‘Are We Not Human?’ Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services

Parsons, Janet; Bond, Virginia; Nixon, Stephanie

doi:10.1371/journal.pone.0127392

Cited by 42 publications

(43 citation statements)

References 49 publications

(81 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The barriers discussed in this paper mirror findings from other studies on persons with disabilities in sub-Saharan Africa [2,4,9,11,13–18]. However, this study emphasizes the struggles faced specifically by persons with disabilities living with HIV in accessing HIV testing and obtaining HIV care and treatment services, which may ultimately have a negative impact on HIV treatment outcomes.…”

Section: Discussionsupporting

confidence: 73%

“…While research on the challenges encountered by persons with disabilities in accessing health services in sub-Saharan Africa is growing [2,4,9,11,13–18], crucial practical information on their specific challenges and facilitators remains limited, particularly based on data collection directly from persons with disabilities living with HIV [15,18]. Understanding the unique experiences of persons with disabilities living with HIV from their own perspectives and experiences in accessing HIV services will help programmes to address their specific needs.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia

Tun

Okal

Schenk

et al. 2016

Journal of the International AIDS Society

View full text Add to dashboard Cite

IntroductionKnowledge about experiences in accessing HIV services among persons with disabilities who are living with HIV in sub-Saharan Africa is limited. Although HIV transmission among persons with disabilities in Africa is increasingly acknowledged, there is a need to bring to life the experiences and voices from persons with disabilities living with HIV to raise awareness of programme implementers and policy makers about their barriers in accessing HIV services. This paper explores how the barriers faced by persons with disabilities living with HIV impede their ability to access HIV-related services and manage their disease.MethodsWe conducted focus group discussions with 76 persons (41 females; 35 males) with physical, visual and/or hearing impairments who were living with HIV in Ghana, Uganda and Zambia (2012–2013). We explored challenges and facilitators at different levels (individual, psychosocial and structural) of access to HIV services. Transcripts were analyzed using a framework analysis approach.ResultsPersons with disabilities living with HIV encountered a wide variety of challenges in accessing HIV services. Delays in testing for HIV were common, with most waiting until they were sick to be tested. Reasons for delayed testing included challenges in getting to the health facilities, lack of information about HIV and testing, and HIV- and disability-related stigma. Barriers to HIV-related services, including care and treatment, at health facilities included lack of disability-friendly educational materials and sign interpreters, stigmatizing treatment by providers and other patients, lack of skills to provide tailored services to persons with disabilities living with HIV and physically inaccessible infrastructure, all of which make it extremely difficult for persons with disabilities to initiate and adhere to HIV treatment. Accessibility challenges were greater for women than men due to gender-related roles. Challenges were similar across the three countries. Favourable experiences in accessing HIV services were reported in Uganda and Zambia, where disability-tailored services were offered by non-governmental organizations and government facilities (Uganda only).ConclusionsPersons with disabilities living with HIV encounter many challenges in accessing HIV testing and continued care and treatment services. Changes are needed at every level to ensure accessibility of HIV services for persons with disabilities.

show abstract

Section: Discussionsupporting

confidence: 73%

Section: Introductionmentioning

confidence: 99%

Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia

Tun

Okal

Schenk

et al. 2016

Journal of the International AIDS Society

View full text Add to dashboard Cite

show abstract

“…Population distributions, family and household compositions, and people's sense of belonging and social stability in southern Africa have been shaped by tumultuous, interwoven, and continuing large‐scale historical disruptions at multiple levels of political and social geography . In contemporary Zambia, the country's geographic position – sharing national borders with eight other countries – and its role as a hub for regional trade routes have led to particularly high patterns of mobility.…”

Section: Introductionmentioning

confidence: 99%

Households, fluidity, and HIV service delivery in Zambia and South Africa – an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial

et al. 2018

View full text Add to dashboard Cite

IntroductionPopulation distributions, family and household compositions, and people's sense of belonging and social stability in southern Africa have been shaped by tumultuous, continuing large‐scale historical disruptions. As a result, many people experience high levels of geographic and social fluidity, which intersect with individual and population‐level migration patterns. We describe the complexities of household fluidity and HIV service access in South Africa and Zambia to explore implications for health systems and service delivery in contexts of high household fluidity.MethodsHPTN 071 (PopART) is a three‐arm cluster randomized controlled trial implemented in 21 peri‐urban study communities in Zambia and South Africa between 2013 and 2018. A qualitative cohort nested in the trial included 148 purposively sampled households. Data collection was informed by ethnographic and participatory research principles. The analysis process was reflexive and findings are descriptive narrative summaries of emergent ideas.ResultsHouseholds in southern Africa are extremely fluid, with people having a tenuous sense of security in their social networks. This fluidity intersects with high individual and population mobility. To characterize fluidity, we describe thematic patterns of household membership and residence. We also identify reasons people give for moving around and shifting social ties, including economic survival, fostering interpersonal relationships, participating in cultural, traditional, religious, or familial gatherings, being institutionalized, and maintaining patterns of substance use. High fluidity disrupted HIV service access for some participants. Despite these challenges, many participants were able to regularly access HIV testing services and participants living with HIV were especially resourceful in maintaining continuity of antiretroviral therapy (ART). We identify three key features of health service interactions that facilitated care continuity: disclosure to family members, understanding attitudes among health services staff including flexibility to accommodate clients’ transient pressures, and participants’ agency in ART‐related decisions.ConclusionsChoices made to manage one's experiential sense of household fluidity are intentional responses to livelihood and social support constraints. To enhance retention in care for people living with HIV, policy makers and service providers should focus on creating responsive, flexible health service delivery systems designed to accommodate many shifts in client circumstances.

show abstract

“…These realities cut across a wider audience when it comes to selling their goods and merchandise. This is why many are reported not to seek care despite the readily available drugs in the health care service centres (Judgeo & Moalusi, 2014;Parsons, Bond, & Nixon, 2015). They are often faced with issues of difficulty in disclosure to their peers and families due to the widespread stigma (Abubakar et al, 2016;Pantelic, Shenderovich, Cluver, & Boyes, 2015;Poindexter, Henrickson, Fouché, Brown, & Scott, 2013;Too, Watson, Harding, & Seymour, 2015).…”

Section: Discussionmentioning

confidence: 99%

Access to HIV Care and Resilience in a Long Term Conflict Setting. A Pilot Qualitative Assessment of the Experiences of Living with Diagnosed HIV in Mogadishu, Somali

Kulane¹,

Owuor²,

Sematimba³

et al. 2017

Preprint

View full text Add to dashboard Cite

Background: Human Immnodeficiency virus (HIV) continues to take a heavy toll on the lives of many people with worst impact on health and wellbeing for the affected individuals in fragile states. The HIV situation in Somalia is not clearly known and experiences of the people living with HIV in this war-torn region unexpressed. This pilot qualitative study sought to explore the experiences of people living with diagnosed HIV in Mogadishu and their resilience in access to care and social support. Method: Face-to-face in-depth interviews were conducted in Somali in May 2013 among patients who were receiving Antiretroviral therapy (ART) from the HIV clinic in Mogadishu. Participants were recruited through drug dispensers at the HIV clinic in Benader Hospital. These were tape recorded, transcribed and translated for content analysis. Results: Three women and four men who were living with HIV shared the following narratives. Their perception was that they had either got HIV from their spouces or through health care contamination. They were very knowledgable about the realities of HIV, how the medication works, nutritional requirements and drug adherence. They were always willing to go an extra mile to secure a good life for themselves. However the external HIV stigma impacted their access to care. They faced challenges in their homes and at work which compelled them to seek support from non-governmental organisations (NGOs) or close family members. This stigma often affected their disclosure to the wider community due to the uncertainity of the repercussions, leading to a life of extreme loneliness and financial difficulties. The participants’ coping mechansms included living together and starting their own NGO for support with very strong optimism about their prognosis. Conclusions: The people living with diagnosed HIV in Mogadishu are highly knowledgeable about HIV transmission, the realities of living with diagnosed HIV infection and efficacy of HIV treatment. Our small sample suggests adequate access to ART through NGOs. However, widespread HIV stigma limits HIV status disclosure to the families and communities which creates a risk of self isolation and ill health. But affected individuals have developed resilient mechanisms of managing the risks. They strive to remain employed for economic security, adhere to HIV treatment, engage in support groups and maintain utmost optimism about their prognosis.

show abstract

‘Are We Not Human?’ Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services

Cited by 42 publications

References 49 publications

Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia

Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia

Households, fluidity, and HIV service delivery in Zambia and South Africa – an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial

Access to HIV Care and Resilience in a Long Term Conflict Setting. A Pilot Qualitative Assessment of the Experiences of Living with Diagnosed HIV in Mogadishu, Somali

Contact Info

Product

Resources

About