When biographical disruption meets HIV exceptionalism: Reshaping illness identities in the shadow of criminalization

2021 ◽  
Author(s):  
Michael Orsini ◽  
Jennifer M. Kilty
Keyword(s):  
Biographical Disruption ◽  
Hiv Exceptionalism

scholarly journals “Life Is Taking Me Where I Need to Go”: Biographical Disruption and New Arrangements in the Lives of Female Family Carers of Children with Congenital Zika Syndrome in Pernambuco, Brazil

Viruses ◽  
2020 ◽  
Vol 12 (12) ◽  
pp. 1410
Author(s):  
Ana Paula Lopes de Melo ◽  
Tereza Lyra ◽  
Thália Velho Barreto de Araújo ◽  
Maria do Socorro Veloso de Albuquerque ◽  
Sandra Valongueiro ◽  
...  
Keyword(s):  
Division Of Labour ◽  
Chronic Illnesses ◽  
Family Carers ◽  
Structured Interviews ◽  
Biographical Disruption ◽  
Gender Oppression ◽  
The Social ◽  
Congenital Zika Syndrome ◽  
Social Vulnerabilities ◽  
Inclusive Society

The congenital Zika syndrome (CZS) epidemic in Brazil turned the spotlight on many other factors beyond illness, such as poverty, gender, and inequalities in health care. Women were the emblematic subjects in this study, not only because Zika virus is a vertical transmission disease, but also because women—in Brazil and elsewhere—typically represent the primary carers of children. This is a qualitative analytic study using semi-structured interviews with 23 female family carers of children with CZS in Brazil. Through the concept of biographical disruption, we analysed some of the social impacts experienced by women involved in caring for affected children. We identified that the arrival of a child with disabilities resulted in biographical disruption similar to that experienced by people with chronic illnesses. Social support networks were configured through an alliance between women from different generations, revealing solidarity networks, but also highlighting the absence of the state in tackling these social vulnerabilities. Tracing the pathways of these biographical narratives enables us to understand how women have acted to defend the value of their disabled children in a society structured on the model of body normativity and inequality. These results may provide clues to a more inclusive society, which confronts systems of gender oppression and the sexual division of labour focused on women.

Shadow of HIV exceptionalism 40 years later

2021 ◽  
pp. medethics-2020-106908
Author(s):  
Michela Blain ◽  
Stephaun E Wallace ◽  
Courtney Tuegel
Keyword(s):  
Implicit Bias ◽  
Hiv Treatment ◽  
Hiv Care ◽  
Medical Community ◽  
Aids Epidemic ◽  
Treatment And Prevention ◽  
The Social ◽  
Hiv Exceptionalism ◽  
Medical Advances

During the AIDS epidemic in the 1980s, it was crucial that providers take steps to protect patients by managing HIV with the perspective of ‘HIV exceptionalism’. However, in 2020, the social and historical barriers erected by this concept, as demonstrated in this patient’s case, are considerably impeding progress to end the epidemic. With significant medical advances in HIV treatment and prevention, the policies informed by HIV exceptionalism now paradoxically perpetuate stigma and inequities, particularly for people of colour. To improve overall HIV care, the medical community must move past HIV exceptionalism by liberalising diagnostics, instituting clinician implicit bias training and advocating to fully decriminalise HIV non-disclosure.

scholarly journals Loneliness as a Biographical Disruption—Theoretical Implications for Understanding Changes in Loneliness

2020 ◽  
Vol 75 (9) ◽  
pp. 2029-2039
Author(s):  
Deborah J Morgan ◽  
Vanessa Burholt
Keyword(s):  
Risk Factors ◽  
Social Network ◽  
Older People ◽  
Later Life ◽  
Well Being ◽  
Narrative Interviews ◽  
Biographical Disruption ◽  
Stability And Change ◽  
Life Study ◽  
Over Time

Abstract Objectives While a great deal is known about the risk factors that increase vulnerability to loneliness in later life, little research has explored stability and change in levels of loneliness. Methods Narrative interviews were conducted with 11 participants who were identified as being lonely during Wave 1 of the Maintaining Function and Well-being in Later Life Study Wales (CFAS Wales). The interviews were used to explore stability and change in levels of loneliness from the perspective of older people themselves. The interviews focused on participant’s perspectives of the events that triggered loneliness, stability, and change in levels of loneliness over time as well as participant’s responses to loneliness. Results The findings show that participants experienced losses and loneliness as biographical disruption. How participants and their wider social network responded to these losses had implications for the individual’s trajectory through loneliness. Discussion Drawing on a biographical lens, the study reframed the events that triggered loneliness as disruptive events. This article discusses the utility of biographical disruption in understanding stability and change in loneliness. The findings suggest how drawing on valued identities may help lonely adults transition out of loneliness.

scholarly journals Prioritizing Illness: Lessons in Self-Managing Multiple Chronic Diseases

2009 ◽  
Vol 34 (4) ◽  
pp. 983-1002 ◽  
Author(s):  
Sally Lindsay
Keyword(s):  
Chronic Illness ◽  
Chronic Conditions ◽  
Chronic Disease Management ◽  
Management Strategies ◽  
Chronic Illnesses ◽  
Multiple Chronic Conditions ◽  
Illness Trajectory ◽  
Biographical Disruption ◽  
Multiple Chronic Diseases ◽  
Multiple Conditions

Chronic disease management strategies are largely based on single disease models, yet patients often need to manage multiple conditions. This study uses the concepts of ‘chronic illness trajectory’ and ‘biographical disruption’ to examine how patients self-manage multiple chronic conditions and especially how they prioritize which condition(s) will receive the greatest attention. Fifty-three people with multiple chronic illnesses participated in one of 6 focus groups. The results suggest that people who were disrupted tended to be younger than 60, lived on their own, cared for other family members, or other barriers. Many participants anticipated subsequent illnesses given their age and prior experience with illness. In order to cope with their multiple illnesses most felt it was necessary to prioritize their ‘main’ illness. Their reasons for prioritizing a particular illness included: (1) the unpredictable nature of the disease; (2) the condition could not be controlled by tablets; and (3) the condition tended to set off the rest of their health problems. Social context played a key role in shaping patients’ biography and chronic illness trajectory.

‘My relationships have changed because I’ve changed’: biographical disruption, personal relationships and the formation of an early menopausal subjectivity

2020 ◽  
Vol 42 (7) ◽  
pp. 1516-1531
Author(s):  
Kate Johnston‐Ataata ◽  
Jacinthe Flore ◽  
Renata Kokanović ◽  
Martha Hickey ◽  
Helena Teede ◽  
...  
Keyword(s):  
Personal Relationships ◽  
Biographical Disruption

Biographical disruption of injured workers in chronic pain

2011 ◽  
Vol 33 (22-23) ◽  
pp. 2372-2380 ◽  
Author(s):  
Sophie Soklaridis ◽  
Carrie Cartmill ◽  
D. Cassidy
Keyword(s):  
Chronic Pain ◽  
Injured Workers ◽  
Biographical Disruption

Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV

2001 ◽  
Vol 29 (2) ◽  
pp. 141-148 ◽  
Author(s):  
Lainie Friedman Ross
Keyword(s):  
Hiv Testing ◽  
Paradigm Shift ◽  
Test Results ◽  
Public Officials ◽  
Consent Forms ◽  
Sexually Transmitted ◽  
Anonymous Testing ◽  
Hiv Test ◽  
Immunodeficiency Virus ◽  
Hiv Exceptionalism

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus (HIV) different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk.

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