Motives for meaningful involvement in rural AIDS service organizations.

The research described herein was a three-year exploratory descriptive study to examine how meaningful involvement (MIPA) is conceptualized and experienced in rural regions of the Maritime provinces of Canada. The focus of this paper is one aspect of the research; i.e., what motivates the clients of AIDS Service Organizations (ASOs) in rural Canada to become meaningfully involved? We interviewed 34 people who were past or current clients of ASOs in Maritime Canada and who self-reported as engaging in at-risk behaviors for HIV or living with HIV. The interviews explored participants' perspectives about their motives for becoming meaningfully involved in an ASO. Three themes regarding motives for MIPA were revealed: (1) meeting personal needs; (2) making a difference to others; and (3) recognizing a fit between their skills, goals, needs and the opportunities and experiences within the ASO and with other ASO clients. Participants generally cited more than one motive. This research study contributed to the field of knowledge about the motives for MIPA in which it reveals (1) that MIPA was conceptualized by the rural ASO clients as whatever participation provided them personal meaning (i.e., by fulfilling a personal need, by making a difference, and by recognizing a fit) and (2) the important role that ASO staff and volunteers have in fostering and sustaining MIPA. The study also highlighted a trajectory of involvements that support the need for ASOs to entertain a wide range of roles that are assumed as MIPA.

Engagement of parents in on-line social support interventions.

The purpose of this scoping review was to determine what the relevant research informs us about which parents of children with chronic disease and/or disability are likely to engage in an on-line social support program and why they choose to be engaged. The review included 16 peer-reviewed research reports about on-line social support offered to parents of children with chronic disease and/or disability. It was conducted using scoping review approaches recommended by H. Arskey and L. O'Malley (2005). A key finding of this review is that it appears that the development of on-line social support interventions for parents may not have integrated what is known in the field of Internet technology as necessary to engage users. This has implications for nurses wishing to provide on-line social support for parents. As well, it highlights future directions for research, including investigations of which parents are likely to engage in on-line social support interventions and the features of the intevention that will attract and sustain them as participants.

Ripples in the water: a toolkit for Aboriginal people on hemodialysis.

In 2004-2005, the authors were engaged in a community-based research study with people of Elsipogtog First Nation to determine the causes of and solutions to non-adherence among community members with chronic kidney disease. This study highlighted the need for a toolkit intended for Aboriginal people who are required to undergo hemodialysis at a dialysis unit in a city away from their rural community, so that they are sufficiently educated, supported and resourced to access and experience culturally relevant health care. This paper presents the findings of a two-year community-based research study to develop the prototype or model for such a toolkit. The research involved meeting with nine community members in group meetings at least monthly over the two years to determine what such a toolkit should include and how it should best be presented. It also entailed an extensive review of relevant literature and relevant educational materials, as well as individual interviews with key stakeholders. The project resulted in a culturally relevant toolkit that can be staged according to people's readiness for the information and that fosters collaborative discussions between patients, family members and health care practitioners.

Contextual factors influencing the evolution of nurses' roles in a primary health care clinic.

OBJECTIVES: The purpose of the research was to explore the everyday experiences and responses of stakeholders of a university-sponsored nurse-managed clinic (CHC) in regard to how nurses' roles in the clinic changed over time and the factors that influenced this change. DESIGN AND SAMPLE: The research used a qualitative interpretive description design to interpret participants' accounts of their experience and perspectives as constructed narratives. The participants (N=23) included clients, community members who were volunteers at the CHC, staff of other community agencies or organizations, and nursing or social work students who had a clinical learning experience at the CHC. MEASURES: Data collection involved two interviews, one semistructured, face-to-face interview at the location selected by the participant, and a group interview held in a boardroom at the CHC. Each interview lasted approximately 60-90 min. RESULTS: The research findings revealed the profound effects of the social, political, and economic context in determining nurses' roles within a nurse-managed primary health care clinic. The evolution of nursing roles occurred in reaction to these effects, causing the nurses within the CHC to juggle their priorities and commitments. CONCLUSIONS: The study provides a contemporary example of the political activism work of nurses that is often invisible and illustrates how the commitment of primary health care nurses to social justice contributes in a significant way to the resolution of health inequities experienced by marginalized populations.

Future directions for investigation of fatigue in chronic hepatitis C viral infection.

Fatigue is a common and often debilitating symptom for people living with chronic hepatitis C viral infection. Numerous published reports in the past decade have attempted to address the nature and aetiology of fatigue in chronic hepatitis C; however, this field is plagued with lack of clarity about how hepatitis C virus (HCV)-related fatigue occurs and when it is experienced by the infected person. Consequently, both patients and clinicians alike are unclear about how to mediate or prevent the negative consequences of HCV-related fatigue. In the following article, the authors identify areas of ambiguity and incongruity that have evolved primarily from the underlying assumptions and methodological decisions of researchers in the field of HCV-related fatigue. Research related to fatigue in chronic illness is drawn upon to suggest future directions for investigations and interventions in the field of HCV-related fatigue. Future research needs to move beyond the subjective symptomatology of HCV-related fatigue and begin to account for the multidimensional and contextualised nature of the fatigue experience.

Engagement as an ethical imperative in harm reduction involving at-risk youth.

BACKGROUND: The focus of the article is the engagement of at-risk youth in harm reduction interventions for illicit drug use. Literature in the fields of education, recreation, health education, and community development suggest that engaging young people in the planning, implementation and evaluation of harm reduction interventions will not only benefit those who participate, but will contribute to the sustainability and effectiveness of the interventions. METHODS: A review of published research about the efficacy of harm reduction interventions for at-risk youth was undertaken. RESULTS: Harm reduction interventions with at-risk youth have focused on researcher-delivered, short-term educational sessions in which engagement is a minor consideration. Assumptions about how to engage at-risk youth are untested and problematic to incorporate when executing harm reduction strategies. CONCLUSIONS: If harm reduction approaches are ethically mandated to address the meaningful engagement of at-risk youth, there are many challenges pertaining to the nature and outcomes of such engagement that need to be investigated in future research.

Living with the stigma of hepatitis C.

Stigma poses significant challenges to those with chronic hepatitis C (CHC), their social networks, communities, and society. This study's purpose was to identify and describe how people lived with CHC and made self-care decisions. Data are presented from interviews and daily recordings of 26 study participants. Experiences of stigma were attributed primarily to misconceptions about the cause and transmission of the disease and its association with illicit drug use. Perceptions and responses to stigma were context-dependent, flexible, and varied over time. Stigma created barriers to access of health services and undermined the social supports required to address self-care needs and illness management. The extent and severity of stigma suggests that interventions to reduce or eliminate stigma will require individual, structural, and systemic changes. Further study is required to clarify the relationship between the trajectory of CHC and the experience and responses to stigma.

A cross-cultural comparison of the developmental evolution of expertise in diabetes self-management.

AIMS: The authors compare the findings of two research studies, one conducted in Japan and the other in Canada, about the developmental evolution of self-management of diabetes. In this article, the authors identify the similarities and differences that exist in the research data, proposing that the differences are situated in the different cultural perspectives of self-management that exist in both countries. BACKGROUND: Researchers have acknowledged that self-management has cultural dimensions. Despite this, however, there are few studies that have provided a cross-cultural comparison of the experience of self-management among different cultural groups. DESIGN: The authors conducted a critical comparative analysis of two models of developing expertise in diabetes self-management. The review included an analysis of the cultural meanings of the various terms and the underlying assumptions of both models. CONCLUSIONS: The models shared many similarities; however, their differences were identified, such as the meaning and interpretation of various words or experiences, and shaped by the culturally bound perspectives of self and health. RELEVANCE TO CLINICAL PRACTICE: The findings serve as a caution to imposing ethnocentric views and interpretations in diabetes care. In addition, they remind us about the importance of asking people with diabetes about what they understand, desire and understand. The findings challenge nurses to reflect on how the development of self-management of diabetes in various national contexts is influenced by health care practices that focus on control or harmony.

Methodological issues in interviews involving people with communication impairments after acquired brain damage.

Qualitative research has made a significant contribution to the body of knowledge related to how people experience living with various chronic diseases and disabilities; however, the voices of certain vulnerable populations, particularly those with impairments that affect their ability to communicate, are commonly absent. In recent years, a few researchers have attempted to explore the most effective ways to ensure that the voices of people with communication impairments from acquired brain damages can be captured in qualitative research interviews; yet several methodological issues related to including this population in qualitative research remained unexamined. In this article, the authors draw on insights derived from their research on the experiences of adult survivors of stroke and traumatic brain injury to describe methodological issues related to sampling, informed consent, and fatigue in participant and researcher while also making some recommendations for conducting qualitative interviews with these populations.

The depiction of stigmatization in research about hepatitis C.

In the past decade, there has been an increasing emphasis by researchers regarding the stigmatization of people who are hepatitis C positive as they seek health care. Because the vast majority of people with hepatitis C have a history of injection drug use, they are frequently assumed by practitioners to be injection drug users (IDUs), blamed for acquiring the disease, and viewed as irresponsible, immoral, and unworthy. Such stigmatization may cause people who have hepatitis C to avoid testing, treatment and care, as well as to not disclose their hepatitis C or injection drug use to practitioners. The purpose of this paper is to critically examine the representation of stigmatization in 21 published research reports from 1995 to 2006, with a specific focus on how these depictions have shaped the current understanding of interventions to address stigmatization of people with hepatitis C by health care practitioners. We will identify two themes in this literature: (1) hepatitis C-related stigmatization in health care settings arises primarily from practitioners' negative views of injection drug use, and (2) practitioners' negative attitudes toward people with hepatitis C are the result of their lack of awareness and/or information about the disease and/or about injection drug use. We will illustrate that similar themes have informed anti-stigma initiatives in other diseases, notably HIV/AIDS and mental illness, which have had little sustained effect in changing practitioners' behaviour toward the stigmatized population. In conclusion, we will call for research that considers factors beyond the individual practitioner as contributing to the stigmatization of people with hepatitis C, such as social, structural and institutional forces that shape practitioners' interactions with people with hepatitis C in health care settings.

The construction of hepatitis C as a chronic illness.

The purpose of the article is to present one aspect of the findings of a descriptive, exploratory investigation of the self-care decision making of 33 adults diagnosed with chronic hepatitis C (Hep C), specifically how they experienced living with this disease as a chronic illness. The findings were interpreted from a social constructivist perspective in which Hep C was viewed as both a biomedical entity and a social construction. The authors will suggest that although Hep C is constructed by people with the disease as a chronic illness, the care of this disease is often based on an acute model that acknowledges its chronicity only in terms of the persistence of the virus. The article points to the need for a model of Hep C care that incorporates the dimensions of the chronic illness experience.

How different can you be and still survive? Homogeneity and difference in clinical nursing education.

The article focuses on a component of a three-year institutional ethnography regarding the construction of cultural diversity in clinical education. Students in two Canadian schools of nursing described being a nursing student as bounded by unwritten and largely invisible expectations of homogeneity in the context of a predominant discourse of equality and cultural sensitivity. At the same time, they witnessed many incidents, both personally and those directed toward other individuals of the same culture, of clinical teachers problematizing difference and centering on difference as less than the expected norm. This complex and often contradictory experience of difference and homogeneity contributed to their construction of cultural diversity as a problem. The authors provide examples of how the perception of being different affected some students' learning in the clinical setting and their interactions with clinical teachers. They will illustrate that this occurred in the context of macro influences that shaped how both teachers and students experienced and perceived cultural diversity. The article concludes with a challenge to nurse educators to deconstruct their beliefs and assumptions about inclusivity in nursing education.

The koala has claws: applications of the shifting perspectives model in research of chronic illness.

The Shifting Perspectives Model of Chronic Illness was recently developed in the metasynthesis of more than 250 qualitative research reports about chronic illness. The model proposes that people with chronic illness view living with their disease in accordance with how much wellness or illness is in the foreground of their experience. It also identifies a number of circumstances and situations that can prompt a shift from wellness or illness in the foreground to wellness or illness in the background. One such situation is being interviewed or observed as a participant in research about the experience of living with a chronic disease. The author reviews the model, providing excerpts from an interview with a key informant with a chronic illness to substantiate the model and to identify a number of implications of the model for researchers. She highlights some of the difficulties and limitations encountered when researchers attempt to define the experience of living with chronic illness through the lens of a single perspective.