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      Disability and Self-care Living Strategies Among Adults Living With HIV During the COVID-19 Pandemic

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          Abstract

          Background

          Events associated with the COVID-19 pandemic, such as physical distancing, closure of community services, postponement of health appointments, and loss of employment can lead to social isolation, financial uncertainty, and interruption of antiretroviral adherence, resulting in additional health-related challenges (disability) experienced among adults living with chronic illness such as HIV. ‘Living strategies’ is a concept derived from the perspective of people living with HIV, defined as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity. Our aim was to describe disability among adults living with HIV and self-care living strategies used during the COVID-19 pandemic.

          Methods

          Adults living with HIV in Toronto, Ontario, Canada, including some with pre-pandemic HIV Disability Questionnaire (HDQ) data, completed a cross-sectional web-based survey between June-August 2020. The survey included the HDQ and questions about self-care living strategy use during the pandemic. We compared disability (HDQ) scores prior to versus during the pandemic using paired t-tests. We reported the proportion of participants who engaged in various living strategies at least ‘a few times a week’ or ‘everyday’ during the pandemic.

          Results

          Of the 63 respondents, 84% were men, median age 57 years, and 62% lived alone. During the pandemic the greatest disability severity was in the uncertainty (median 30; Interquartile range (IQR): 16, 43) and mental-emotional (25; IQR: 14, 41) domains. Among the 51 participants with pre-pandemic data, HDQ severity scores were significantly greater (worse) during the pandemic (vs prior) in all domains. Greatest change from prior to during the pandemic was in the mental-emotional domain for presence (17.7; p<0.001), severity (11.4; p<0.001), and episodic nature (9.3; p<0.05) of disability. Most participants (>60%) reported engaging a ‘few times a week’ or ‘everyday’ in self-care strategies associated with maintaining sense of control and adopting positive attitudes and beliefs.

          Conclusions

          People living with HIV reported high levels of uncertainty and mental-emotional health challenges during the pandemic. Disability increased across all HDQ dimensions, with the greatest worsening in the mental-emotional health domain. Results provide an understanding of disability and self-care strategy use during the COVID-19 pandemic.

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          Most cited references57

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          The PHQ-8 as a measure of current depression in the general population.

          The eight-item Patient Health Questionnaire depression scale (PHQ-8) is established as a valid diagnostic and severity measure for depressive disorders in large clinical studies. Our objectives were to assess the PHQ-8 as a depression measure in a large, epidemiological population-based study, and to determine the comparability of depression as defined by the PHQ-8 diagnostic algorithm vs. a PHQ-8 cutpoint > or = 10. Random-digit-dialed telephone survey of 198,678 participants in the 2006 Behavioral Risk Factor Surveillance Survey (BRFSS), a population-based survey in the United States. Current depression as defined by either the DSM-IV based diagnostic algorithm (i.e., major depressive or other depressive disorder) of the PHQ-8 or a PHQ-8 score > or = 10; respondent sociodemographic characteristics; number of days of impairment in the past 30 days in multiple domains of health-related quality of life (HRQoL). The prevalence of current depression was similar whether defined by the diagnostic algorithm or a PHQ-8 score > or = 10 (9.1% vs. 8.6%). Depressed patients had substantially more days of impairment across multiple domains of HRQoL, and the impairment was nearly identical in depressed groups defined by either method. Of the 17,040 respondents with a PHQ-8 score > or = 10, major depressive disorder was present in 49.7%, other depressive disorder in 23.9%, depressed mood or anhedonia in another 22.8%, and no evidence of depressive disorder or depressive symptoms in only 3.5%. The PHQ-8 diagnostic algorithm rather than an independent structured psychiatric interview was used as the criterion standard. The PHQ-8 is a useful depression measure for population-based studies, and either its diagnostic algorithm or a cutpoint > or = 10 can be used for defining current depression.
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            COVID-19: the gendered impacts of the outbreak

            Policies and public health efforts have not addressed the gendered impacts of disease outbreaks. 1 The response to coronavirus disease 2019 (COVID-19) appears no different. We are not aware of any gender analysis of the outbreak by global health institutions or governments in affected countries or in preparedness phases. Recognising the extent to which disease outbreaks affect women and men differently is a fundamental step to understanding the primary and secondary effects of a health emergency on different individuals and communities, and for creating effective, equitable policies and interventions. Although sex-disaggregated data for COVID-19 show equal numbers of cases between men and women so far, there seem to be sex differences in mortality and vulnerability to the disease. 2 Emerging evidence suggests that more men than women are dying, potentially due to sex-based immunological 3 or gendered differences, such as patterns and prevalence of smoking. 4 However, current sex-disaggregated data are incomplete, cautioning against early assumptions. Simultaneously, data from the State Council Information Office in China suggest that more than 90% of health-care workers in Hubei province are women, emphasising the gendered nature of the health workforce and the risk that predominantly female health workers incur. 5 The closure of schools to control COVID-19 transmission in China, Hong Kong, Italy, South Korea, and beyond might have a differential effect on women, who provide most of the informal care within families, with the consequence of limiting their work and economic opportunities. Travel restrictions cause financial challenges and uncertainty for mostly female foreign domestic workers, many of whom travel in southeast Asia between the Philippines, Indonesia, Hong Kong, and Singapore. 6 Consideration is further needed of the gendered implications of quarantine, such as whether women and men's different physical, cultural, security, and sanitary needs are recognised. Experience from past outbreaks shows the importance of incorporating a gender analysis into preparedness and response efforts to improve the effectiveness of health interventions and promote gender and health equity goals. During the 2014–16 west African outbreak of Ebola virus disease, gendered norms meant that women were more likely to be infected by the virus, given their predominant roles as caregivers within families and as front-line health-care workers. 7 Women were less likely than men to have power in decision making around the outbreak, and their needs were largely unmet. 8 For example, resources for reproductive and sexual health were diverted to the emergency response, contributing to a rise in maternal mortality in a region with one of the highest rates in the world. 9 During the Zika virus outbreak, differences in power between men and women meant that women did not have autonomy over their sexual and reproductive lives, 10 which was compounded by their inadequate access to health care and insufficient financial resources to travel to hospitals for check-ups for their children, despite women doing most of the community vector control activities. 11 Given their front-line interaction with communities, it is concerning that women have not been fully incorporated into global health security surveillance, detection, and prevention mechanisms. Women's socially prescribed care roles typically place them in a prime position to identify trends at the local level that might signal the start of an outbreak and thus improve global health security. Although women should not be further burdened, particularly considering much of their labour during health crises goes underpaid or unpaid, incorporating women's voices and knowledge could be empowering and improve outbreak preparedness and response. Despite the WHO Executive Board recognising the need to include women in decision making for outbreak preparedness and response, 12 there is inadequate women's representation in national and global COVID-19 policy spaces, such as in the White House Coronavirus Task Force. 13 © 2020 Miguel Medina/Contributor/Getty Images 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active. If the response to disease outbreaks such as COVID-19 is to be effective and not reproduce or perpetuate gender and health inequities, it is important that gender norms, roles, and relations that influence women's and men's differential vulnerability to infection, exposure to pathogens, and treatment received, as well as how these may differ among different groups of women and men, are considered and addressed. We call on governments and global health institutions to consider the sex and gender effects of the COVID-19 outbreak, both direct and indirect, and conduct an analysis of the gendered impacts of the multiple outbreaks, incorporating the voices of women on the front line of the response to COVID-19 and of those most affected by the disease within preparedness and response policies or practices going forward.
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              The structure of coping.

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                Author and article information

                Contributors
                Journal
                Res Sq
                ResearchSquare
                Research Square
                American Journal Experts
                14 September 2021
                : rs.3.rs-868864
                Affiliations
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                University of Toronto
                Author notes

                Authors’ contributions: KKO led the planning and implementation of the study. KKO led the conceptualisation of the study objectives, development of the protocol, oversaw study implementation, analysis and interpretation, and drafted the manuscript. AMB, SCC, AMD, RA, and LA are members of the original community-based exercise study research and core analytical team, and were involved in the conceptualisation of the study design, development of the protocol, study implementation, analysis and interpretation and drafting the manuscript. PS, KME, CB, RH, DAB, JHV and SH are members of the research team, were involved in the conceptualization of the study design, development of the protocol, interpretation of study findings and reviewing the manuscript. All authors contributed to the review and revision, and approved the final manuscript.

                Author information
                http://orcid.org/0000-0002-1632-6537
                Article
                10.21203/rs.3.rs-868864
                10.21203/rs.3.rs-868864/v1
                8452102
                34545356
                217df899-eb74-4268-8036-e6f20b13f000

                This work is licensed under a Creative Commons Attribution 4.0 International License, which allows reusers to distribute, remix, adapt, and build upon the material in any medium or format, so long as attribution is given to the creator. The license allows for commercial use.

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                hiv/aids,covid-19 pandemic,web-based survey,disability
                hiv/aids, covid-19 pandemic, web-based survey, disability

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