Genetic Counseling for Early-onset Familial Alzheimer Disease in Large Aboriginal Kindred from a Remote Community in British Columbia: Unique Challenges and Possible Solutions

A novel, pathogenic presenilin 1 (PS1) mutation has recently been identified in a large Aboriginal kindred living in dispersed communities throughout British Columbia, Canada. Disseminating genetic information and ensuring that appropriate genetic counseling services are provided to all concerned relatives have posed several unique challenges. These challenges include knowledge exchange and continuity of care in a geographically remote and culturally distinct community. To our knowledge, this is the first time a specific genetic counseling approach has been needed for early-onset familial Alzheimer disease (EOFAD) in a North American Aboriginal community.     

Aboriginal perceptions of social and emotional wellbeing programs: A systematic review of literature assessing social and emotional wellbeing programs for Aboriginal and Torres Strait Islander Australians perspectives

Australian Aboriginal and Torres Strait Islander communities have been targets of social and emotional wellbeing programs for many years. However, the few health-care programs and services that are evaluated rarely provide insight into the participants' perspectives of program success or failure. This systematic review assessed 33 social and emotional wellbeing programs across Australia to better understand what Aboriginal community members think about the programs and how they could be improved. Results highlighted the interesting and valuable insights provided by Aboriginal participants, including what kinds of program activities and approaches are most suitable, what program characteristics are successful or desired, and their experiences of wellbeing change before and after program participation. They likewise voiced opinions about poorly received programs, culturally inappropriate services and negative experiences. This review highlighted how health and wellbeing programs must better engage Aboriginal and Torres Strait Islander clients to ensure that services are culturally safe, holistic, integrate appropriate staffing, include culturally relevant activities and value patient/participant experiences. These findings have significant implications for the health and wellbeing sector; specifically, research, policy, program design and implementation, evaluation methods, and self-determination.     

Whole of community suicide prevention forums for Aboriginal Australians

It is well known that Aboriginal Australians are at increased risk of suicide. Contributors to suicide differ for Indigenous and non-Indigenous populations (Westerman, 2003; 2019). This study evaluated whole of community suicide prevention forums conducted across six locations. Attendees were youth (N = 136), service providers (N = 225), and community members (N = 158). The content of the forums was empirically based and, for service providers and community members, covered knowledge of suicide, and depression specific to Aboriginal people, skills relating to working with depressed and suicidal Aboriginal people, and intentions to help an Aboriginal person who is suicidal. Content for youth attendees focused on knowledge of suicide and depression, coping skills, intentions to help a friend, and beliefs about suicide. While the results demonstrated significant gains across most domains, there was a potentiating effect with some skills increases becoming more significant over each phase. This demonstrates that a whole of community approach to Indigenous suicide prevention is required, and that clinical and cultural skills require a longer-term approach for impact and sustainability.     

HCV knowledge among a sample of HCV positive Aboriginal Australians residing in New South Wales

Australian Aboriginal and Torres Strait Islanders are overrepresented in both the prevalence and incidence of the hepatitis C (HCV). HCV knowledge has been associated with a range of positive health behaviours. HCV knowledge has previously been investigated as a single construct; however examining different knowledge domains (i.e. transmission, risk of complications, testing and treatment) separately may be beneficial. This study investigated whether having greater HCV knowledge in different domains is associated with self-reported positive health behaviours. 203 Aboriginal people living with HCV completed a survey assessing HCV knowledge, testing and care, lifestyle changes since diagnosis and treatment intent. Respondents’ knowledge was relatively high. Greater knowledge of risk of health complications was associated with undertaking more positive lifestyle changes since diagnosis. Respondents testing and treatment knowledge was significantly associated with incarceration, lifestyle changes since diagnosis and future treatment intentions. This study illustrates the importance of ensuring that knowledge is high across different HCV domains to optimise a range of positive health behaviours of Aboriginal people living with HCV. Future health promotion campaigns targeted at Aboriginal people living with HCV could benefit from broadening their focus from prevention to other domains such as testing and treatment.     

Aboriginal language knowledge and youth suicide

This brief report details a preliminary investigation into how community-level variability in knowledge of Aboriginal languages relate to “band”-level measures of youth suicide. In Canada, and, more specifically, in the province of British Columbia (BC), Aboriginal youth suicide rates vary substantially from one community to another. The results reported demonstrate that not only did this simple language-use indicator prove to have predictive power over and above that of six other cultural continuity factors identified in previous research, but also that youth suicide rates effectively dropped to zero in those few communities in which at least half the band members reported a conversational knowledge of their own “Native” language.     

“Sport is community:” An exploration of urban Aboriginal peoples' meanings of community within the context of sport

ObjectivesThe purpose of this study was to better understand the meanings of community, particularly as it is understood within the context of sport, for urban Aboriginal youth and adults in Edmonton, Alberta.DesignA community-based participatory research (CBPR) approach was used to guide this research.MethodOne-on-one interviews were conducted with 18 Aboriginal youth and adults. Data was analyzed using Elo and Kyngäs' (2008) process of content analysis. The integrated indigenous-ecological model was used as a framework for data analysis and the interpretation of findings.ResultsFindings are represented by five themes that are supported by direct quotes from participants. Participants described community as: (1) belonging, (2) family and friends, (3) supportive interactions, (4) sport, and (5) where you live and come from.ConclusionsFindings from this research suggest that urban Aboriginal youth identify with a number of different communities, and their complex meanings of communities are comprised of various interpersonal level factors. The knowledge shared by participants provides necessary insights into meanings of community, which are necessary for ensuring that community-driven and community-based sport programs are relevant to Aboriginal youth.     

Picturing the Wheatbelt: Exploring and Expressing Place Identity Through Photography

Community arts and cultural development is a process that builds on and responds to the aspirations and needs of communities through creative means. It is participatory and inclusive, and uses multiple modes of representation to produce local knowledge. ‘Voices’ used photography and photo elicitation as the medium for exploring and expressing sense of place among Aboriginal and non‐Indigenous children, young people and adults in four rural towns. An analysis of data generated by the project shows the diverse images that people chose to capture and the different meanings they afforded to their pictures. These meanings reflected individual and collective constructions of place, based on positive experiences and emotions tied to the natural environment and features of the built environment. We discuss community arts and cultural development practice with reference to creative visual methodologies and suggest that it is an approach that can contribute to community psychology’s empowerment agenda.     

“When you're coming from the reserve you're not supposed to make it”: Stories of Aboriginal athletes pursuing sport and academic careers in “mainstream” cultural contexts

ObjectivesThis project responds to the call for athletic career development and transitions research that centralizes the constitutive role of culture in athletes' experiences (Stambulova & Alfermann, 2009; Stambulova & Ryba, 2014). Within, we explore the cultural transitions of Aboriginal hockey players (14–22 years old) relocated into “mainstream” (Euro-Canadian) cultural contexts to pursue dual careers as students and athletes.DesignThe research was framed as a cultural sport psychology initiative. The project was rooted in a local Indigenous decolonizing methodology, which was brought forward via a participatory action research approach.MethodsMandala drawings and conversational interviews were employed as open-ended data collection processes that enabled the participants to share their stories and meanings through their own cultural perspectives. Vignettes were then used to present their accounts.ResultsThe participants' careers as athletes and students were precariously navigated within larger cultural tensions to: (a) deal with a loss of belonging in the Aboriginal community; (b) break down negative stereotypes and attitudes that Aboriginal people are not able to “make it”; and (c) give back to the Aboriginal communities they relocated away from.ConclusionsThrough a culturally resonant mode of knowledge production, the research uncovers contextual understandings of the cultural transitions experienced by Aboriginal athletes, revealing how this transition intersects with and shapes their dual careers. The project offers insight into the central role of culture in shaping athletes' dual careers, and provides impetus for more idiosyncratic approaches to be adopted in future research.     

Building value-based partnerships: toward solidarity with oppressed groups

We propose a value-based conceptualization of partnership, defining partnership as relationships between community psychologists, oppressed groups, and other stakeholders, which strive to achieve key community psychology values (caring, compassion, community, health, self-determination, participation, power-sharing, human diversity, and social justice). These values guide partnership work related to the development of services or supports, coalitions and social action, and community research and program evaluation. We prescribe guidelines for building such partnerships and conclude by considering some of the challenges in implementing value-based partnerships.     

Cultural Missteps and Ethical Considerations with Indigenous Populations: Preliminary Reflections from Northeastern Ontario,Canada

Within this submission the authors share their experiences as a blended research team with Aboriginal community and mainstream academic researchers. The team has collaborated since 2004 on several externally funded research projects. Initially, the team engaged in research through mainstream methodologies. In the process, the community co-researchers and participants were silenced through mainstream cultural practices that were unfamiliar and meaningless in Wikwemikong culture. More recently, the team has employed a community conceived de-colonizing methodology, developed from within Wikwemikong Unceded Indian Reserve. Within this submission, the authors will highlight their initial cultural missteps, followed by more recently utilized culturally relevant approaches. It is proposed that what might be ethically sound research with mainstream participants and among mainstream researchers can silence and subvert practices among those from marginalized groups/cultures. Provisional suggestions are offered for researchers interested in co-researching in Aboriginal communities.     

Navigating the insider-outsider hyphen: A qualitative exploration of the acculturation challenges of Aboriginal athletes pursuing sport in Euro-Canadian contexts

ObjectivesThe purpose of this project was to explore the acculturation challenges of Aboriginal athletes (14–26 years) from Canada as they moved off reserves to pursue sport within non-Aboriginal (Euro-Canadian) communities. The project was also aimed at contributing to the acculturation literature in sport psychology through an Indigenous decolonizing methodology.DesignUniversity academics partnered with Aboriginal community researchers from one reserve to facilitate an Indigenous decolonizing methodology rooted in practices from the local culture. The project was articulated as a form of cultural sport psychology.MethodsMandala drawings were used to facilitate conversational interviews with 21 Aboriginal athletes about their experiences relocating off reserves and the acculturation challenges they faced as they attempted to pursue sport within Euro-Canadian contexts. A local Indigenous version of an inductive thematic analysis was then conducted.ResultsThe acculturation challenges of Aboriginal athletes coalesced into two major themes: (a) culture shock (which occurred in relation to the host culture), and (b) becoming disconnected from home (which occurred in relation to the home culture). These themes illustrated how the athletes’ sense of identity and place were challenged and changed, as they (re)negotiated meaningful positions for themselves in and between two cultural realities.ConclusionThis project centralized a culturally resonant mode of knowledge production embracing local Aboriginal ways of knowing. This approach facilitated deeper insights into athletes’ acculturation challenges, which contextualized the complexity and fluidity of the acculturation process.     

Life is Good

Abstract

The author inquires into the relation between the production of genetic knowledge on the one hand, and human autonomy and self-determination on the other. He does so by specifying the notions of “genetic test” and “human autonomy”; by discussing the epistemic status of genetic knowledge, given its importance for the clarification of its anthropological and ethical implications; and by inquiring into some ethical implications by investigating the conditions under which genetic knowledge of the individual may justifiably be established. This discussion shows that the autonomy-based right to self-determination as far as gene information is concerned, is fundamental. This has major implications, which the author identifies with regard to the difficult problem of the moral legitimacy of the use of genetic knowledge in the context of insurance policies.     

Self-determination Versus the Determination of Self: A Critical Reading of the Colonial Ethics Inherent to the United Nations Declaration on the Rights of Indigenous Peoples

The United Nations' (UN) adoption of a Declaration on the Rights of Indigenous Peoples is intended to mark a fundamental ethical turn in the relationships between indigenous peoples and the community of sovereign states. This moment is the result of decades of discussion and negotiation, largely revolving around states' discomfort with notion of indigenous self-determination. Member states of the UN have feared that an ethic of indigenous self-determination would undermine the principles of state sovereignty on which the UN is itself grounded. However, such fears are the result of very poor understandings of the ethical principles under which the relations between indigenous peoples and nation-states already have been formed under centuries of European colonialism. The principle of self-determination embraced in this Declaration does not diverge from colonial norms; it entrenches these norms as international policy. Without doubt, indigenous peoples are more likely to benefit than suffer from states' observance of the Articles within this Declaration. Reducing the challenge of indigenous peoples' rights to the notion of self-determination set out in this document, though, misses an extraordinarily important opportunity to critically investigate the ethic of rights that has produced an opposition between nation-states and indigenous peoples to begin with. A true turn in the ethics of this relationship would see not simply the institution of a right to self-determination but, rather, indigenous peoples' right to first determine the nature of self for themselves.     

The Red Road to Wellness: Cultural Reclamation in a Native First Nations Community Treatment Center

This article explores how Native American cultural practices were incorporated into the therapeutic activities of a community-controlled substance abuse treatment center on a "First Nations" reserve in the Canadian north. Analysis of open-ended interviews with nineteen staff and clients-as contextualized by participant observation, program records, and existing ethnographic resources-yielded insights concerning local therapeutic practice with outpatients and other community members. Specifically, program staff adopted and promoted a diverse array of both western and Aboriginal approaches that were formally integrated with reference to the Aboriginal symbol of the medicine wheel. Although incorporations of indigenous culture marked Lodge programs as distinctively Aboriginal in character, the subtle but profound influence of western "therapy culture" was centrally evident in healing activities as well. Nuanced explication of these activities illustrated four contributions of cultural analysis for community psychology.     

Training Aboriginal Practitioners in Cognitive Behavioural Therapy

Comments on an article by Bennett‐Levy and colleagues. This commentary reviews a dissemination of cognitive behavioral therapy (CBT) for Aboriginal Australians, with regard to the strengths of the dissemination effort and areas for future efforts. As an initial step in bringing CBT to a population that has been severely limited in access to evidence based practice, despite a notable need, this study was an important step forward. Feedback from the participatory action research group (n = 5 Aboriginal Australian counsellors) identified CBT elements and adaptations perceived to be particularly effective with Aboriginal Australian clients. Case conceptualization was identified as a potential avenue for further tailoring CBT to the individual needs of clients. Several factor including the success of the dissemination effort, reports that clients shared CBT techniques with their communities, and the skill‐building nature of CBT raised the possibility of future community‐based dissemination.     

Closing the Gap in Aboriginal and Torres Strait Islander Youth Suicide: A Social–Emotional Wellbeing Service Innovation Project

Objective

The suicide rate for Queensland's Aboriginal and Torres Strait Islander young people is over four times that of their non‐Indigenous counterparts, with Aboriginal and Torres Strait Islander children (under 15) dying by suicide at 12 times the non‐Indigenous rate. There is a need for interventions that are culturally validated and community‐endorsed. The aim of this article is to describe the design and implementation of a group‐based intervention, as well to report the results of the various qualitative and quantitative measures.

Method

Sixty‐one Aboriginal and Torres Strait Islander persons aged 11–21 years completed a social–emotional wellbeing (SEWB) program at headspace Inala. Data were available through to 2‐month follow‐up for 49 participants. The program was designed and delivered in collaboration with the local Aboriginal and Torres Strait Islander community.

Results

There was a statistically significant decrease in suicidal ideation experienced by the participants after completing the program. Qualitative measures indicated that participants experienced improved understanding of holistic health and an increased number of coping skills.

Conclusions

Not only was this the first evaluated intervention in Aboriginal and Torres Strait Islander youth to ever report a decrease in individual suicidality, the program was carefully designed and implemented in consultation with community in a culturally sensitive manner and thus provides an invaluable framework for future SEWB work.     

美国残障人士自我决定研究及对我国的启示

自我决定能力被认为是残障学生课程和学习指导的核心组成要素之一,培养自我决定能力的发展是促进残障学生在毕业后获得更好发展的一种教学策略。相关研究美国已成体系而国内始露头角。本研究阅读美国残障人士自我决定相关文献并进行以下五个方面的分析:自我决定概念起源与发展、相关政策法规、理论模型、教学模型、教育教学实践。根据文献分析美国自我决定研究的发展趋势,并思考在我国促进残障人士自我决定能力发展的可能性与必要性,且提出四点建议。     

Using a Person-Centered Approach in Community-Based Instruction for Adults with Developmental Disabilities

Instruction is a variable that has enhanced community access for adults with developmental disabilities. Community-based instruction emerged as an especially useful format to teach individuals daily living and work skills in the settings where skills would be used. As advocacy and self-advocacy for individuals with developmental disabilities increased, professionals recognized the importance of empowerment and self-determination in gaining community access. Adult education that incorporates the values of person-centered planning will evolve beyond what has traditionally been viewed as community-based instruction. This article describes the characteristics of community-based instruction designed to enhance not only community access, but also the participant's overall quality of life.     

Self-Determination in Intervention With Battered Arab Women in Community Health Clinics in Israel

Many abused women from patriarchal collectivistic societies that are subjected to social control seek help in community health clinics. The article is based on a qualitative study, which consisted of 24 interviews with 12 abused Israeli Arab women who sought the help of social workers in community health clinics. A central theme that emerged from the interviews was the women’s wish to maintain their self-determination in retaining the power to determine the boundaries of the intervention within the professional relationship. The discussion focuses on the dialectical consequences of maintaining the women’s self-determination—empowering them, on one hand, and limiting them, on the other.     

Aboriginal Health Care and Bioethics: A Reflection on the Teaching of the Seven Grandfathers

Contemporary bioethics recognizes the importance of the culture in shaping ethical issues, yet in practice, a process for ethical analysis and decision making is rarely adjusted to the culture and ethnicity of involved parties. This is of a particular concern in a health care system that is caring for a growing Aboriginal population. We raise the possibility of constructing a bioethics grounded in traditional Aboriginal knowledge. As an example of an element of traditional knowledge that contains strong ethical guidance, we present the story of the Gifts of the Seven Grandfathers. We note a resemblance of this Ojibway teaching to virtue ethics in European traditions, but we suggest that there are also important differences in how these two traditions are currently presented. We hope that further engagement with a variety of indigenous moral teachings and traditions could improve health care involving Aboriginal patients and communities, and enrich the discipline of bioethics.