Experiences of diagnosis, stigma, culpability and disclosure in male patients with hepatitis C virus: An interpretative phenomenological analysis

Krzeczkowska, Anna; Flowers, Paul; Chouliara, Zoë; Hayes, Peter; Dickson, Adele

doi:10.1177/1363459319846939

Cited by 8 publications

(17 citation statements)

References 35 publications

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“…Like in other patients with chronic digestive illness, 15,27,28 unsolicited advice regarding diet and exercise was common and experienced as blaming the individual for their symptoms. Blame is a pervasive theme among stigmatized illness, including hepatitis C, 33 lung cancer, 34 and HIV/AIDS 35,36 . At present, the literature on dietary management of gastroparesis is limited.…”

Section: Discussionmentioning

confidence: 99%

Stigma experiences of patients living with gastroparesis

Taft

Craven

Adler

et al. 2021

Neurogastroenterology Motil

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Introduction Stigmatization toward chronic digestive diseases is well documented. Patients perceive others hold negative stereotypes toward their disease and may internalize these beliefs as true. Because of this, stigmatization is associated with poor outcomes across disease‐related and psychosocial domains. No study to date evaluates stigmatization toward patients living with gastroparesis (GP), a poorly understood disease affecting gastric motility. We aimed to gain deep understanding of stigma in patients living with gastroparesis. Methods Patients with GP were recruited from two university‐based gastroenterology practices as well as patient advocacy support groups. Participants underwent a semi‐structured qualitative interview about their experiences with stigma related to their GP diagnosis, which were audio‐recorded and transcribed to text for analysis using a grounded theory approach. Major themes with representative quotations were documented. Results Twenty‐three patients participated. The majority were White, female, with idiopathic GP under the care of a gastroenterologist. All patients reported stigma related to GP. Seven major themes were found: stigma from healthcare providers, stigma within interpersonal relationships, GP as an invisible disease, blame, unsolicited suggestions on how to manage disease, disclosure, and stigma resistance. Conclusions This is the first study to describe stigma experiences in patients with GP. The results suggest patients experience considerable stigmatization toward their condition from multiple sources. Patients also demonstrated resistance to negative beliefs, which can serve as a protective factor for the negative effects of disease stigma. Clinicians should be aware of stigma in GP patients, including their own potential internal biases and behaviors.

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Section: Discussionmentioning

confidence: 99%

Stigma experiences of patients living with gastroparesis

Taft

Craven

Adler

et al. 2021

Neurogastroenterology Motil

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“…In our study, depression and anxiety were independently associated with stigma, when the model was adjusted for age, sex, marital status, and job. Based on previous studies, aspects of perceived stigma include social rejection, isolation, occupational insecurity, and internalized shame, which are predictors of low self-worth, which can increase anxiety and depression, and reduce adaptation to the disease [40][41][42]. The results of previous studies showed that people with chronic diseases, such as AIDS and lung cancer, experience a relatively high level of stigma which is significantly associated with psychological disorders, such as anxiety and depression [33,[43][44][45].…”

Section: Discussionmentioning

confidence: 99%

Stigma, Anxiety, Depression, and Quality of Life Among Patients With Hepatitis C in Iran

Movahedi

Moshirpanahi²,

Mokhayeri³

et al. 2022

CJHR

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Background: Hepatitis C is one of the most challenging viral infections worldwide. Patients with hepatitis C may experience some disease-related stigma. Objectives: The aim of this study was to evaluate perceived stigma and its role in predicting anxiety, depression, and quality of life among patients with hepatitis C. Materials & Methods: This cross-sectional analytic study was conducted in behavioral counseling centers of three cities, i.e., Khorramabad, Boroujerd and Noorabad, located in the western part of Iran, from May to August 2019. Stratified multistage sampling was used to select 144 patients diagnosed with hepatitis C. The WHOQOL-BREF Scale, Stigma Impact Scale (SIS), Beck Depression Inventory, Second Edition (BDI-II), and Beck Anxiety Inventory, Second Edition (BAI) were used to collect the data. Univariate and multivariate linear regression models were used to estimate the association of covariates on stigma and quality of life. The Stata 16 software was used to analyze the data at the significance level of 0.05. Results: The mean perceived stigma was 66.805 ± 1.291 with social rejection and social isolation achieving the highest scores (23.409 ± 0.551, 20.208 ± 0.437). In the multivariate regression model, depression (B=0.7, 95%; CI: 0.5, 0.89) and anxiety (B=0.21, 95%; CI: 0.02, 0.41) had direct significant associations with stigma independent of age, sex, marital status, and occupation. Depression (B=-0.27, 95%; CI:-0.47, -0.07), anxiety (B=-0.33, 95%; CI: -0.5, -0.16), and stigma (B=-0.41, 95%; CI: -0.56, -0.26) were inversely associated with patients’ quality of life. Conclusion: This study found a high perceived stigma score among HCV patients. Depression and anxiety were significantly associated with stigma. The quality of life of HCV patients were inversely associated with depression, anxiety, and stigma scores.

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“…Of the studies, three studies met seven out of 10 of the qualitative critical appraisal criteria (Harris et al, 2014(Harris et al, , 2016Krzeczkowska et al, 2021). All studies scored "Yes" on their congruity between their qualitative methodology and chosen method of data collection, analysis of data, and interpretation of the findings, whereas none of the authors described their influence on the research, and vice-versa.…”

Section: Critical Appraisalmentioning

confidence: 99%

“…The included studies were published from 2014 to 2021 and were conducted in Australia (Rance et al, 2017), United Kingdom (UK) (Harris et al, 2014(Harris et al, , 2016Krzeczkowska et al, 2021), and United States (US) (Barocas et al, 2014;Skeer et al, 2018). Qualitative methodology (Harris et al, 2014(Harris et al, , 2016Krzeczkowska et al, 2021;Rance et al, 2017; (Barocas et al, 2014) were used. Interviews were conducted in all articles and a survey was also undertaken in the mixed-methods article by Barocas et al (2014).…”

Section: Study Characteristicsmentioning

confidence: 99%

The experiences of people who use injection drugs with accessing hepatitis c testing and diagnosis in western countries: A scoping review

Ho,

Vandyk,

Horvath

et al. 2023

Public Health Nursing

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BackgroundThe purpose of this scoping review was to summarize the literature that reported on the experiences of people who use injection drugs’ access to hepatitis C testing and diagnosis in Western countries.MethodsThe initial search was conducted in 2020 and an updated review was completed in 2022. Seven electronic databases were searched using a peer‐reviewed search strategy and included: full‐text, peer‐reviewed studies with people who inject(ed) drugs, hepatitis C testing or diagnosis, conducted in Western countries. Excluded were studies published prior to 2014 and intervention studies. Two‐step screening was conducted in duplicate. Conventional content analysis was used.ResultsSix studies were found from the search. The studies were published between 2014 and 2021 in Australia, United Kingdom, and United States. A total of 19 participant characteristics were extracted to contextualize their experiences, demonstrating a lack of demographic data. Four themes were found: Awareness and Knowledge, Stigma, Healthcare Service, and Psychological Responses. There were 58 occurrences of client quotes where participants described their experiences, 29 occurrences of quotes describing client‐identified barriers, and 14 occurrences of quotes describing client‐identified facilitators.ConclusionA scoping review was conducted to present the experiences, barriers, and facilitators of people who use injection drugs to hepatitis C testing. The lack of demographic data and connection to client quotes further exacerbates the inequities among the population by overlooking their intragroup identities. Understanding their experiences of accessing hepatitis C testing and collecting demographic data will help advance health policies and interventions targeting people who use injection drugs.

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Experiences of diagnosis, stigma, culpability and disclosure in male patients with hepatitis C virus: An interpretative phenomenological analysis

Cited by 8 publications

References 35 publications

Stigma experiences of patients living with gastroparesis

Stigma experiences of patients living with gastroparesis

Stigma, Anxiety, Depression, and Quality of Life Among Patients With Hepatitis C in Iran

The experiences of people who use injection drugs with accessing hepatitis c testing and diagnosis in western countries: A scoping review

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