Disclosure as a Positive Resource: The Lived Experiences of HIV-Positive Adolescents in Botswana

Author(s):  
Vivian Midtbø ◽  
Marguerite Daniel
Author(s):  
Mark Davis ◽  
Davina Lohm

Chapter 6 explores the narratives of people who, due to vulnerabilities associated with their health status, including severe respiratory illness and HIV-positive serostatus, and because of coincident pregnancy, had to respond to the pandemic to protect themselves and unborn children. This chapter, therefore, addresses the importance of biography for understanding the social impact of pandemics. It shows how pandemics as historical events intersect with biographies and, from the point of view of individuals, cannot be meaningfully separated. This temporal intersectionality of pandemics and lived experiences is particularly well illuminated by a narrative approach. A feature of this chapter, too, is a focus on invisibility, that is, the ways in which being at risk was invisible to the “healthy” majority.


2007 ◽  
Vol 28 (8) ◽  
pp. 731-744 ◽  
Author(s):  
Ratchneewan Ross ◽  
Wilaiphan Sawatphanit ◽  
Claire Burke Draucker ◽  
Tatirat Suwansujarid

2018 ◽  
Vol 15 (2) ◽  
pp. 55-65
Author(s):  
Gayle Clifford ◽  
Gill Craig ◽  
Christine McCourt

Abstract Existing guidelines (WHO, 2011) advise caretakers and professionals to disclose children’s and their caretakers’ HIV status to children, despite a lack of evidence concerning the potential implications in resource-constrained settings. Our research uses feminist Interpretative Phenomenological Analysis (IPA) to explore the experiences of HIV positive mothers in Kingston, Jamaica, focusing on their lived experiences of talking to their children about maternal HIV. This paper will focus on the concept of mothering at a distance and how this presents additional challenges for HIV positive mothers who are trying to establish emotional closeness in relation to talking to their children about their HIV. Using Hochschild’s concept of emotion work and examples from the interviews, we highlight the difficult contexts informing women’s decisions when negotiating discussions about their HIV. Women may choose full, partial or differential disclosure or children may be told their mother’s HIV status by others. Disclosure policy, we argue, reflects Anglo-Northern constructions of the family and parenting which may not adequately reflect the experiences of poor urban mothers in low and middle income countries. We argue that policy needs to recognise culturally-specific family formations, which, in Jamaica includes absent fathers, mothering at a distance and mothering non-biological children. This article reflects on the experiences of an under-researched group, poor urban Jamaican women practising mothering at a distance, using a novel methodological approach (IPA) to bring into relief unique insights into their lived experiences and will contribute to the global policy and research literature on HIV disclosure.


2015 ◽  
Vol 8 (1) ◽  
pp. 34-47 ◽  
Author(s):  
G. Gachanja

Limited published data exists on how HIV-positive parents perform disclosure to all their children. A couple’s HIV disclosure experience to all their children is presented. They participated in a larger study conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process. Each underwent individualized in-depth semi-structured interviews. Interviews were transcribed and transferred into NVivo 8 for analysis using the Van Kaam method. Three themes emerged including HIV testing, full disclosure delivery accompanied by marital disharmony, and post-disclosure psychological effects on the family. Marital disharmony and non-involvement of the father caused the mother to fully disclose their illnesses to their four oldest children. All children were affected by disclosure, one had a delayed emotional outburst, and another was still angry and withdrawn years later. HIV-positive parents with poor relationships within the families need intense counseling and support pre, during, and post-disclosure to improve outcomes. 


2008 ◽  
Author(s):  
Melissa Santos ◽  
Dina O'Brien ◽  
Sheila Bunting

2018 ◽  
Vol 1 (1) ◽  
pp. 9-20
Author(s):  
Marie Lauren Michelle Hortillas ◽  
Lisa Anna Gayoles

The present study aimed to investigate the lived experiences of beingHIV positive; to describe common themes of experiences of being HIVpositive; and to analyze the meaning of experiences of being HIV positive.The participants of this study were five HIV-positive men under the careof the Department of Health (DOH) Region VI in Iloilo City. Specifically,they belonged to the United Western Visayas Incorporated (UWVI), acommunity-based group of people living with HIV (PLHIV) based in Iloiloand operating in Panay and Guimaras areas. Narrative writing encouragedthe participants to rummage through emotions tied to being HIV positive.This gave them the chance to revisit strong feelings without divulging theiridentities, thus protecting their anonymity. Eight main textural themesemerged from the lived experiences of these men, namely: disclosureof HIV-positive status; stigma and discrimination attached to HIV; socialsupport from family, friends, and others; depression accompanying thediagnosis; the physical symptoms experienced during seroconversion;antiretroviral therapy after the diagnosis; and HIV advocacy with UWVI.These HIV positive men have metamorphosed, from the acceptanceof their HIV positive status to reinventing their new reality and findingpurpose through their HIV advocacy. The findings suggest implications forsupportive counseling to provide empathy, support and encouragement,and developing specific coping strategies with PLHIV.


2014 ◽  
Vol 34 (4) ◽  
Author(s):  
Debanuj DasGupta

<span>In this auto-ethnographic essay I shed light upon processes of racialiazation and sexualization which work to construct the figure of the disabled, diseased, alien. The paper argues disability based immigration policies, along with neoliberal notions of productivity and enterprise operate as technologies of power, excluding queer HiV positive migrant subjects from the gates of the US nation-state. I shed light upon HIV based immigration policies, disability and sexuality rights activism, pre and post 9/11 US national security practices by retracing lived experiences of mine from Kolkata, India and post 9/11 New York City. The narrative journeys to spaces such as HIV clinics, S&amp;M chambers, and hospital rooms in hopes of understanding collective claims to life being made by those occupying the interstitial shadow spaces between nation-states, perverse/ normal, ability/disability, and ultimately life/death.</span><br />


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. This study was conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children underwent semistructured in-depth interviews. Data was analyzed using the Van Kaam method in NVivo 8. Seven themes emerged that spanned the disclosure process. Presented here is data on the theme about how participants recommend full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at five years with full disclosure delivered at 10 years when the child was capable of understanding the illness; or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important disclosure considerations include the parent’s and/or child’s health statuses, the number of infected persons’ illnesses to be disclosed to the child, the child’s maturity and understanding level, addressing important life events (e.g., taking a national school examination), and the person best suited to deliver full disclosure to the child. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs.


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