Reasons for Nonattendance across the Hepatitis C Disease Course.

This descriptive qualitative study examined the patient, provider, and institutional factors contributing to nonattendance for hepatitis C (HCV) care throughout the disease course. Eighty-four patients and health and social care providers were interviewed. Thematic analysis of the data yielded 6 interrelated nonattendance themes: self-protection, determining the benefits, competing priorities, knowledge gaps, access to services, and restrictive policies. Factors within the themes varied with the disease course, type of provider/service, and patient context. Nonattendance could span months to years and most frequently began at diagnosis where providers either advised that followup was not necessary or did not recommend any followup. The way services were organized (low barrier access) and delivered (nonjudgmental approach) and higher HCV knowledge levels of patients and providers encouraged attendance. This is the first study to explore the reasons for nonattendance for HCV care throughout the disease course and validate them from multiple perspectives. There are missed opportunities for providers to encourage attendance throughout the disease course beginning at diagnosis. Interventions required include development of integrated health and social service delivery models; mechanisms to improve knowledge dissemination of the disease, its management, and treatment; and implementation of standardized followup protocols for liver disease monitoring in primary care.

"It's a big part of our lives": A qualitative study defining quality of hepatitis C care from the patient's perspective.

Nurses play a key role in the ongoing treatment and management of chronic conditions such as Hepatitis C. Their skills in counseling, education, and as liaisons between patients, support services, and other healthcare providers make them crucial in the management of patients with Hepatitis C. Qualitative methods were used to explore and describe quality-of-care perspectives of patients receiving care in viral hepatitis clinics. Data were collected through focus group interviews at three hepatitis prevention and care demonstration projects located in underserved rural and small urban areas in British Columbia, Canada. Key themes were identified and used to construct a "Hepatitis C care model" and generate quality-of-care statements. These statements were then rated by another group of participants with Hepatitis C, using concept mapping. Most themes identified by the participants in focus groups (n = 21) related to care provision processes (autonomy, communication, education/information, continuity of care, professional competence, and support) rather than structure or outcomes of care. Concept-mapping participants (n = 20) rated communication as the key theme. Participants also highlighted the supportive role nurses played. Hepatitis C programming can be improved by leveraging nurses' strengths within multidisciplinary teams to address patient's concerns about process and communication issues.

Stigma in the context of hepatitis C: concept analysis.

AIM: This paper is a report of a concept analysis of stigma in the context of hepatitis C. BACKGROUND: Stigma is a complex and powerful social phenomenon that influences the course of illness and marginalizes populations. Knowledge of hepatitis C stigma is central to assisting people with hepatitis C self-manage their illness and reduce the disease burden. DATA SOURCES: Thirty studies from 1995 to 2007 located in health and social sciences databases constituted the data for an evolutionary concept analysis and ecological theory guide the review. FINDINGS: Stigma is a subjective and variable, perceived and/or experienced phenomenon, most frequently but not exclusively viewed as negative, that has interrelated intrapersonal, interpersonal and structural or institutional dimensions. The antecedents of hepatitis C stigma are help-seeking situations most frequently occurring in healthcare settings. Attributes include the association of hepatitis C with illicit drug use, fear of transmission of a contagious and life-threatening infection, acceptable level of risk, and the power to impose restrictions on the part of healthcare practitioners, family and friendship networks and society. Stigma consequences are mainly, but not exclusively, negative. CONCLUSION: A central and distinctive feature of hepatitis C stigma in the Western world is its association with illicit drug use. Further research is required to understand the complexities associated with the sociocultural, situational and structural features that influence the stigma experience as well as the trajectory of the disease to understand the concept better and inform nursing practice.

Interprofessional partnerships in chronic illness care: a conceptual model for measuring partnership effectiveness.

INTRODUCTION: Interprofessional health and social service partnerships (IHSSP) are internationally acknowledged as integral for comprehensive chronic illness care. However, the evidence-base for partnership effectiveness is lacking. This paper aims to clarify partnership measurement issues, conceptualize IHSSP at the front-line staff level, and identify tools valid for group process measurement. THEORY AND METHODS: A systematic literature review utilizing three interrelated searches was conducted. Thematic analysis techniques were supported by NVivo 7 software. Complexity theory was used to guide the analysis, ground the new conceptualization and validate the selected measures. Other properties of the measures were critiqued using established criteria. RESULTS: There is a need for a convergent view of what constitutes a partnership and its measurement. The salient attributes of IHSSP and their interorganizational context were described and grounded within complexity theory. Two measures were selected and validated for measurement of proximal group outcomes. CONCLUSION: This paper depicts a novel complexity theory-based conceptual model for IHSSP of front-line staff who provide chronic illness care. The conceptualization provides the underpinnings for a comprehensive evaluative framework for partnerships. Two partnership process measurement tools, the PSAT and TCI are valid for IHSSP process measurement with consideration of their strengths and limitations.

Capacity enhancement of hepatitis C virus treatment through integrated, community-based care.

BACKGROUND: An estimated 250,000 Canadians are infected with the hepatitis C virus (HCV). The present study describes a cohort of individuals with HCV referred to community-based, integrated prevention and care projects developed in British Columbia. Treatment outcomes are reported for a subset of individuals undergoing antiviral therapy at four project sites. METHODS: Four demonstration projects based on a public health nurse and physician partnership were established in rural and small urban centres in British Columbia. Comprehensive medical assessments determined whether individuals received treatment, or counselling and education. Outcomes of the treatment group were compared with published randomized controlled trials. Client demographics were mapped using geographical information systems applications. RESULTS: A total of 1795 individuals were referred to the clinics for medical assessment between September 2001 and December 2005. After assessment, 26% were eligible for therapy, while 74% received counselling and education. Wait times decreased annually, with one-half of all referrals assessed within 30 days. Combination antiviral therapy was initiated in 363 clients with interferon plus ribavirin (n=36) or pegylated interferon plus ribavirin (n=327). Treatment outcomes were available for 205 individuals. The overall rate of sustained virological response was 61% (126 of 205 individuals). The number of individuals assessed at each site represented, on average, 20% of the total cumulative reported HCV cases in the catchment areas. DISCUSSION: The study findings illustrate how a public health nurse and physician partnership can service a population with complex medical needs while simultaneously increasing local capacity. Treatment outcomes were comparable with published clinical trials.

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.

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.