evidence that Native/Indigenous culture (i.e., cultural connectedness) be considered an important intervention objective and health-related outcome measure.

Describing the health-related quality of life of Maori adults in Aotearoa me Te Waipounamu (New Zealand).

PURPOSE: In Aotearoa me Te Waipounamu (New Zealand; NZ) there are considerable inequities in health status and outcomes for Maori, the Indigenous peoples of NZ. It is therefore important that the health status and preferences of Maori are specifically considered in healthcare policy and decision making. This paper describes the health-related quality of life of 390 Maori adults who took part in the NZ EQ-5D-5L valuation study. METHODS: Responses on the five dimensions of the EQ-5D-5L were dichotomised into "no problems" and "any problems", summarised and disaggregated by age group. Mean preference weights were reported by age group and overall. Mean utility values (calculated by applying each participant's preference weights to their EQ-5D-5L profile) were summed and respective means and standard deviations reported by age, chronic disease status and disability. RESULTS: The EQ-5D-5L dimensions with the highest proportion of participants reporting any problems were pain/discomfort (61.5%) and anxiety/depression (50%). The most commonly-reported chronic disease was mental illness/distress (24.6%). Anxiety/depression ranked as the most important dimension, with usual activities, the least important. The mean utility value was 0.83 with the lowest value (0.79) found in the 18-24 and 45-54 age groups. For participants with at least one chronic disease the mean utility value was 0.76 compared to 0.91 for those with none. CONCLUSION: To reduce inequities experienced by Maori it is crucial that the health status of Maori and the values Maori place on health-related quality of life are properly understood. This can only be achieved using Maori-specific data.

Health-related quality of life measures used with Indigenous children/youth in the Pacific Rim: a scoping review.

OBJECTIVE: To identify and describe (1) which health-related quality of life (HRQoL) measures have been used with Indigenous children/youth (aged 8-17 years) within the Pacific Rim; and (2) studies that refer to Indigenous health concepts in the use of child/youth HRQoL measures. DESIGN: A scoping review. DATA SOURCES: Ovid (Medline), PubMed, Scopus, Web of Science and CINAHL were searched up until 25 June 2020. ELIGIBILITY CRITERIA: Eligible papers were identified by two independent reviewers. Eligible papers were written in English, published between January 1990 and June 2020 and included an HRQoL measure used in research with Indigenous child/youth populations (aged between 8 and 17 years) in the Pacific Rim region. DATA EXTRACTION AND SYNTHESIS: Data extracted included study characteristics (year, country, Indigenous population, Indigenous sample size, age group), HRQoL measure characteristics (generic or condition-specific measure, child or adult measure, who completed the measure(s), dimensions, items and response scale of measure) and consideration of Indigenous concepts (created for Indigenous population, modified for Indigenous population, validated for Indigenous population, reliability in Indigenous populations, Indigenous involvement, reference to Indigenous theories/models/frameworks). RESULTS: After removing duplicates, 1393 paper titles and abstracts were screened, and 543 had full-text review for eligibility. Of these, 40 full-text papers were eligible, reporting on 32 unique studies. Twenty-nine HRQoL measures were used across eight countries. Thirty-three papers did not acknowledge Indigenous concepts of health, and only two measures were specifically created for use with Indigenous populations. CONCLUSIONS: There is a paucity of research investigating HRQoL measures used with Indigenous children/youth and a lack of involvement of Indigenous peoples in the development and use of HRQoL measures. We strongly recommend explicit consideration of Indigenous concepts when developing, validating, assessing and using HRQoL measures with Indigenous populations.

Prevalence of musculoskeletal complaints and health-related quality of life in a Maroon and Kalinya Indigenous rural village in Suriname.

PURPOSE: Musculoskeletal complaints (MSCs), a leading contributor to disability worldwide, have a major impact on health-related quality of life (HRQoL). Poor general health related to lifestyle factors such as smoking, alcohol consumption and physical inactivity can lead to a higher risk to suffer MSCs. For minority groups in Suriname such as the Maroons and the Indigenous peoples no research has been conducted regarding prevalence of MSCs, HRQoL and various lifestyle factors. The aims were to determine the prevalence of MSCs and HRQoL in two rural tribal villages in the forested interior of Suriname and to identify various lifestyle factors associated with HRQoL in these communities. METHOD: This was a cross-sectional community-based study using the Community Oriented Program for the Control of Rheumatic Diseases stage 1, phase 1 & 2 methodology in Goejaba, a Maroon village and Galibi, an Indigenous rural village. Sociodemographic data, self-reported comorbidities, past MSCs (for longer than seven days), lifestyle factors including smoking, alcohol use, body mass index (BMI) and physical activity (PA), and HRQoL (using the 36-item Short Form Survey (SF-36)) data were gathered among 153 Indigenous individuals in Galibi, and 516 Maroons in Goejaba. Regression models were constructed to explore associations between presence of MSCs, lifestyle factors and HRQoL. RESULTS: High prevalence rates for past MSCs were reported in Galibi (72.4%) and Goejaba (58.3%). In both communities, respondents with MSCs reported significantly worse HRQoL than persons without MSCs. MSCs and the presence of comorbidities had a strong negative association with HRQoL, whereas PA positively influenced the physical and mental health domains of the SF-36. Smoking, alcohol use and BMI showed no association with HRQoL. CONCLUSIONS: In this first study, a high prevalence for MSCs was reported in an Indigenous and Maroon rural community in Suriname. MSCs and comorbidities had a significant negative impact on HRQoL. PA was associated with higher self-reported HRQoL.