key: cord-0989866-xe92ko2m authors: O’Brien, Kelly K; Bayoumi, Ahmed M; Carusone, Soo Chan; Davis, Aileen M; Aubry, Rachel; Avery, Lisa; Solomon, Patty; Erlandson, Kristine M; Bergin, Colm; Harding, Richard; Brown, Darren A; Vera, Jaime H; Hanna, Steven title: Disability and Self-care Living Strategies Among Adults Living With HIV During the COVID-19 Pandemic date: 2021-09-14 journal: Res Sq DOI: 10.21203/rs.3.rs-868864/v1 sha: 961b0f9a5277e09450757bbb78040afec63a3651 doc_id: 989866 cord_uid: xe92ko2m 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. Loading [MathJax]/jax/output/CommonHTML/jax.js Due to measures implemented to slow the transmission of COVID-19, adults with HIV need to employ independent self-care living strategies in order to deal with uncertainty and the physical, social and mental health challenges of the pandemic (9, 13) . Living strategies is a term that may be considered analogous to coping in the context of HIV. The concept of 'living strategies' was derived from the perspective of people living with HIV as a component of the Episodic Disability Framework, de ned as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity (7) . Examples of living strategies include: seeking social interaction with others, maintaining a sense of control over life, blocking the event (i.e., the COVID-19 pandemic) out of the mind, and maintaining positive attitudes and beliefs (7) . While most strategies have positive in uences on health, some strategies may have negative health consequences, such as isolation (associated with physical distancing measures), or engaging in substance use. Understanding how these living strategies are used among adults living with HIV during this time can help to identify ways in which individuals and health care providers can promote timely and appropriate self-management approaches for enhancing health and well-being during a pandemic or other major events (17, 18) . Our aim was to describe disability experienced by adults with HIV and self-care living strategies used during the COVID-19 pandemic. Our primary objective was to describe the dimensions of disability experienced among adults with HIV during the pandemic and identify change in disability compared with prior to the pandemic. Our secondary objectives were to describe self-care living strategies used; and examine associations between disability and the frequency of living strategies use; and to identify changes in mental health and mastery compared with prior to the pandemic. We conducted a cross-sectional web-based survey using EQUATOR guidelines for web-based surveys (19, 20) . This research was approved by the HIV/AIDS Research Ethics Board at the University of Toronto (Protocol #32910). Loading [MathJax]/jax/output/CommonHTML/jax.js Setting In response to the World Health Organization's declared outbreak of the novel coronavirus disease (COVID-19) the province of Ontario, Canada declared a state of emergency on March 17, 2020 . To slow the transmission of SARS-CoV-2, the City of Toronto closed all shared, public or private recreational amenities and non-essential businesses, including community service organizations and health and tness centres, and issued a stay-at-home order. Participants Individuals were eligible if they self-identi ed as an adult ≥ 18 years living with HIV living in Toronto, Canada. We emailed adults with HIV who participated in a community-based exercise (CBE) intervention study (21) and agreed to be contacted about future research. Using a modi ed Dillman Tailored Design Method, we emailed potential participants an initial invitation and link to electronically administer, self-reported questionnaires using Qualtrics (22, 23) . The email outlined the study purpose, eligibility, and involvement. Interested individuals opened a personalised Qualtrics link, rst consented to participate by clicking yes to 'I agree to participate in this research study', and were the guided to the survey. We followed up with reminder emails at one, two and four weeks after the initial invitation. Participants received a $30 (Canadian dollar) electronic gift card for completing the survey. To increase our sample size, we asked participants to share details of the study with others living with HIV, who were asked to contact the research coordinator to review eligibility prior to enrolling in the study and receiving a personalized link to the survey. The survey included questionnaires capturing disability, self-care living strategies use, contextual factors (mental health, mastery), and COVID-19, health and demographic characteristics of participants. For participants recruited from the exercise study, we used HDQ data collected during that study (prior to the pandemic) to assess change in disability. We administered the HIV Disability Questionnaire (HDQ), to capture the presence, severity and episodic nature of disability experienced by adults aging with HIV across six domains including challenges with physical, mental-emotional, and cognitive health, day-to-day activities, social inclusion and uncertainty or worrying about the future (24, 25) . The HDQ has demonstrated validity, reliability and sensibility for use with adults living with HIV (26) (27) (28) (29) (30) blocking the COVID-19 pandemic out of the mind (7 items), and a section on seeking social interactions with others (10 items). For items 1-41, participants were asked how often they used a given living strategy in the past month ranging from 1 "None of the time (e.g. not at all)" to 4 "All of the time (e.g. every day)". For the seeking social interaction items (Item 42-51), participants were asked how often they used a given social strategy in the past month ranging from 1 "None of the time (e.g. not at all)" to 5 "All of the time (e.g. every day)" or not applicable. For each, we asked whether the frequency of strategy use changed since the onset of the COVID-19 pandemic: increased (more frequent), decreased (less frequent) or no change. We administered a demographic and COVID-19 questionnaire to capture personal characteristics (age, sex, gender, living status, income, employment status), HIV-related information (viral load, years since diagnosis, concurrent health conditions, self-reported health), and impact of the COVID-19 pandemic on access to health care services, supports, experiences and lifestyle changes. Secondary Measures: Mental Health: The Patient Health Questionnaire (PHQ8) is an 8-item measure of depression severity (32) and possesses construct validity and test-retest reliability in adults with HIV (33, 34) . Mastery: The Pearlin Mastery Scale includes 7 items that assess sense of personal control over life forces or outcomes (35). Each item in the scale is measured using a Likert scale with 4 response categories, and higher summary scores indicate greater levels of mastery. We downloaded responses from Qualtrics for analysis using R (analytic analyses) (36). We calculated the view, participation and completion rates of survey responses (19) . We calculated medians (IQR) and frequencies (%) to describe demographic characteristics of the sample. We conducted a cross sectional analysis with all participants who completed the web-based survey during the pandemic, and longitudinal analysis (prior to versus during the pandemic) among participants with pre-pandemic disability (HDQ), mental health (PHQ8) and mastery (mastery scale) data. We calculated medians and interquartile ranges (IQR) for HDQ presence, severity and episodic domain scores from all survey respondents. For participants recruited from the exercise study, we used paired ttests to determine if their disability changed prior to versus during the pandemic. We used each participant's median pre-pandemic HDQ score across all possible 12-time points in our previously 22 Loading [MathJax]/jax/output/CommonHTML/jax.js month exercise study (21) as the pre-pandemic score, and the current HDQ score from the web-based survey as the during pandemic score. We reported the frequency (%) of participants who engaged in each strategy 'a few times a week' or 'everyday' and change in strategy use (increase / decrease / no change). We conceptualized 37 of the items as having positive in uences on health, 8 having negative in uences on health, and 6 as having either a positive or a negative in uence on health, dependent on the individual and context (31) . Secondary (exploratory) analyses: We calculated median (IQR) scores for the PHQ8 (score range: 0-24) of which scores of ≥ 5, ≥10, and ≥ 20 indicate mild, moderate, and severe depression, respectively (32). We calculated median (IQR) for mastery scores, ranging from 7 to 28 with higher scores indicating greater levels of mastery (35). We calculated mean differences in pre and during pandemic PHQ8 (mental health) and mastery scores and conducted paired t-tests testing the null hypothesis that the mean change in disability score was zero (p < 0.05). We examined associations between HDQ domain severity scores during the pandemic (6 scores), and frequency of living strategies use (51 items) using Spearman correlational analysis for non-normally distributed data. We computed 306 rank correlations and used a Bonferroni adjusted alpha (α adj = 1.6 × 10 − 4 ) to report the most signi cant correlations. We chose the severity scale of the HDQ as this scale possesses most measurement properties. We recruited participants and administered the web-based survey between June 9 and August 12, 2020. Of 114 exercise study participants emailed to participate in the study, 60 (53%) clicked on the survey link (view rate), 59/60 (98%) consented to participate and initiated the questionnaires (participation rate), and 51/59 (86%) consented and completed the questionnaires (completion rate) (19) ; and 12 additionally participated after word of mouth recruitment. Hence there was a total of 63 participants, 51 of which also had HDQ, PHQ8 and Mastery scale data collected prior to the pandemic. The majority of participants were men (84%), White (65%), single (54%), and living alone (62%) with a median age 57 years (IQR: 49, 65 years). No participants reported testing positive for COVID-19. Of the 61 (97%) participants who were receiving care from an HIV doctor or clinic, 71% received care remotely (telephone or online) during the COVID-19 pandemic (Table 1) . Disability during the pandemic HDQ scores are presented in Table 2 . Across all 63 participants, the highest median HDQ severity, presence and episodic (daily uctuations of health challenges the past week) scores were in the uncertainty, mental-emotional, and physical domains, respectively (Table 2) . Table 4 ). Using a previously validated disability questionnaire with adults with HIV administered prior to the pandemic, we found that self-reported disability severity increased across all dimensions during the COVID-19 pandemic among adults with HIV, with the largest increase found in the presence, severity, and episodic components of mental-emotional health. This nding was supported by the signi cant increase in mean PHQ8 scores and 39% reporting a higher category of depression during the pandemic compared to prior (Additional File 1 and 2) . Similarly, the majority of participants reported 'more anxiety', 'more depression', or 'frustration of boredom' during the pandemic (Table 1) . Uncertainty followed by mental-emotional health challenges were the most severe dimensions of disability experienced during the pandemic (Table 2 ). These dimensions of disability are closely related as uncertainty is a strong predictor of mental-emotional health challenges for adults with HIV (37-39). The increase in uncertainty scores during the pandemic were supported by participants who reported fear of getting COVID-19 (75%), worrying about friends, family and partner (86%) ( Table 1) , suggesting factors that may be contributing to disability dimensions of uncertainty and mental-emotional health challenges in the HDQ scores. The concept of uncertainty in COVID-19 has been explored speci cally as it pertains to diagnostic uncertainty and unknown severity, duration, and long-term impact of symptoms associated with COVID-19 (40-42). The impact of uncertainty associated with an ongoing pandemic, uncertainty of acquiring COVID-19 and subsequently Long COVID, and ongoing safety measures and policy among individuals health and well-being during the pandemic is unclear. Uncertainty increased in severity but not presence, suggesting that existing uncertainty was exacerbated by the pandemic. Adults with HIV may have prior experiences living with uncertainty from the earlier days of the HIV epidemic (38, 39, 43) . However, the extent to which these prior experiences may exacerbate or equip an individual with strategies to deal with uncertainty during a new (COVID-19) pandemic is unknown and an area of future research. In addition to the greater risk and poorer outcomes of COVID-19 that may occur among people with HIV (44) (45) (46) (47) , the pandemic can further exacerbate stress and isolation, unemployment, food insecurity, access to care, and di culty managing underlying comorbidities (9, 48) . These factors may amplify disability, as re ected by the increase of HDQ severity scores across all dimensions in the sample. Evidence is emerging on the impact of HIV and COVID-19 as co-pandemics, including the impact of coinfection on health services (14) . Further qualitative inquiry may help to explore the nature and impact of the pandemic on health outcomes for adults with HIV. doctor remotely (71%), some reported di culties accessing (40%) and using (37%) health care services (Table 1) . Of note, the pandemic appeared to have less of an impact on employment, which is likely a re ection of almost half of the participants (46%) who were not working prior to the pandemic. The majority of participants reported sustained use of positive living strategies during the pandemic with the exception of positive social interaction strategies and negative strategies (e.g. isolating self) that increased during the pandemic (Additional File 3). Another study similarly reported that higher levels of social support and resilient coping were associated with lower depressive symptoms among adults with HIV in the context of the COVID-19 pandemic (50) . The increase in social isolation (spending less time with support networks, less time going out or spending time with others, and tending to isolate self more), a likely consequence of the COVID-19 restrictions, aligns with the increase in disability in dimensions of social inclusion and mental-emotional health as measured by the HDQ. This highlights the role for remote social support and services that can promote social interaction and support among community during the pandemic. To our knowledge this is the rst study to explore the nature, extent and impact of disability experienced by adults with HIV prior to and during the COVID-19 pandemic, and to speci cally explore the impact of the COVID-19 pandemic on health outcomes and living strategies use for people with chronic illness. This work provides insights to the health challenges experienced by adults with HIV who may be living with the added complexity of concurrent health conditions (51) (52) (53) , and speci cally the common mental health conditions such as anxiety and depression. Opportunities exist for health providers to apply the lessons While a strength of our study was building on data collected pre-pandemic (HDQ, PHQ8, mastery) with an existing cohort of adults living with HIV who participated in an earlier exercise intervention study, our study is not without limitations. We assessed disability and living strategies use cross-sectionally during the pandemic, as distinct constructs and cannot infer causation between the pandemic and disability and living strategies use. Due to our small sample size, our analysis was exploratory. Furthermore, the clinical importance of HDQ change scores, particularly given the episodic nature of disability in the context of the COVID-19 pandemic is unclear. Nevertheless, our inclusion of supplemental measures of mental health (PHQ8) support the direction of change in disability this study. Given the majority of the sample were from a previous study examining the impact of community-based exercise among adults living with HIV, primarily including White men living in an urban setting, results may not be representative of the larger HIV population. Men and women can experience disability differently pertaining to hospitalization, parental roles, fatigue, mental health, and social inclusion (56) (57) (58) . Future work should examine the in uence of gender on the disability experiences among adults with HIV in the context of the pandemic. Participants with HIV reported high levels of uncertainty and mental health challenges during the pandemic. All six dimensions of disability increased during the pandemic, the largest increase was the mental-emotional health domain. Strategies involving maintaining a sense of control, and positive attitudes and beliefs were associated with lower disability during the pandemic. Results help to provide an understanding of disability and self-care living strategy use among adults living with HIV during the COVID-19 pandemic. HIV -Human Immunode ciency Virus Survival of HIV-positive patients starting antiretroviral therapy between 1996 and 2013: a collaborative analysis of cohort studies. The lancet HIV The end of AIDS: HIV infection as a chronic disease Multimorbidity and functional status assessment A cross-sectional, population-based study measuring comorbidity among people living with HIV in Ontario Functional impairment, disability, and frailty in adults aging with HIV-infection Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework Putting episodic disability into context: a qualitative study exploring factors that in uence disability experienced by adults living with HIV/AIDS Impact of climate and public health interventions on the COVID-19 pandemic: A prospective cohort study The Burden of COVID-19 in People Living with HIV: A Syndemic Perspective Maintaining HIV care during the COVID-19 pandemic. The lancet HIV Optimizing the engagement of care cascade: a critical step to maximize the impact of HIV treatment as prevention. Current opinion in HIV and AIDS Barriers along the care cascade of HIV-infected men in a large urban center of Brazil Group for lessons from pandemic HIVpftC-r. Three lessons for the COVID-19 response from pandemic HIV. The lancet HIV COVID-19 and HIV infection co-pandemics and their impact: a review of the literature Looking at antiretroviral adherence through a disability lens: a cross-sectional analysis of the intersection of disability, adherence, and health status Predictors of Adult Retention in HIV Care: A Systematic Review Effect of a self-management program on patients with chronic disease Living a Healthy Life with HIV Improving the quality of web surveys: the checklist for reporting results of Internet E-surveys (CHERRIES) Evaluating a community-based exercise intervention with adults living with HIV: protocol for an interrupted time series study Mail and Internet surveys: The tailored design method--2007 Update with new Internet, visual, and mixed-mode guide Available from Which dimensions of disability does the HIV Disability Questionnaire (HDQ) measure? A factor analysis Measuring disability experienced by adults living with HIV: assessing construct validity of the HIV Disability Questionnaire using con rmatory factor analysis Community engagement in health status instrument development: experience with the HIV disability questionnaire Reliability and validity of a new HIV-speci c questionnaire with adults living with HIV in Canada and Ireland: the HIV Disability Questionnaire (HDQ) Evaluation of the psychometric properties of the HIV Disability Questionnaire among adults living with HIV in the United Kingdom: A cross-sectional self-report measurement study Use of Living Strategies among Adults Aging with HIV in Canada: Comparison by Age-Group Using Data from the HIV, Health and Rehabilitation Survey The PHQ-8 as a measure of current depression in the general population Excess burden of depression among HIV-infected persons receiving medical care in the united states: data from the medical monitoring project and the behavioral risk factor surveillance system PHQ-9 and PHQ-8 in a large military prospective study, the Millennium Cohort Study R: A language and environment for statistical computing. R Foundation for Statistical Computing Characterizing the disability experience among adults living with HIV: a structural equation model using the HIV disability questionnaire (HDQ) within the HIV, health and rehabilitation survey Aging with HIV and disability: the role of uncertainty National Institute for Health Research (NIHR) Uncertainty and COVID-19: how are we to respond Clinical uncertainty and Covid-19: Embrace the questions and nd solutions Six Lessons for COVID-19 Rehabilitation From HIV Rehabilitation Coronavirus disease 2019 (COVID-19) outcomes in HIV/AIDS patients: a systematic review related hospitalization among people with HIV in the ISARIC WHO Clinical Characterization Protocol (UK): a prospective observational study HIV infection and COVID-19 death: a population-based cohort analysis of UK primary care data and linked national death registrations within the OpenSAFELY platform. The lancet HIV Consequences of COVID-19 crisis for persons with HIV: the impact of social determinants of health May Exacerbate Experiences of Social Isolation among People Living with HIV Mental Health, Coping, and Social Support Among People Living with HIV in the Americas: A Comparative Study Between Argentina and the USA During the SARS-CoV-2 Pandemic Prevalence of cardiovascular diseases in HIV-infected outpatients: results from a prospective Prevalence of depression or depressive symptoms among people living with HIV/AIDS in China: a systematic review and meta-analysis Mental health and HIV/AIDS: the need for an integrated response AIDSImpact special issue -broadening the lens: recommendations from rehabilitation in chronic disease to advance healthy ageing with HIV The COVID-19 pandemic has increased the care burden of women and families. Sustainability: Science, Practice, and Policy COVID-19: the gendered impacts of the outbreak Covid-19: Middle aged women face greater risk of debilitating long term symptoms Acknowledgements: We acknowledge the adults living with HIV who participated in this study.