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.

Collaborative development of an educational resource on rehabilitation for people living with HIV.

OBJECTIVE: The objective of this study is to describe the collaborative development of a rehabilitation guide for people living with human immunodeficiency virus (HIV) which was adapted from an online resource for clinicians. METHODS: We adapted a comprehensive evidence-informed online clinical resource for people living with HIV using a three-phase participatory process. In Phase 1, we interviewed 26 clinicians and 16 people living with HIV to gather recommendations on how to adapt and format the content to benefit people living with HIV. In Phase 2, we adapted the patient education resource using the recommendations that emerged from Phase 1. Phase 3 consisted of comprehensive stakeholder review of the revised resource on the adaptability, usability, communicability, and relevance of the information. Stakeholders participated in an interview to obtain in-depth information on their perspectives. Transcribed interviews underwent qualitative content analysis. RESULTS: Stakeholders indicated that the e-guide had utility for people living with HIV, community HIV service organizations, and care providers. CONCLUSION: Engaging people living with HIV resulted in a more relevant and meaningful resource that incorporated patients' values, needs, and preferences. IMPLICATIONS: Involving multiple stakeholders and user groups in the adaptation and evaluation of online patient education resources can assist in meeting patients' needs through increasing the relevance, organization and presentation of the content, and incorporating patients' values and needs. Implications for Rehabilitation Online patient education resources should be adapted in order to maximize relevance and meaningfulness to patients. Involving multiple stakeholders in the adaptation and evaluation of online patient education resources can assist in meeting patients' needs. Involving multiple stakeholders increases the relevance, organization and presentation of the content and allows the incorporation of patient values and needs. This collaborative approach with an emphasis on meaningful participation of patients and community may be of interest to others interested in promoting knowledge translation.

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.