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The role of carers in assisting OPWH with receiving HIV and non-HIV care during COVID-19 pandemic in Ukraine

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BACKGROUND: To understand how older people with HIV (OPWH, defined as '¥50 years) cope during the Covid-19 pandemic when they need support with activities of daily living and HIV and non-HIV care, we explored experiences of both OPWH and their carers living in Kyiv.

METHODS: In April-May 2021, we conducted 22 qualitative phone interviews with 11 pairs of OPWH and their carers. HIV psychologist at Kyiv AIDS center, referred eligible OPWH to the researcher. Our purposive sample included diverse OPWH by gender, sexuality, comorbidities (e.g., substance use disorder (SUD)), and their carers type. Recruited OPWH referred us to the person they considered their main carer (family member, friend or healthcare professional). Participants within pairs were interviewed separately, with questions for OPWH mirroring questions for their carers. Interviews were audio-recorded, transcribed verbatim, and analyzed for themes using NVivo software.
RESULTS: Among 11 pairs, there were mother-daughter (2), mother-son (1), sisters (1), girlfriends (1), heterosexual married couple (1), grandmother'grandson (1), and OPWH patient (including two gay men) and social worker (4). Age ranged from 50 to 77 for OPWH and from 25 to 72 for carers. Care relationship averaged 8 years, ranging from 1 to 17 years. Four key themes were highlighted in both OPWH and carers interviews:
1) The fear of HIV status disclosure stems from HIV identity rejection and restricts OPWH's intimate relationships and access to healthcare for comorbidities, including Covid-19 infection.
2) OPWH are primarily seeking companionship in carers with psychological support more important than any other help.
3) Burned-out relatives resented OPWH's HIV status when OPWH needed more assistance with HIV and SUD care during Covid-19 pandemic. Therefore, when carers also received support from OPWH they undervalued it.
4) Considering HIV a 'shameful' diagnosis, OPWH often do not disclose it to children, instead looking for help in friends or social workers.
CONCLUSIONS: There is a need for interventions to help OPWH accept their HIV status and, make informed decisions about disclosing it to the closest people to continue living fully. Interventions should be bilateral, simultaneously focusing on both OPWH and their carers to prevent burnout.