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.

BACKGROUND: People aging with HIV can experience a variety of health challenges associated with HIV and multimorbidity, referred to as 'disability'. Our aim was to characterize the disability experience and examine relationships between dimensions of disability among adults living with HIV. METHODS: We performed a structural equation modeling analysis with data from the Canadian web-based HIV, Health and Rehabilitation Survey. We measured disability using the HIV Disability Questionnaire (HDQ), a patient-reported outcome (69 items) that measures presence, severity and episodic features of disability across six domains: 1) physical symptoms, 2) cognitive symptoms, 3) mental-emotional health symptoms, 4) difficulties carrying out day-to-day activities, 5) uncertainty and worrying about the future, and 6) challenges to social inclusion. We used HDQ severity domain scores to represent disability dimensions and developed a structural model to assess relationships between disability dimensions using path analysis. We determined overall model fit with a Root Mean Square Error of Approximation (RMSEA) of < 0.05. We classified path coefficients of ≥ 0.2-0.5 as a medium (moderate) effect and > 0.5 a large (strong) effect. We used Mplus software for the analysis. RESULTS: Of the 941 respondents, most (79%) were men, taking combination antiretroviral medications (90%) and living with two or more simultaneous health conditions (72%). Highest HDQ presence and severity scores were in the uncertainty domain. The measurement model had good overall fit (RMSEA= 0.04). Results from the structural model identified physical symptoms as a strong direct predictor of having difficulties carrying out day-to-day activities (standardized path coefficient: 0.54; p < 0.001) and moderate predictor of having mental-emotional health symptoms (0.24; p < 0.001) and uncertainty (0.36; p < 0.001). Uncertainty was a strong direct predictor of having mental-emotional health symptoms (0.53; p < 0.001) and moderate direct predictor of having challenges to social inclusion (0.38; p < 0.001). The relationship from physical and cognitive symptoms to challenges to social inclusion was mediated by uncertainty, mental-emotional health symptoms, and difficulties carrying out day-to-day activities (total indirect effect from physical: 0.22; from cognitive: 0.18; p < 0.001). CONCLUSIONS: Uncertainty is a principal dimension of disability experienced by adults with HIV. Findings provide a foundation for clinicians and researchers to conceptualize disability and identifying areas to target interventions.

Optimism alongside new challenges: using a rehabilitation framework to explore experiences of a qualitative longitudinal cohort of people living with HIV on antiretroviral treatment in Lusaka, Zambia.

Previous research has demonstrated increased comorbidities related to the chronic effects of HIV. Rehabilitation science offers a useful approach for studying chronic illness. This longitudinal qualitative study used a rehabilitation science approach to explore the experiences over time of women and men living with HIV and on antiretroviral therapy (ART) in the high HIV-prevalence setting of Lusaka, Zambia. Thirty-five participants participated in a total of 99 in-depth interviews from 2012 to 2015. The central pattern that emerged across the participants' narratives was the paradoxical experience of profound optimism alongside significant new challenges. Participants' stories of hopefulness in the face of ongoing struggles played out in three interconnected themes: (1) impacts on my body and life; (2) interventions I am grateful to have and new interventions I need; and (3) stigma reduced and created by ART. Results reflected the ups and downs of life with HIV as a chronic illness. Participants, whilst committed to and healthier on ART, typically experienced multiple physical, psychological and sensory impairments that varied in type, severity and trajectory. Participants valued improved relationships enabled by ART, but yearned for support for living long-term with HIV. Frequently participants reflected that their needs were overlooked related to managing side-effects, exercise, family planning and healthy sexuality. ART strengthened acceptance by self and others through improved health and productivity and through becoming a source of support for others. However, being on ART also led to stigma, driven by persistent associations with sickness, death, lack of productivity and uncertainty. This study points to shortcomings in the current focus of HIV care in Zambia and the region, which centres on initiating and adhering to ART. Findings call for evolution of the HIV care continuum to embrace a more holistic and long-term approach to living with HIV as a chronic and episodic condition.

Protective Factors That Foster Resilience to HIV/AIDS: Insights and Lived Experiences of Older Gay, Bisexual, and Other Men Who Have Sex with Men.

Since the beginning of the HIV/AIDS epidemic, gay, bisexual, and other men who have sex with men (gbMSM) have been disproportionately impacted by HIV/AIDS health disparities. Research showed that resilience to HIV/AIDS is associated with increased use of relevant health services, lower sexual health risks, and improved mental health outcomes among racially and ethnically diverse gbMSM. As the subpopulation that has historically been impacted by HIV/AIDS the longest, older gbMSM living with HIV/AIDS have inarguably exhibited resilience to HIV/AIDS the most. The qualitative study described in this paper sought to identify and examine protective factors that fostered resilience to HIV/AIDS based on the insights and lived experiences of racially and ethnically diverse, older gbMSM. Applying a community-based participatory research approach that included the meaningful involvement of older gbMSM living with HIV/AIDS in different roles (i.e., advisory committee member, collaborator, peer researcher, and participant), the study recruited and included forty-one older gbMSM living with HIV/AIDS from Ontario, Canada, in confidential, semi-structured interviews. Utilizing thematic analysis, we identified three major themes from the participant interviews as factors that fostered the resilience of older gbMSM to HIV/AIDS and helped to address HIV/AIDS health disparities: (1) established protective factors, (2) behavioral protective factors, and (3) controversial protective factors. This paper argues for the importance of valuing and capitalizing on these protective factors in the conceptualization and development of interventions, services, and programs that are dedicated to fostering resilience to HIV/AIDS.

Supporting choices about HIV disclosure in the workplace: A cross-Canada survey of strategies.

BACKGROUND: People living with human immunodeficiency virus (HIV) often make highly personal decisions about whether or not to disclose their HIV status in the workplace. OBJECTIVE: We aimed to determine current practices that support people living with HIV to make workplace disclosure decisions and to understand factors that affect disclosure decision-making. METHODS: Ninety-four people who provide health, social and peer-based services responded to an on-line survey about their experiences supporting workplace disclosure decisions of employees living with HIV. RESULTS: Respondents identified a range of strategies to support workplace disclosure decision-making. One-third of respondents were only a little or not confident in their abilities to support people in making disclosure decisions and 32% expressed little or no confidence in the resources available. Respondents working at HIV-specific organizations, as compared to respondents not working at those organizations, were more confident supporting people with disclosure decisions and in available resources, p < .05. Perceived barriers to disclosure decisions included stigma, lack of knowledge, and personal factors. Supports for decision-making resided within personal, workplace and societal contexts. CONCLUSIONS: The study provides important understanding about the complexity of disclosure decision-making and strategies that people living with HIV can use to address this complex issue.

Use of Living Strategies among Adults Aging with HIV in Canada: Comparison by Age-Group Using Data from the HIV, Health and Rehabilitation Survey.

OBJECTIVE: To examine the type and frequency of living strategies used by adults living with HIV. METHODS: We conducted a cross-sectional web-based survey that included 51 living strategies: maintaining sense of control, attitudes and beliefs, blocking HIV out of the mind, and social interaction. We examined the frequency of use and compared the proportion of respondents who engaged in strategies across 3 age-groups (<40 years, 40-49 years, and ≥50 years). RESULTS: Of the 935 participants, the majority were men (79%) and most (≥60%) engaged "most" or "all of the time" in healthy lifestyle strategies and maintained a positive outlook living with HIV. Compared to younger participants, a higher proportion of older adults (≥50 years) engaged "most" or "all the time" in strategies that involved maintaining control over health and adopting positive attitudes and outlook living with HIV. CONCLUSIONS: Findings can help to inform the role of self-management to enhance successful aging with HIV.

Evolution of an International Research Collaborative in HIV and Rehabilitation: Community Engaged Process, Lessons Learned, and Recommendations.

BACKGROUND: Human immunodeficiency virus (HIV) is increasingly considered a chronic illness. Rehabilitation can address some of the health challenges of people living with HIV (PLWHIV); however, the field is emerging. OBJECTIVES: We describe our experience establishing an international collaborative in HIV and rehabilitation research using a community engaged approach. METHODS: The Canada-UK (now Canada-International) HIV and Rehabilitation Research Collaborative (CIHRRC) is a network of more than 85 PLWHIV, researchers, clinicians, and representatives from community-based organizations collectively working to advance knowledge on HIV and rehabilitation. RESULTS: Activities and outcomes include facilitating knowledge transfer and exchange (KTE), establishing and strengthening multistakeholder partnerships, and identifying new and emerging priorities in the field. Collaboration and support from community organizations fostered mechanisms to raise the profile of, and evidence for, rehabilitation in the context of HIV. Considerations of scope, partnership, and sustainability are important. We offer recommendations for developing an international community-academic-clinical research collaborative using a community-engaged approach. CONCLUSIONS: Research networks involving community-academic-clinical partnerships can help to promote KTE and establish a coordinated response for addressing priorities in an emerging field.

"It Is an Eye-Opener That There Is a Relationship between Rehabilitation and HIV": Perspectives of Physiotherapists and Occupational Therapists in Kenya and Zambia on the Role of Rehabilitation with Adults and Children Living with HIV.

Purpose: To present the perspectives of rehabilitation providers-physiotherapists and occupational therapists-in Kenya and Zambia on the role of rehabilitation in the care of adults and children living with HIV. Methods: This qualitative, interpretivist study was part of a broader project to adapt a Canadian e-module on HIV-related disability for rehabilitation providers in Sub-Saharan Africa (SSA). Focus groups, demographic questionnaires, and knowledge-attitude-belief surveys were conducted with rehabilitation providers in Kenya and Zambia. Focus group data were analyzed inductively using an iterative content analysis. Results: Sixty-three rehabilitation providers (52 physiotherapists, 11 occupational therapists) participated in 10 focus groups in Nyanza Province, Kenya, and Lusaka, Zambia. The participants described the role of rehabilitation in HIV care in terms of missed opportunities related to (1) HIV disclosure; (2) inter-professional and inter-sectoral collaboration; (3) community-based rehabilitation; (4) training for rehabilitation providers; (5) pediatric rehabilitation; and (6) the connections among disability, HIV, and poverty. Conclusions: The results point to the need for HIV policy and practice leaders to develop new models of care that recognize the crucial role of rehabilitation in the long-term management of HIV to address the shifting needs of the 25 million people living longer with HIV in SSA.

Objectif : présenter le point de vue qu'ont au Kenya et en Zambie les fournisseurs de services de réadaptation ­ physiothérapeutes et ergothérapeutes ­ sur le rôle que joue la réadaptation dans les soins aux adultes et aux enfants vivant avec le virus de l'immunodéficience humaine (VIH). Méthodes : cette étude qualitative et interprétative faisait partie d'un projet plus large visant à adapter, pour les besoins des fournisseurs de services de réadaptation de l'Afrique subsaharienne, un module d'apprentissage électronique canadien sur l'incapacité liée au VIH. Nous avons recueilli des données auprès de fournisseurs au Kenya et en Zambie au moyen de groupes de consultation, de questionnaires démographiques et d'enquêtes portant sur les savoirs, les attitudes et les croyances. Les données provenant des groupes de consultation ont été analysées à l'aide d'une méthode itérative et de manière inductive. Résultats : au total, 63 fournisseurs de services de réadaptation (52 physiothérapeutes, 11 ergothérapeutes) ont participé à 10 groupes de consultation dans la province de Nyanza au Kenya et dans la ville de Lusaka en Zambie. Les participants ont décrit le rôle que joue la réadaptation dans les soins aux personnes vivant avec le VIH en termes d'occasions manquées liées à : (1) la divulgation de la séropositivité ; (2) la collaboration interprofessionnelle et intersectorielle ; (3) les projets de réadaptation à l'échelle communautaire ; (4) la formation des fournisseurs de services de réadaptation ; (5) la réadaptation pédiatrique ; et (6) les liens entre incapacité, VIH et pauvreté. Conclusion : les résultats soulignent la nécessité pour les dirigeants en matière de politiques et de pratiques relatives au VIH de reconnaître le rôle essentiel que joue la réadaptation dans la prise en charge à long terme qui s'impose pour les 25 millions de personnes qui vivent maintenant plus longtemps avec le VIH en Afrique subsaharienne.