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Highly effective direct-acting antiviral (DAA) agents have changed the landscape of hepatitis C virus infection (HCV) treatment and have become more available to people who inject drugs (PWID) over the past several years. Although many achieve a sustained virologic response (SVR), a small proportion will become re-infected. This study examined experiences of re-infection among participants in Project HERO, a large multi-site treatment trial designed to test alternative treatment delivery models for DAAs. Study staff conducted qualitative interviews with twenty-three HERO participants who experienced reinfection following successful treatment for HCV. Interviews focused on life circumstances and experiences with treatment/re-infection. We conducted a thematic analysis, followed by a narrative analysis. Participants described challenging life circumstances. The initial experience of cure was joyful, leading participants to feel that they had escaped a defiled, stigmatized identity. Re-infection was very painful. Feelings of shame were common. Participants with fully developed narratives of re-infection described both a strong emotional response as well as a plan for avoiding re-infection during retreatment. Participants who lack such stories showed signs of hopelessness and apathy. Though the promise of personal transformation through SVR may be motivating for patients, clinicians should be cautious about how they describe the "cure" when educating patients about HCV treatment. Patients should be encouraged to avoid stigmatizing, dichotomizing language of the self, including terms such as "dirty" and "clean." In acknowledging the benefits of HCV cure, clinicians should emphasize that re-infection does not mean failed treatment ; and that current treatment guidelines support retreatment of re-infected PWID. • The experience of reinfection with HCV has been little studied. • Our narrative study of PWID suggests reinfection can be psychologically devastating. • Patients who lack developed reinfection narratives may be especially vulnerable. • Physicians must avoid stigmatizing language in managing re-infected patients. [ABSTRACT FROM AUTHOR]

Introduction: Increasingly, people who inject drugs (PWID) infected with hepatitis C virus (HCV) are gaining access to highly effective direct-acting antiviral agents (DAAs). Although past studies examined patient experiences with interferon-based treatments, few have explored patient experiences with these new generation therapeutics. Research and real world experience indicate that many PWID can be successfully treated with the new DAAs. Yet a substantial minority fail to complete treatment or achieve only suboptimal adherence. This qualitative study examines experiences with treatment among participants in Project HERO, a large multisite trial designed to compare treatment delivery methods for DAAs. We explored treatment experiences among HERO participants, with the goal of understanding potential barriers to treatment engagement and completion.Methods: We conducted qualitative interviews with a sample of 21 participants, including 14 who completed HCV treatment and 7 participants who discontinued treatment before the end of the 12-week medication course. The first phase of the analysis was descriptive, examining participants' life experiences, histories of disease and treatment seeking, experiences with the program, and barriers to treatment completion. The second phase of the analysis examined differences between completers and noncompleters.Results: Participants offered a variety of reasons for seeking treatment. Both groups of participants reported highly positive experiences of the HERO trial. Participants described research staff as caring, respectful, and nonjudgmental. Substance use was reported by both groups, yet completers described "manageable" substance use, while noncompleters described substance use that sapped their energy and motivation. Shame over drug use was a barrier to treatment completion. Homelessness and a reported lack of social support were much more common in the noncompleter group.Conclusions: Reasons for noncompletion were not related to features of the clinical trial or treatment program. Our results indicate the importance of: 1) recognizing and addressing severe social and economic challenges such as homelessness; and 2) building a program culture of respect and compassion in treatment programs for PWID infected with HCV. [ABSTRACT FROM AUTHOR]

Members of ethnic minority groups are less likely than white middle class people to seek professional treatment for depression and other mental health problems. One explanation is that the former conceptualize depressive symptoms as social problems or emotional reactions to situations, while the latter are more apt to view depression as a disease requiring professional treatment. Though considerable evidence supports this hypothesis, it is rarely explored directly through cross-cultural comparisons. The present study compares conceptual models of depressive symptoms in two diverse cultural groups in New York City (USA): 36 South Asian (SA) immigrants and 37 European Americans (EA) were presented with a vignette describing depressive symptoms and participated in a semi-structured interview designed `:o elicit representational models of the symptoms. Results indicate pervasive differences in representational models across the two groups. SA participants identified the problem" in the vignette in largely social and moral terms. Suggestions for management and health seeking in this Group emphasized self-management and lay referral strategies. EA's, by contrast, often proposed alternate, sometimes contradictory, explanatory models for the depressive symptoms. One model emphasized biological explanations ranging from "hormonal imbalance" to "neurological problem The second model resembled the "situational stress" or `life problem" model described by SA's. [ABSTRACT FROM AUTHOR]

Recent studies indicate that severe chronic pain is common among patients in methadone maintenance treatment (MMT), but no qualitative studies have examined such patients'' experiences of pain and pain treatment. This study used qualitative methods to explore the experiences of MMT patients with chronic pain. Twelve patients screening positive for chronic severe pain on the Brief Pain Inventory were interviewed for the study. Results suggest that chronic severe pain has major consequences in the lives of methadone maintenance patients and may be linked to illegal drug use, social isolation, and role failure. A variety of barriers limited access to effective treatment. A common complaint with care was providers'' lack of concern or inability to “listen.” Patients who were satisfied with treatment focuses on the psychosocial dimensions of care. These preliminary results suggest that treatment approaches should emphasize emotional support, negotiation of explanatory models, and an emphasis on the psychosocial sequelae of pain. However, more research is needed to guide the development of effective treatment strategies. [Copyright &y& Elsevier]

As medical treatment for AIDS has become more complex, the need for good palliative and end-of-life care has also increased for patients with advanced disease. Such care is often inadequate, especially among low-income, ethnic minority patients. The current study investigated physicians’ experiences with caring for dying HIV patients in an underserved, inner city community in the Bronx, NY. The goals of the study included: (1) to investigate the barriers to effective end-of-life care for HIV patients; and (2) to examine physicians’ experiences of role hindrance and frustration in caring for dying patients in the era of HAART. Qualitative, open-ended interviews were conducted with 16 physicians. Physicians identified two core, prescriptive myths shaping their care for patients with HIV. The ‘Good Doctor Myth’ equates good medical care with the delivery of efficacious biomedical care. The role of the physician is defined as technical curer, while the patient''s role is limited to consultation and compliance. The ‘Good Death Myth’ envisions an ideal death which is acknowledged, organized, and pain free: the role of the physician is defined as that of comforter and supporter in the dying process. Role expectations associated with these myths were often disappointed. First, late-stage patients refused to adhere to treatment and were thus dying “unnecessarily.” Second, patients often refused to acknowledge, accept, or plan for the end of life and as a result died painful, chaotic deaths. These realities presented intense psychological and practical challenges for providers. Adaptive coping included both behavioral and cognitive strategies. Successful adaptation resulted in “positive engagement,” experienced by participants as a continuing sense of fascination, gratification, and joy. Less successful adaptation could result in detachment or anger. Participants believed that engagement had a powerful impact on patient care. Working with dying HIV patients in the post-HAART era of efficacious treatment challenges physician''s cherished roles and values. Physicians adapt to the challenge through a variety of cognitive and behavioral strategies. The failure to adapt successfully has psychological consequences for providers that may impact patient care. [Copyright &y& Elsevier]

Vaginal complaints are a common presenting problem in primary care settings. A disease model has dominated current research and treatment paradigms, with little attention to the illness or experiential dimensions of vaginal complaints. In this paper, we report data from a qualitative study of the experiences of women diagnosed with vaginitis. In semi-structured interviews with 44 women in New York City, United States, we investigated women''s interpretations and explanations of their illness, their accounts of its impact on their lives, their experiences with treatment, and the role of vaginal symptoms in communicating distress and anger. We found that women''s explanations of vaginal complaints differed strikingly from the current medical model described in the literature on vaginitis. Vaginal symptoms often occasioned extreme anxiety; their impact on social and sexual functioning could be severe. Finally, vaginal symptoms often functioned to express distress and gender conflict. These findings have important implications for the management of the disorder. [Copyright &y& Elsevier]

Objective: This study describes the perspectives of patients and providers about intrauterine device (IUD) self-removal.Study Design: This qualitative study is a subanalysis of two datasets from a single project, which included semistructured individual interviews with 15 patients and 12 physicians. We derived the data for this analysis from portions of the interviews pertaining to IUD self-removal and provider removal. We analyzed data using deductive and inductive techniques to perform content and thematic analyses.Results: The majority of patients and physicians cited both concerns about and potential benefits of IUD self-removal. Patients cited concerns about safety as the reason they did not wish to remove their own IUD, but physicians did not share these concerns; instead, physicians were apprehensive about not being involved in the discussion to remove the IUD. Both patients and physicians valued having the provider "in the loop" and reported fears about hasty or coerced removal.Conclusions: IUD self-removal is an option that some patients may be interested in. Addressing concerns about safety may make self-removal more appealing to some patients. Addressing physicians' concern about "hasty" removal may require additional training so that providers are better able to support patients' decision making around contraceptive use.Implications: The option of self-removal could have a positive impact on reproductive autonomy and patient decision making. [ABSTRACT FROM AUTHOR]

Objective: This study describes the perceptions and experiences of family physicians when women request early intrauterine device (IUD) removal.Study Design: This qualitative study included semistructured individual interviews with 12 physicians who encountered patients seeking early IUD removal. We identified eligible participants via chart review. We analyzed interviews using deductive and inductive techniques to identify content and themes.Results: Physicians consistently referred to IUDs as the "best" or their "favorite" method, and several joked that they tried to "sell" the IUD during contraceptive counseling. Most reported having mixed or negative feelings when patients opted to remove the IUD. Most encouraged their patients to continue the IUD, hoping to delay removal until symptoms resolved so that removal was not needed. Some physicians reported feeling guilty or as if they had "failed" when a patient wanted the IUD removed. Many providers reported a conflict between valuing patient autonomy and feeling that early removal was not in the patient's best interest.Conclusions: Physicians have complex and contradictory feelings about early IUD removal. While most providers acknowledged the need for patient autonomy, they still reported encouraging IUD continuation based on their own opinion about the IUD.Implications: While IUDs are highly effective and well-liked contraceptives, providers' responses to IUD removal requests have implications for both reproductive autonomy as well as the doctor-patient relationship. More work is needed to ensure that providers remove a patient's IUD when requested. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to describe the thoughts and experiences of women who report discussing intrauterine device (IUD) removal within 9 months of insertion.Study Design: This is a qualitative study, consisting of semistructured individual interviews with 16 women who considered early elective IUD removal. We identified eligible participants via chart review. We analyzed interviews using a modified grounded theory approach.Results: While pain and bleeding were prominent reasons for removal, women also discussed many other symptoms and concerns. Most women reported a strong desire to have a successful IUD experience, and all reported waiting for symptoms to resolve prior to their visit. Some women reported that providers supported their choice, while others reported that providers preferred that they continue the IUD despite symptoms and concerns. Some women reported providers' resistance or refusal to remove the IUDs. The women who reported that their providers were neutral about IUD removal more frequently expressed satisfaction with the visit. When the provider resisted removal, women felt frustrated, even as they acknowledged their doctor's good intentions. In several cases, this may have hurt the doctor-patient relationship.Conclusions: When physicians resist early elective IUD removal, it may impact patient satisfaction and even jeopardize the doctor-patient relationship.Implications: Though IUDs are highly effective and well-liked contraceptives, some patients choose to discontinue the method. Because provision of patient-centered contraceptive care includes IUD removal when requested, providers must ensure that their counseling is unbiased and that they do not place perceived or real barriers to IUD removal. [ABSTRACT FROM AUTHOR]

Self-efficacy, a patient-level factor, has been shown to facilitate patient engagement in treatment and optimize treatment-related outcomes in various health contexts. Research on interventions supporting hepatitis C virus (HCV) direct-acting antiviral (DAA) treatment uptake and adherence among persons who inject drugs (PWID) is needed, but whether self-efficacy factors influence DAA treatment cascade outcomes in this population has been less studied. Using the HERO study data, we analyzed a subset of participants with any general health self-efficacy data (n=708) measured at baseline and end-of-treatment time points using a 5-items instrument (facets: 'goal setting', 'goal attainment', 'having a positive effect', 'being in control', and 'working to improve'). The cascade outcomes included DAA treatment initiation, duration, adherence, completion, and sustained virologic response (SVR). The effect of baseline and change (Δ) scores for composite and item-level self-efficacy on the cascade outcomes was assessed using logistic regression and generalized linear models. Higher baseline composite self-efficacy [adjusted odds ratio (95 % confidence interval) =1.57 (1.07, 2.29)], 'goal attainment' [1.31 (1.03, 1.67)] and 'having a positive effect' [1.33 (1.03, 1.74)] were associated with greater likelihood of treatment initiation. 'Δ Goal attainment' was significantly associated with SVR [1.63 (1.04, 2.53)]. 'Δ Being in control' and 'Δ working to improve' were associated with treatment adherence and duration, respectively. General health self-efficacy positively influences DAA treatment initiation among PWID. 'Goal attainment' facilitates the achievement of DAA treatment-related outcomes. Further studies should assess the effect of self-efficacy related to performing healthcare tasks specific to DAAs on the treatment-related outcomes. • Health self-efficacy raises hepatitis C treatment rates among injection drug users. • Goal attainment self-efficacy especially increases hepatitis C cure rates. • Higher treatment adherence relates to increased 'being in control' self-efficacy. • Longer treatment duration relates to increased 'working to improve' self-efficacy. [ABSTRACT FROM AUTHOR]

Abstract: There has been little study of the content of bioethicists’ communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the “consultant” role, in which bioethicists define and support ethical principles such as those enshrined in the “rational choice” model; and the “mediator” role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the “rational choice” decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists’ contributions generally supporting staff views about end of life care. Bioethicists’ called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, “persuader”, to official roles of “consultant” and “mediator”. [Copyright &y& Elsevier]

Although people who inject drugs (PWID) having the highest incidence and prevalence of hepatitis C virus (HCV) in the US, HCV treatment is rarely provided to PWID due to assumptions about poor adherence and reinfection risk. As direct-acting antiviral agents (DAAs) have achieved sustained virologic response (SVR) rates of 95% or more, evidence-based strategies are urgently needed to demonstrate real-world effectiveness in marginalized patient populations such as PWID. The objectives of this study are: 1) to determine whether either of two patient-centered treatment models – patient navigation (PN) or modified directly observed therapy (mDOT) – results in more forward movement along the HCV care cascade including treatment initiation, adherence, and SVR; 2) using quantitative and qualitative methods, to understand factors associated with lack of treatment uptake, poor adherence (<80%), failure to achieve SVR, DAA resistance, and HCV reinfection. The HERO study is a multi-site, pragmatic randomized clinical trial conducted in eight states where 754 HCV-infected PWID were randomly assigned to either PN or mDOT. This study addresses an urgent need for timely and accurate information on optimal models of care to promote HCV treatment initiation, adherence, treatment completion and SVR among PWID, as well as rates and factors associated with reinfection and resistance after treatment. This clinical trial has the potential to provide valuable information on how to reduce the burden of the HCV epidemic in PWID. [ABSTRACT FROM AUTHOR]