Managing Matajoosh: determinants of first Nations' cancer care decisions.

BACKGROUND: Accessing cancer treatment requires First Nation peoples living in rural and remote communities to either commute to care, or to relocate to an urban centre for the length or part of the treatment. While Canadians living in rural and remote communities must often make difficult decisions following a cancer diagnosis, such decisions are further complicated by the unique policy and socio-historical contexts affecting many First Nation peoples in Canada. These contexts often intersect with negative healthcare experiences which can be related to jurisdictional confusion encountered when seeking care. Given the rising incidence of cancer within First Nation populations, there is a growing potential for negative health outcomes. METHODS: The analysis presented in this paper focuses on the experience of First Nation peoples' access to cancer care in the province of Manitoba. We analyzed policy documents and government websites; interviewed individuals who have experienced relocation (N = 5), family members (N = 8), healthcare providers and administrators (N = 15). RESULTS: Although the healthcare providers (social workers, physicians, nurses, patient navigators, and administrators) we interviewed wanted to assist patients and their families, the focus of care remained informed by patients' clinical reality, without recognition of the context which impacts and constrains access to cancer care services. Contrasting and converging narratives identify barriers to early diagnosis, poor coordination of care across jurisdictions and logistic complexities that result in fatigue and undermine adherence. Providers and decision-makers who were aware of this broader context were not empowered to address system's limitations. CONCLUSIONS: We argue that a whole system's approach is required in order to address these limitations.

Making "ethical safe space" in the translation of contested knowledge: the role of community debate in defining end-of-life decision ethics.

OBJECTIVE: The objectives of this article are, first, to document a unique process of research knowledge translation (KT), which the authors describe as the creation of "ethical safe space," and, second, to document the narratives of forum participants and describe their interaction in a dialogue about vulnerability, the authority of physicians, and the perspective of people with disabilities on the policy. METHOD: Narrative data from qualitative interviews with individual key informants and focus groups were used to identify speakers with specific expertise on policy, disability perspectives, and bioethical issues, who were invited to participate in the Forum on Ethical Safe Space. The planning workgroup adopted a model for enabling representative participation in the public forum designed to reduce the impact of physical, sensory, financial, language, and professional status barriers. Using the transcripts and keynote speakers' printed texts, primary themes and patterns of interaction were identified reflecting the alternative perspectives. Through the development of a workshop on ethical, legal, and disability-related implications of professional policy guidelines developed by the College of Physicians and Surgeons of Manitoba, we provided a qualitative analysis of the discourse involving experts and disability community members supporting alternative positions on the impact of the policy statement, and discuss ethical, legal, and disability rights issues identified in the public debate. RESULTS: Contested policy and ethical frameworks for making decisions about withdrawing and withholding life supporting treatment may influence both the perspectives of palliative care providers and patients referred to palliative care facilities. An innovative model for KT using a public forum that enabled stakeholders with conflicting perspectives to engage with ethical and professional policy issues asserting the physician's authority in contested decisions involving withdrawing or withholding life-supporting treatment, was a successful way to engage stakeholders supporting alternative positions on the impact of the policy statement and to discuss ethical, legal, and disability rights issues identified in the public debate. SIGNIFICANCE OF RESULTS: Discussion during the forum revealed several benefits of creating ethical safe space. This model of workshop allows space for participation of stakeholders, who might not otherwise be able to interact in the same forum, to articulate their perspectives and debate with other presenters and audience members. Participants at the forum spoke of the creation of ethical safe space as a starting point for more dialogue on the issues raised by the policy statement. The forum was, therefore, seen as a potential starting point for building conversation that would facilitate revising the policy with broader consultation on its legal and ethical validity.

Pathways to translating experiential knowledge into mental health policy.

OBJECTIVE: This research explored the pathways through which the experiential knowledge of people who need and use mental health and social housing services (citizen-users) gains access to policymaking. METHODS: Qualitative instrumental case study methodology focused the study on the policy field of mental health and social housing in Manitoba, Canada. Data collection included interviews with 21 key informants from four policy actor groups: citizen-users, service providers, advocacy organization representatives, and government officials. Relevant policy-related documents were also reviewed. Data were analyzed using inductive qualitative methods. RESULTS: Key informants described diverse pathways through which the experiential knowledge of citizen-users has been communicated to policy decision makers. Pathways have involved direct discourse between citizen-users and decision makers. Alternatively, indirect pathways were ones in which experiential knowledge was translated by other policy actors. Informants identified factors that could influence the integrity of the indirect pathways: the length and complexity of the pathways, the motivations and interests of the translators, and strategies to enhance the pathways. The pathways could be strengthened by developing the culture, leadership, knowledge, skills and attitudes supportive of engaging citizen-users and by accurately translating their experiential knowledge. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: If citizen-users are to be included in policymaking in a recovery-oriented mental health system, action must be taken to enhance the pathways through which their experiential knowledge reaches policymaking processes. Service providers, advocacy organization representatives and government officials can all take action to promote social policymaking that is informed by citizen-users' ideas and experiences.

End-of-life ethics and disability: differing perspectives on case-based teaching.

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals.

Is Assisted Peritoneal Dialysis a Solution for Northern Manitoba?

Background: End-stage kidney disease (ESKD) continues to fundamentally impact the lives of First Nations (FN) patients. Home peritoneal dialysis (PD) offers patients more mobility and flexibility, but few Manitoba FNs have availed themselves of this option. Objective: This paper discusses Manitoba FNs' experience of PD, to highlight enablers and barriers to expanding the use of PD in rural and remote Manitoba communities. Methods: We analyzed interviews of individuals living with ESKD (N = 14), family caregivers (N = 14) and healthcare providers and administrators (N = 27). Results: Barriers to PD uptake include medical suitability, patients' distrust of home modalities and fear in their ability to manage. Other factors include limited family support and lack of appropriate housing. Conclusions: Assisted peritoneal dialysis (APD) is an emerging model where PD supplies are centrally located, and where a cohort of PD patients can provide mutual support with added assistance from an APD worker. This model could mitigate existing treatment barriers.

Programmatic and ethical challenges in the implementation of treatment-as-prevention in the context of HIV and drug-resistant tuberculosis co-infection in sub-Saharan Africa.

There is limited literature on programmatic challenges in the implementation of a treatment-as-prevention (TasP) strategy among human immunodeficiency virus (HIV) and drug-resistant tuberculosis (DR-TB) co-infected individuals in sub-Saharan Africa (SSA). This paper highlights specific programmatic challenges surrounding the implementation of this strategy among HIV and DR-TB co-infected populations in SSA. In SSA, limitations in administrative, human and financial resources and poor health infrastructure, as well as increased duration and complexity of providing long-term treatment for HIV individuals co-infected with DR-TB, pose substantial challenges to the implementation of a TasP strategy and warrant further investigation. A comprehensive approach must be devised to implement TasP strategy, with special attention paid to the sizable HIV and DR-TB co-infected populations. We suggest that evidence-informed and human rights-based guidelines for participant protection and strategies for programme delivery must be developed and tailored to maximise the benefits to those most at risk of developing HIV and DR-TB co-infection. Assessing regional circumstances is crucial, and TasP programmes in the region should be complemented by combined prevention strategies to achieve the intended goals.

Understanding how context shapes citizen-user involvement in policy making.

As governments grapple with meeting expectations of citizens and including their voices in policy making, greater understanding of how context influences involvement can help identify ways to involve those citizens who face substantial barriers to inclusion in policy development. This qualitative, instrumental case study focused on the involvement of people who use and need mental health and housing services in policy development in Manitoba. Data were collected from 21 key informants purposively selected from four policy actor groups as well as from relevant documents. Data were analyzed using inductive qualitative methods. Results identified five themes related to contextual influences on involvement: (a) the social environment, (b) institutional characteristics, (c) participant characteristics, (d) opportunities for involvement and (e) ideas and formal policy structures. The findings suggest that policy makers should look to contextual factors to identify ways to reduce the barriers to the inclusion of people with mental health and housing needs in health policy making.

Research Ethics Review and Aboriginal Community Values: Can the Two be Reconciled?

CONTEMPORARY RESEARCH ETHICS REVIEW COMMITTEES (RECs) are heavily influenced by the established academic or health care institutional frameworks in which they operate, sharing a cultural, methodological and ethical perspective on the conduct of research involving humans. The principle of autonomous choice carries great weight in what is a highly individualistic decision-making process in medical practice and research. This assumes that the best protection lies in the ability of patients or research participants to make competent, voluntary, informed choices, evaluating the risks and benefits from a personal perspective. Over the past two decades, North American and international indigenous researchers, policy makers and communities have identified key issues of relevance to them, but ignored by most institutional or university-based RECs. They critique the current research review structure, and propose changes on a variety of levels in an attempt to develop more community sensitive research ethics review processes. In doing so, they have emphasized recognition of collective rights including community consent. Critics see alternative policy guidelines and community-based review bodies as challenging the current system of ethics review. Some view them as reflecting a fundamental difference in values. In this paper, we explore these developments in the context of the political, legal and ethical frameworks that have informed REC review. We examine the process and content of these frameworks and ask how this contrasts with emerging Aboriginal proposals for community-based research ethics review. We follow this with recommendations on how current REC review models might accommodate the requirements of both communities and RECs.

Disability and quality of life in Canadian aboriginal and non-aboriginal diabetic lower-extremity amputees.

OBJECTIVE: To compare and contrast disability and quality of life (QOL) in Aboriginal and non-Aboriginal subjects with diabetes who had lower-extremity amputation (LEA) and were living in urban and rural communities in Canada. DESIGN: Descriptive study using an interviewer-administered questionnaire and hospital medical record review. SETTING: Tertiary care center. PARTICIPANTS: Forty-four diabetic subjects (minimum age, 18 y) not receiving dialysis, including 21 Aboriginal (8 urban, 13 rural) and 23 non-Aboriginal (16 urban, 7 rural) subjects. Subjects were living in their current residence and had undergone LEA above the level of the ankle 6 months or more before interview. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Qualitative and quantitative data about symptoms, impairment, and QOL. RESULTS: Aboriginal subjects were younger than non-Aboriginal subjects at the time of diabetes diagnosis (Aboriginal, 42+/-10 y; non-Aboriginal, 52+/-14 y; P<.005) and first major LEA (Aboriginal, 57+/-7 y; non-Aboriginal, 64+/-11 y; P<.015). All subjects received rehabilitation after amputation. More rural non-Aboriginal subjects (83%) used their prosthesis both in and outside the home for all movements than other subjects (P<.048). Rural non-Aboriginal subjects had the lowest and urban non-Aboriginal subjects had the highest frequency of walking-aid use outside the home. Assistance with personal care was required by a minority of subjects, but assistance with daily housework was required by the majority of subjects. Qualitative analysis revealed that participants were, in most cases, comfortable with their postamputation life. CONCLUSIONS: Although the majority of participants in this study generally felt satisfied with their current status, major functional changes were noted after LEA that had a large negative impact on QOL.

Disability or end-of-life? Competing narratives in bioethics.

Bioethics, and indeed much ethical writing generally, makes its point through narratives. The religious parable no less than the medical teaching case uses a simple story to describe appropriate action or the application of a critical principle. While powerful, the telling story has limits. In this paper the authors describe a simple teaching case on "end-of-life" decision making that was ill received by its audience. The authors ill-received example, involving the disconnection of ventilation in a patient with ALS (Lou Gherig's Disease) was critiqued by audience members with long-term experience as ventilation users. In this case, the supposedly simple narrative of the presenters conflicted with the life histories of the audience. The lessons of this story, and the conflict that resulted, speak critically to the limits of simple teaching cases as well as the strengths of narrative analysis as a tool for the exploration of bioethical case histories.