Complexities of HIV Disclosure in Patients Newly Entering HIV Care: A Qualitative Analysis

Lambert, Crystal Chapman; Tarver, Will L.; Musoke, Pamela; Stringer, Kristi; Whitfield, Samantha; Turan, Bülent; Modi, Riddhi; Mugavero, Michael J.; Fredericksen, Rob J.; Weiser, Sheri D.; Johnson, Mallory O.; Turan, Janet M.

doi:10.1097/jnc.0000000000000127

Cited by 13 publications

(8 citation statements)

References 28 publications

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“…For many of the women, their primary source of support came from their partner; being in a relationship wherein women can be open and protected from the negative feelings related to an HIV diagnosis is particularly supportive. 8 Fear of rejection and being alone kept some women from disclosing their HIV status to their partners; furthermore, similar to findings from other studies, 8 , 43 , 44 this was an emotional burden, causing distress and creating restrictive relational boundaries.…”

Section: Social Supportsupporting

confidence: 75%

The experience of pregnancy among women living with HIV in Nordic countries: A qualitative narrative enquiry

Moseholm

Aho

Mellgren

et al. 2022

Womens Health (Lond Engl)

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Objective: The success of antiretroviral therapy has resulted in the normalization of pregnancy among women living with HIV and a very low risk of perinatal transmission of HIV. Despite these advances, women living with HIV still face complex medical and psychosocial issues during pregnancy. The purpose of this study is to describe experiences of pregnancy and the relevance of social support among women living with HIV in Nordic countries. Methods: This qualitative study examined data from pregnant women living with HIV from sites in Denmark, Sweden and Finland from 2019 to 2020. Data were collected in the third trimester via individual interviews using a hybrid, narrative/semistructured format. The transcribed interviews were analyzed using narrative thematic analysis. Results: In total, 31 women living with HIV were enrolled, of whom 61% originated from an African country and 29% from a Nordic country. The analysis generated four primary narrative themes: just a normal pregnancy, unique considerations and concerns, interactions with healthcare, and social support. Women living with HIV have a strong desire to have normal pregnancies and to be treated like any other pregnant woman. However, this normality is fragile, and being pregnant and living with HIV does come with unique considerations and concerns, such as fear of transmission, antiretroviral therapy, and the need for specialized care, which are fundamental to the women’s experiences. Interactions with healthcare providers and social support influence their experiences in both positive and negative ways. Conclusion: The findings emphasize a sense of normality in pregnancy among women living with HIV. However, pregnancy does come with unique considerations and concerns, which highly influence the women’s experience of pregnancy. Healthcare providers should focus on person-centered care, ensuring continuity and that women living with HIV do not feel discriminated against throughout their pregnancy.

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Section: Social Supportsupporting

confidence: 75%

The experience of pregnancy among women living with HIV in Nordic countries: A qualitative narrative enquiry

Moseholm

Aho

Mellgren

et al. 2022

Womens Health (Lond Engl)

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“…Concerns about confidentiality may have influenced caregivers’ decision about having their child screened. Despite decades of work increasing HIV information in the facilities and communities, stigma remains a prominent barrier to the disclosure of one’s status 20 21. It is well documented that confidentiality is a major concern among people living with HIV 22 23.…”

Section: Discussionmentioning

confidence: 99%

Acceptability and usability of a paediatric HIV screening tool in high-volume outpatient settings in Malawi, perspectives from caregivers and healthcare workers

Katirayi

Maphosa²,

Kudiabor³

et al. 2023

bmjpo

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BackgroundUsing an HIV pretest screening tool to identify children most at risk for HIV infection may be a more efficient and cost-effective approach to identify children living with HIV in resource-limited settings. These tools seek to reduce overtesting of children by increasing the positive predictive value while ensuring a high negative predictive value for those screened for HIV.MethodsThis qualitative study in Malawi evaluated acceptability and usability of a modified version of the Zimbabwe HIV screening tool to identify children aged 2–14 years most-at-risk. The tool included additional questions about previous hospitalisations due to malaria and prior documented diagnoses. Sixteen interviews were conducted with expert clients (ECs), trained peer-supporters, which administered the screening tool and 12 interviews with biological and non-biological caregivers of screened children. All interviews were audiorecorded, transcribed and translated. Transcripts were analysed manually using a short-answer analysis, compiling responses for each question by study participant group. Summary documents were generated, identifying common and outlier perspectives.ResultsThe HIV paediatric screening tool was generally accepted by caregivers and ECs, with both groups seeing the benefit of the tool and promoting its use. The ECs who were primarily responsible for implementing the tool initially struggled with acceptance of the tool but started to accept it after additional training and mentorship was provided. Overall, caregivers accepted having their children tested for HIV, although non-biological caregivers expressed hesitancy in giving consent for HIV testing. ECs reported challenges with the ability for non-biological caregivers to answer some questions.ConclusionThis study found general acceptance of paediatric screening tools in children in Malawi and identified some minor challenges that raise important considerations for tool implementation. These include the need for a thorough orientation of the tools for the healthcare workers and caregivers, appropriate space at the facility, and adequate staffing and commodities.

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“…HIV disclosure was related to improved social support, and the confidence to disclose to additional individuals. However, stigma was a barrier to HIV disclosure because patients feared that they would not be accepted or that others would be told about their HIV status (Chapman Lambert et al, 2020). The findings on HIV stigma corroborate what was found for the secrecy/not planning to disclose theme in the current study because patients had anticipated stigma and some had experienced stigma firsthand.…”

Section: Discussionmentioning

confidence: 99%

“…Future research should examine the feasibility of implementing HIV disclosure interventions among older CSA survivors. Indeed, disclosure interventions may increase social support and retention in HIV care (Chapman Lambert et al, 2020), which may improve HIV treatment outcomes and overall quality of life.…”

Section: Discussionmentioning

confidence: 99%

“Keep It to Yourself”: A Qualitative Study of HIV Disclosure Perspectives Among Older Adults Living With HIV in South Carolina Who Are Childhood Sexual Abuse Survivors

Brown¹,

Nkwonta²,

James³

et al. 2022

J Assoc Nurses AIDS Care

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Complexities of HIV Disclosure in Patients Newly Entering HIV Care: A Qualitative Analysis

Cited by 13 publications

References 28 publications

The experience of pregnancy among women living with HIV in Nordic countries: A qualitative narrative enquiry

The experience of pregnancy among women living with HIV in Nordic countries: A qualitative narrative enquiry

Acceptability and usability of a paediatric HIV screening tool in high-volume outpatient settings in Malawi, perspectives from caregivers and healthcare workers

“Keep It to Yourself”: A Qualitative Study of HIV Disclosure Perspectives Among Older Adults Living With HIV in South Carolina Who Are Childhood Sexual Abuse Survivors

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