Joseph M. Kaufert

Role conflict among 'culture brokers': the experience of native Canadian medical interpreters.

This paper examines the role conflicts among Cree and Saulteau language-speaking interpreters working in two urban hospitals providing tertiary medical care services to Native Canadians from remote northern communities. Over an 18 month period, participant-observation and analysis of videotaped clinical consultations were utilized to develop an inventory of roles and situational contexts characterizing the work of Native interpreters in urban hospitals. Sources of role conflict were found to be associated with cross-pressures in their roles as language interpreters, culture-brokers and patient advocates.

Biomedical Rituals and Informed Consent: Native Canadians and the Negotiation of Clinical Trust

The signing of a consent agreement prior to surgery, invasive diagnostic or treatment procedures is a pivotal event in the negotiation of trust in the doctor-patient relationship. Most analysts have focused on the legal, ethical or procedural aspects of consent. However there is growing recognition of the need to consider political and cultural factors which lie outside the immediate context of the medical encounter and beyond the control of either physician or patient. This paper will examine the processes through which consent is negotiated when the patient is a Native from one of the remote areas of northern Canada.

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.

Cultural mediation in cancer diagnosis and end of life decision‐making: The experience of Aboriginal patients in Canada

Abstract This paper examines the process of cultural mediation in end of life care of Aboriginal people in urban hospitals. It summarises interview and observational data on the experience of ten Canadians from First Nations communities who were receiving palliative care for renal cancers and other forms of end stage renal disease. Parallel interviews were conducted with members in their families, their health care providers and Aboriginal health interpreters. Older informants and family members asserted cultural values prohibiting direct communication involving terminal prognosis or palliative care options. Their perspective appeared to reflect traditional prohibitions against ‘telling bad news’ related to beliefs that references to mortality had the capacity to create reality. Younger patients favoured more explicit communication about terminal prognosis and wanted to know what palliative care options were available. Interviews were conducted with eight interpreters involved in palliative care work. Int...

Comparing the Origins and Ideologies of the Independent Living Movement and Community Based Rehabilitation.

Community-based rehabilitation (CBR) and independent living (IL) differentiate their orientations from traditional rehabilitation models and both place significant emphasis on consumer and community participation. Although the formative structural forces and historical roots of the two rehabilitation approaches are very different, comparison of them is necessary for the following reasons. First, the disabled consumers movement is increasingly involved in international work and has fostered the development of organizations in Southern countries which apply an independent living and consumer-based perspective. It is therefore useful to develop a clear understanding of the cultural and historical background of this movement and its rootedness in the North American experience. Secondly, there has been some discussion of introducing the CBR model into North America. While an attractive concept, it is critical to understand that CBR was developed for a very different context. Most importantly, it grew up in the absence of a fully articulated consumer movement or a fully professionalized and elaborated system of rehabilitation. Expansion of both CBR and IL reflects the emerging dialogue and exchange which is transforming both movements.

Health beliefs as predictors of success of alternate modalities of smoking cessation: results of a controlled trial.

The primary objective of this study was to determine whether health beliefs influenced the outcome of the three alternate modalities of reducing cigarette consumption. The study randomized volunteers either to a control group or to one of three cessation programs, using behavior modification, health education, or hypnosis. A questionnaire was used to document health beliefs, demographic characteristics, and smoking history. Blood samples were taken before and after the completion of intervention programs to measure changes in serum thiocyanate. A follow-up questionnaire was used to assess smoking behavior after 6 months. Statistically significant decreases in serum thiocyanate levels followed participation in each of the three programs. Factor analysis and reliability tests were used to identify four scales reflecting major variable dimensions in the health belief model. Significant correlations between change in serum thiocyanate and two of the scales (general health concern and perceived vulnerability) were found only for the group randomly assigned to the health education intervention program.

Conjoint Research Interviews With Frail, Elderly Couples: Methodological Implications

In this phenomenological study, frail, rural elderly couples were interviewed as dyads. Couples participated in semistructured interviews and jointly constructed their responses. The elderly couple or dyad was the unit of inquiry, data collection, and analysis. The study sought to maximize the understanding of the couple as a unit as partners negotiated and constructed their responses. The method of data collection provided opportunity to observe the verbal and nonverbal interaction of the couple, the process used to construct the conjoint dialogue, and the content of the discourse. The couple conversation was richer in content and more effective in addressing the research question than were individual interviews. This article focuses on the methodological issues as they relate to the couple as the dyadic unit of research. Dialogue from the study illustrates the richness of the data gathered using this method.

Older Women's Community Mobility: A Qualitative Exploration

Many of the limitations experienced by community-dwelling older women are related to mobility within their communities. This qualitative study explored community mobility from the perspective of older, community-dwelling women in Winnipeg, Manitoba. Semi-structured interviews were completed with 23 older women (mean age 75.9 years) identified through an existing database. In addition to travels to conduct instrumental activities of daily living and participate in social and recreational activities, the women in the study described trips to fulfil social obligations (e.g., attending funerals, visiting sick friends) and emphasized the importance of these trips. The womens travels through the city were influenced by their perception of risk and the strategies they employed to minimize or avoid risk during the day, in the evening, and during bad weather. Autonomous community mobility provided the women with a sense of independence and control. The findings have potential implications for health care providers and community programmers who work to maintain older women in the community.

Situational Identity and Ethnicity among Ghanaian University Students

A number of recent studies have challenged the concept of an ethnic grou as an absolute category and emphasised that ethnic identity is influenced by the context of the social situation in which the behaviour occurs. 2 Analyst of migrant communities in both West Africa and the Copperbelt have documented the existence of situational ethnicity as a phenomenon in which individual or group identity is defined in terms of categories which vary in their level of inclusiveness. Situational factors have increasingly come to be viewed as influencing the individuals definition of his role as a member of more inclusive groups which allows him to relate to a more culturally heterogeneous community in terms of common elements of identity. 3 Studies concentrating upon the political significance of ethnic identity in public interactions have also stressed that situational factors may play a more important role than cultural similarity in developing more inclusive identity groupings. 4 Finally, analysts dealing with the problems of multiple ethnic loyalties have stressed that individuals and groups have an array of alternate identities from which to choose. They will adopt — or be perceived by others as maintaining — different ethnic identities in different situations.

Rehabilitation ideology and respiratory support technology

This paper examines the impact changing ventilation technology and the ideologies of rehabilitation medicine on the long term adaptations of people with post-polio respiratory disability. Multiple in-depth interviews with 10 respirator-dependent people indicates that cultural ideologies learned during rehabilitation continue to effect the adoption of technology and daily management of respiratory insufficiency. Adaptive strategies through which benefits of technology are maximized and the social costs minimized, have transformed rehabilitation ideologies and moderated the late, aging-related effects of poliomyelitis.