Stigmatization, discrimination, violation of autonomy, and compromised confidentiality: A descriptive qualitative analysis of the lived experiences of people living with HIV in healthcare settings in Turkey

Abstract Background: Human immunodeficiency virus (HIV) infection rates have been gradually increasing in Istanbul, Turkey. Many people living with HIV (PLWH) in Turkey encounter difficulties such as adapting to a chronic disease and maintaining continuous access to healthcare services. In this study, we explored the challenges PLWH face in their daily lives and understand their perceptions of themselves, healthcare professionals, their social spheres, and healthcare services via their expressed lived experiences in the healthcare setting.Method: Individual semi-structured in-depth interviews were conducted face-to-face with 20 people living with HIV in Istanbul. All the interviews were voice-recorded and transcribed verbatim except one, upon participant request, for which the interviewer took notes. These logs and the interviewer’s filed notes were analyzed thematically using the inductive content analysis method. Thematic pattern tables showing the relations of relevant contexts, main themes, sub-themes, and codes were then formed. Results: The results highlighted the following themes: problems with patients’ autonomy, failure to protect patients’ confidentiality and privacy of personal health data, spouse/partner notification issues, the negative effect of living with HIV on their perception of themselves, stigmatizing and discriminatory attitudes intrinsic in healthcare professionals’ approaches, and their struggle to deal with such approaches. Our participants’ experiences suggest that PLWH may face multi-dimensional challenges that directly and negatively affect their lives, identities, relationships, and social status in Turkey. Conclusion: This study showed the complex and shifting nature of stigma experiences. Healthcare professionals’ discriminative or inappropriate attitudes and customs prevailing in healthcare institutions impair PLWH’s utilization of healthcare services. Additionally, structural factors such as social pressure, societal ignorance about HIV, limited access to HIV prevention, and present barriers to HIV care and support originating from current regulations contribute to these challenges. Based on these results, we argue that it is necessary to raise healthcare professionals’ and society’s knowledge and awareness concerning HIV, to train qualified community service personnel providing assistance, care, support, and education to patients, to establish a well-functioning referral system, and to develop national policies to establish appropriate partner notification services. We believe that such interventions should begin to address the social, economic, and structural factors that drive stigma.

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Lived experiences of people living with HIV: a descriptive qualitative analysis of their perceptions of themselves, their social spheres, healthcare professionals and the challenges they face daily

BMC Public Health ◽

10.1186/s12889-021-10881-y ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Gamze Senyurek ◽

Mustafa Volkan Kavas ◽

Yesim Isil Ulman

Keyword(s):

Lived Experiences ◽

Healthcare Professionals ◽

Healthcare Providers ◽

Partner Notification ◽

Healthcare Setting ◽

Healthcare Services ◽

People Living With Hiv ◽

Structural Factors ◽

Hiv Diagnosis ◽

Living With Hiv

Abstract Background Human immunodeficiency virus (HIV) infection rates have been gradually increasing in Istanbul, Turkey. Many people living with HIV (PLWH) here encounter difficulties, for example, in adapting to the chronic disease and obtaining continuous access to healthcare services. In this study, we aimed to explore the challenges PLWH face in their daily lives and understand their perceptions of themselves, healthcare professionals and services, and their social spheres via their expressed lived experiences in the healthcare setting. Method Individual semi-structured in-depth interviews were conducted face-to-face with 20 PLWH in Istanbul. All the interviews were voice-recorded and transcribed verbatim except one, upon participant request, for which the interviewer took notes. These logs and the interviewer’s notes were analyzed thematically using the inductive content analysis method. Results The themes concerned experiences in three distinct contexts: 1) Interactions with healthcare providers; 2) Participants’ responses to their HIV diagnosis; and 3) Interactions with their social networks. Firstly, the results highlighted that the participants perceived that healthcare professionals did not inform them about the diagnosis properly, failed to protect patients’ confidentiality and exhibited discriminative behaviors towards them. Secondly, after the diagnosis the participants had difficulty in coping with their unsettled emotional state. While many ceased sexual activities and isolated themselves, some sought support. Lastly, living with HIV affected their relationships with their families and friends either positively or negatively. Moreover, they had to face the difficulties concerning spouse/partner notification issues about which many needed professional support. Conclusion Healthcare professionals’ discriminative or inappropriate attitudes and customs in healthcare institutions are perceived to impair PLWH’s utilization of healthcare services. Structural factors such as social pressure, societal ignorance about HIV, limited access to HIV prevention, and regulatory barriers might contribute to these challenges. The results suggest that it is necessary to raise healthcare professionals’ and society’s awareness about HIV and develop national policies to establish a well-functioning referral system and appropriate spouse/partner notification services.

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Stigmatization, discrimination, violation of autonomy and compromised confidentiality: Lived experiences of people living with HIV on the onset of their illness in Turkey

10.21203/rs.3.rs-33490/v1 ◽

2020 ◽

Author(s):

Gamze Senyurek ◽

Mustafa Volkan Kavas ◽

Yesim Isil Ulman

Keyword(s):

Healthcare Professionals ◽

Partner Notification ◽

Healthcare Services ◽

People Living With Hiv ◽

Limited Data ◽

Structured Interviews ◽

Health Institutions ◽

Failure To Protect ◽

Utilization Of Healthcare ◽

Living With Hiv

Abstract Background: It’s known that people living with HIV (PLWH) are subjected to stigmatization and discrimination while accessing healthcare services. The purpose of this study is to understand the perceptions of PLWH in Turkey, about whom there are limited data on how their lives are affected by such experiences. Methods: Semi-structured interviews were carried out with 20 people, and the obtained data were analyzed thematically.Results: The results highlighted the following themes: problems with patients’ autonomy, failure to protect patients’ confidentiality and personal health data, spouse/partner notification issues, and stigmatizing and discriminatory attitudes intrinsic to healthcare professionals’ approach. The attitudes of healthcare professionals and health institutions negatively influence the utilization of healthcare services by PLWH. Conclusions: We have argued the necessity to raise the healthcare professionals’ and the society’s knowledge and awareness, and develop national policies that would contribute to structure partner notification services and prevent HIV-related discrimination and stigmata.

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The Lived Experiences of Stigmatization in the Process of HIV Status Disclosure among People Living with HIV in Taiwan

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18105089 ◽

2021 ◽

Vol 18 (10) ◽

pp. 5089

Author(s):

Chia-Hui Yu ◽

Chu-Yu Huang ◽

Nai-Ying Ko ◽

Heng-Hsin Tung ◽

Hui-Man Huang ◽

...

Keyword(s):

Lived Experiences ◽

Healthcare Professionals ◽

Social Stigma ◽

People Living With Hiv ◽

Hiv Status ◽

Structured Interviews ◽

Two Phases ◽

Hiv Status Disclosure ◽

Living With Hiv ◽

Status Disclosure

People living with HIV (PLWH) face social stigma which makes disclosure of HIV status difficult. The purpose of this descriptive qualitative study was to understand the lived experiences of stigmatization in the process of disease disclosure among PLWH in Taiwan. Analysis of the semi-structured interviews from 19 PLWH in Taiwan revealed two phases and six themes. Phase one “experiences before disclosure” involved three themes: “Struggles under the pressure of concealing the HIV Status,” “Torn between fear of unemployment/isolation and desire to protect closed ones,” and “Being forced to disclose the HIV status.” Phase two “experiences after disclosure” included three themes: “Receiving special considerations and requirements from school or work,” “Receiving differential treatments in life and when seeking medical care,” and “Stress relief and restart.” Healthcare professionals need to assess stigmatization in PLWH and develop individualized approaches to assist with the disease disclosure process.

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Systematic identification and referral of smokers attending HIV ambulatory care highlights the failure of current service provision in an at-risk population

BMJ Open Respiratory Research ◽

10.1136/bmjresp-2018-000395 ◽

2019 ◽

Vol 6 (1) ◽

pp. e000395

Author(s):

James Brown ◽

Christianna Kyriacou ◽

Elisha Pickett ◽

Kelly Edwards ◽

Hemal Joshi ◽

...

Keyword(s):

Smoking Cessation ◽

Smoking Status ◽

Healthcare Services ◽

Lifestyle Changes ◽

Hiv Care ◽

People Living With Hiv ◽

Smoking Cessation Services ◽

Living With Hiv ◽

Systematic Identification ◽

The Impact

IntroductionPeople living with HIV (PLWH) are more likely to smoke than the general population and are at greater risk of smoking-related illness. Healthcare services need to address this burden of preventable disease.MethodsWe evaluated the impact of a brief intervention that asked service users about smoking when they attended for ambulatory HIV care in London, UK, and offered referral to smoking cessation.ResultsOverall, 1548 HIV-positive individuals were asked about their smoking status over a 12-month period. Of this group, 385 (25%) reported that they were current smokers, 372 (97%) were offered referral to smoking cessation services and 154 (40%) accepted this. We established an outcome of referral for 114 (74%) individuals. A total of 36 (10% of smokers) attended stop smoking clinics and 16 (4%) individuals were recorded as having quit smoking.DiscussionThe simple intervention of asking PLWH about tobacco smoking and offering referral to smoking cessation services rapidly identified current smokers, 40% of whom accepted referral to smoking cessation services. This highlights the importance of promoting behaviour and lifestyle changes with every contact with health services. However, a large proportion of those referred were either not seen in local services or the outcome of referral could not be ascertained. If the risk of smoking-related morbidity among PLWH is to be reduced, more sustainable referral pathways and ways of improving uptake of smoking cessation services must be developed.

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‘Treating a patient should be approached in a holistic manner’: collaboration of doctors and physiotherapists in the rehabilitation of people living with HIV

South African Family Practice ◽

10.4102/safp.v60i2.4866 ◽

2018 ◽

Vol 60 (2) ◽

pp. 53-57

Author(s):

Stacy Maddocks ◽

Verusia Chetty ◽

Arishna Maghoo ◽

Nkuleleko Mhlongo ◽

Nsindiso Mthembu ◽

...

Keyword(s):

Multidisciplinary Team ◽

Healthcare Professionals ◽

Healthcare Setting ◽

Structured Interview ◽

Scope Of Practice ◽

People Living With Hiv ◽

Team Interaction ◽

Good Communication ◽

Resource Limitations ◽

Living With Hiv

People living with HIV facing impairments and subsequent disabilities related to the virus and its treatment require involvement of a collaborative team of healthcare professionals to ensure reintegration into daily life and community living. Healthcare teams responsible for this care include doctors and physiotherapists. This paper explores the collaboration of doctors and physiotherapists in the rehabilitation of people living with HIV in a semi-rural healthcare setting in KwaZulu-Natal, South Africa. Six doctors and two physiotherapists were interviewed using a semi-structured interview guide. The qualitative approach led to the emergence of five themes, namely a biomedical versus biopsychosocial approach; scope of practice challenge; multidisciplinary team enigma; institutional structure limitations; and recommendations from healthcare professionals. Both groups of professionals believed that a lack of understanding of the scope of practice and role of the associate profession in the multidisciplinary team led to poor referrals and lack of communication. Furthermore, shortage of personnel and resource limitations posed barriers to effective team interaction. Timely referrals, good communication and understanding of roles were suggested as endorsements to improved collaboration.

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Recommendations for integrating physiotherapy into an interprofessional outpatient care setting for people living with HIV: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2018-026827 ◽

2019 ◽

Vol 9 (5) ◽

pp. e026827 ◽

Cited By ~ 2

Author(s):

Heather deBoer ◽

Stephanie Cudd ◽

Matthew Andrews ◽

Ellie Leung ◽

Alana Petrie ◽

...

Keyword(s):

Focus Groups ◽

Care Setting ◽

Healthcare Professionals ◽

Hiv Care ◽

Healthcare Team ◽

People Living With Hiv ◽

Structured Interviews ◽

Interprofessional Care ◽

Specialty Hospital ◽

Living With Hiv

ObjectivesTo identify factors to consider when integrating physiotherapy (PT) into an interprofessional outpatient HIV care setting from the perspective of healthcare professionals and adults living with HIV.DesignWe conducted a qualitative descriptive study using semi-structured interviews (healthcare professionals) and focus groups (adults living with HIV). We asked participants their perspectives on barriers, facilitators and strategies to accessing and participating in outpatient PT, important characteristics physiotherapists should possess working in outpatient HIV care, content and structure of PT delivery, and programme evaluation.Recruitment and settingWe purposively sampled healthcare professionals based on their experiences working in interprofessional HIV care and recruited adults with HIV via word of mouth and in collaboration with an HIV-specialty hospital in Toronto, Canada. Interviews were conducted via Skype or in-person and focus groups were conducted in-person at the HIV-specialty hospital.Participants12 healthcare professionals with a median of 12 years experience in HIV care, and 13 adults living with HIV (11 men and 2 women) with a median age of 50 years and living with a median of 6 concurrent health conditions in addition to HIV.ResultsOverall impressions of PT in outpatient HIV care and factors to consider when implementing PT into an interprofessional care setting include: promoting the role of, and evidence for, PT in outpatient HIV care, structuring PT delivery to accommodate the unique needs and priorities of adults living with HIV, working collaboratively with a physiotherapist on the healthcare team and evaluating rehabilitation as a component of interprofessional care.ConclusionsMultiple factors exist for consideration when implementing PT into an interprofessional outpatient HIV care setting. Results provide insight for integrating timely and appropriate access to evidence-informed rehabilitation for people living with chronic and episodic illness, such as HIV.

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US Healthcare Systems, HIV Programs, and Coverage Policy Issues

Fundamentals of HIV Medicine 2019 ◽

10.1093/med/9780190942496.003.0049 ◽

2019 ◽

pp. 519-524

Author(s):

Anna Forbes ◽

Bruce J. Packett II

Keyword(s):

Insurance Coverage ◽

Healthcare Services ◽

Healthcare Systems ◽

Hiv Care ◽

Federal State ◽

People Living With Hiv ◽

Local Health ◽

Access To Treatment ◽

State And Local ◽

Living With Hiv

Upon completion of this chapter, the reader should be able to • Broadly understand the landscape of the US healthcare systems and payers as they relate to the provision of HIV care, treatment, prevention and medical coding. HIV-related healthcare services have historically been covered or provided by a patchwork of federal, state, and local programs, such as Medicare, Medicaid, the Ryan White Program, and state and local health programs. HIV/AIDS service organizations (H/ASOs) and private and charitable health organizations also provided services for HIV patients without coverage. These programs represent the long-standing pathways to insurance coverage, access to care, and access to treatment for people living with HIV (PLWH). Some of these programs also supply coverage for, or access to, medications that treat co-occurring conditions for PLWH....

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HIV patient access to healthcare services in post-austerity era in Greece

10.21203/rs.3.rs-31917/v1 ◽

2020 ◽

Author(s):

George Tsiakalakis ◽

Christina Golna ◽

Nikos Dedes ◽

Kostas Athanasakis ◽

Kyriakos Souliotis

Keyword(s):

Viral Load ◽

Economic Crisis ◽

Healthcare Services ◽

Access To Healthcare ◽

Hiv Care ◽

People Living With Hiv ◽

Patient Access ◽

Financial Status ◽

Living With Hiv ◽

Self Reporting Questionnaire

Abstract Background The ten-year economic crisis and the ensuing fiscal adjustment that Greece experienced between 2009 and 2018 has had a major impact on patient access to healthcare services and resulted in an increase in unmet population health needs. The present study assesses the impact of economic crisis and ensuing austerity on HIV patient access to healthcare services. Methods A cross-sectional study was carried out between February and April 2019 to assess barriers in access to HIV care faced by people living with HIV. 329 HIV-positive individuals participated in the study. An online, self-reporting questionnaire was developed on the basis of the HOPE studies tool (2,3,9,10) and adapted to the specific clinical and societal characteristics of HIV. Results 94.2% of respondents were male and 67.80% lived in Athens. Most of them were diagnosed with HIV 1 to 10 years ago. 37,40% of respondents reported obstacles in accessing HIV care over the past year, such as shortages in antiretroviral medicine, restricted opening hours of pharmacies and delays in booking an appointment with physicians. 24,30% reported they were not tested for viral load in the last six months and received a result. Individuals, who self-evaluate their financial status as very bad or bad, were more likely to be unaware of their viral load (55.60%) compared to individuals with better financial status (33,5%) (P<0.01). Only 33.3% of uninsured participants were aware of their viral load, and this figure rose to 63.30% (P <0.01) amongst insured participants. Conclusion Our study suggests that a critical proportion of HIV patients in Greece face significant barriers to receiving optimal HIV care, according to diagnostic and clinical guidelines. Financial and social insurance status are the main variables that impact on access, despite the comprehensive and universal NHS coverage of antiretroviral treatment and HIV monitoring. Reforming and integrating NHS service provision together with addressing social barriers and discrimination are critical to ensuring care is offered as per standards to all people living with HIV in Greece.

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Comparison of Clinical Outcomes of Persons Living With HIV by Enrollment Status in Washington, DC: Evaluation of a Large Longitudinal HIV Cohort Study (Preprint)

10.2196/preprints.16061 ◽

2019 ◽

Author(s):

Jenevieve Opoku ◽

Rupali K Doshi ◽

Amanda D Castel ◽

Ian Sorensen ◽

Michael Horberg ◽

...

Keyword(s):

Cohort Study ◽

Health Outcomes ◽

Odds Ratio ◽

Adjusted Odds Ratio ◽

Hiv Care ◽

Disease Stage ◽

People Living With Hiv ◽

Hiv Disease ◽

Persons Living With Hiv ◽

Living With Hiv

BACKGROUND HIV cohort studies have been used to assess health outcomes and inform the care and treatment of people living with HIV disease. However, there may be similarities and differences between cohort participants and the general population from which they are drawn. OBJECTIVE The objective of this analysis was to compare people living with HIV who have and have not been enrolled in the DC Cohort study and assess whether participants are a representative citywide sample of people living with HIV in the District of Columbia (DC). METHODS Data from the DC Health (DCDOH) HIV surveillance system and the DC Cohort study were matched to identify people living with HIV who were DC residents and had consented for the study by the end of 2016. Analysis was performed to identify differences between DC Cohort and noncohort participants by demographics and comorbid conditions. HIV disease stage, receipt of care, and viral suppression were evaluated. Adjusted logistic regression assessed correlates of health outcomes between the two groups. RESULTS There were 12,964 known people living with HIV in DC at the end of 2016, of which 40.1% were DC Cohort participants. Compared with nonparticipants, participants were less likely to be male (68.0% vs 74.9%, P<.001) but more likely to be black (82.3% vs 69.5%, P<.001) and have a heterosexual contact HIV transmission risk (30.3% vs 25.9%, P<.001). DC Cohort participants were also more likely to have ever been diagnosed with stage 3 HIV disease (59.6% vs 47.0%, P<.001), have a CD4 <200 cells/µL in 2017 (6.2% vs 4.6%, P<.001), be retained in any HIV care in 2017 (72.9% vs 59.4%, P<.001), and be virally suppressed in 2017. After adjusting for demographics, DC Cohort participants were significantly more likely to have received care in 2017 (adjusted odds ratio 1.8, 95% CI 1.70-2.00) and to have ever been virally suppressed (adjusted odds ratio 1.3, 95% CI 1.20-1.40). CONCLUSIONS These data have important implications when assessing the representativeness of patients enrolled in clinic-based cohorts compared with the DC-area general HIV population. As participants continue to enroll in the DC Cohort study, ongoing assessment of representativeness will be required.

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Depressive Symptoms, Gender, Disclosure, and HIV Care Stage Among People Living with HIV in Cameroon

AIDS and Behavior ◽

10.1007/s10461-021-03425-3 ◽

2021 ◽

Author(s):

Angela M. Parcesepe ◽

Molly Remch ◽

Anastase Dzudie ◽

Rogers Ajeh ◽

Denis Nash ◽

...

Keyword(s):

Depressive Symptoms ◽

Hiv Care ◽

People Living With Hiv ◽

Living With Hiv

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