Browsing by Author "Kokorelias, Kristina M."

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Open Access
Adapting Cognitive Remediation Group Therapy Online: Focus Groups with People Aging with HIV
(SAGE Publications, 2024-01) Eaton, Andrew D.; Hui, Jenny; Muchenje, Marvelous; Kon, Taylor; Murzin, Kate; Carusone, Soo Chan; Novik, Nuelle; Quigley, Adria; Kokorelias, Kristina M.; Ibáñez-Carrasco, Francisco
Cognitive health is a significant concern for people aging with HIV/AIDS. Psychosocial group therapies may help people aging with HIV who experience cognitive challenges cope with their symptoms. The COVID-19 pandemic revealed in-person group therapies need adaptation for technology-mediated delivery. Peer-led focus groups discussed adapting cognitive remediation group therapy (CRGT) as an online intervention. CRGT combines mindfulness-based stress reduction and brain training activities. Purposive sampling recruited people aging with HIV (40+) who self-identified cognitive concerns and resided in one of two Canadian provinces. Thematic content analysis was employed on transcripts by seven independent coders. Ten, 2-hour focus groups were conducted between August and November 2022. Participants (n=45) responded favorably to CRGT's modalities. Alongside support for its continued implementation in-person, participants requested online synchronous and online asynchronous formats. Preferred intervention facilitators were peers and mental health professionals. We also discuss how to adapt psychosocial HIV therapies for technology-mediated delivery.
Open Access
Co-Creating Socio-Culturally-Appropriate Virtual Geriatric Care for Older Adults Living With HIV: A Community-Based Participatory, Intersectional Protocol
(Sage, 2023-10-06) Kokorelias, Kristina M.; Wasilewski, Marina B.; Flanagan, Ashley; Zhabokritsky, Alice; Singh, Hardeep; Dove, Erica; Eaton, Andrew D.; Valentine, Dean; Sheppard, Christine L.; Abdelhalim, Reham; Parpia, Rabea; Zewude, Rahel; Jamieson, Laura; Grosse, Anna; Walmsley, Sharon L.; Brown, Paige; Sirisegaram, Luxey
The aging cohort of persons living with human immunodeficiency virus (HIV) in Canada has reached a critical point, with nearly half now 50 years age or older. Older persons living with HIV have specific needs which can be effectively addressed by geriatric specialists. However, the recognition of HIV care as a domain of geriatrics is recent, resulting in a lack of clinical recommendations and modern care models for delivering geriatric care to this population. Virtual care has been demonstrated to reduce existing barriers to accessing HIV care in some populations but before it can be adapted to geriatric HIV care a critical first step is to acknowledge and understand disparities in socioeconomic circumstances, technology access and ability and cultural differences in experiences. This protocol marks the initial step in a comprehensive program of research aimed at co-designing, implementing, and evaluating culturally-appropriate virtual geriatric care for diverse older adults living with HIV. The study employs qualitative methods with older adults living with HIV to lay the groundwork, to inform the future development of a virtual model of geriatric care. We will explore the perspectives of diverse groups of older persons with HIV on (1) The value and necessity of culturally-tailored virtual interventions for geriatric HIV care; and (2) Recommendations on how best to engage older persons with HIV in the future co-design of a virtual model of geriatric HIV care. Ultimately, a more culturally-appropriate approach to care will foster a more inclusive and supportive healthcare system for all individuals affected by HIV including those who are aging. Researchers can utilize this research protocol to employ qualitative co-design and participatory methods with diverse older adults living with HIV.
Open Access
Exploring caregiver experiences and support needs in end-of-life care for people living with HIV: A scoping review protocol
(Public Library of Science (PLoS), 2024-12-02) Kokorelias, Kristina M.; Eaton, Andrew D.; Wasilewski, Marina B.; Redublo, Tyler; Sirisegaram, Luxey; Chukwudi Nnaji
Background and objectives End-of-life care supports individuals in the last few weeks or months of their life and their caregivers, offering psychosocial support, symptom management and relief, and resources. While some of the first public end-of-life care facilities were established due to HIV/AIDS, the current needs of caregivers for people living with end-stage HIV are not well understood. Caregivers provide two-thirds of the care for people living with HIV, yet their specific support needs and experiences are under-researched. Existing strategies often use a “one-size-fits-all” approach, which may not address the unique challenges faced by these caregivers, such as stigma and lack of social support. This study aims to synthesize the literature on the end-of-life care experiences and needs of caregivers for individuals living with HIV. Research design and methods A scoping review, guided by Arksey and O’Malley’s framework and the Joanna Briggs Institute’s recommendations, will be conducted. An Information Specialist will assist in developing a search strategy to be applied across databases like Medline, Embase, PsycINFO, and PubMed. Search results from each database will be imported into Covidence software for duplicate removal and title and abstract screening. Two researchers will independently screen studies using the ‘Population–Concept–Context’ (PCC) framework, with screening conducted at two levels: title and abstract, and full-text. The inclusion criteria will be piloted on a random sample of articles to ensure inter-rater agreement (kappa statistic >0.61). Disagreements will be resolved through discussion or with the involvement of a content expert if needed. Final selections will be reported using the PRISMA flow diagram, and reasons for exclusion will be documented. Discussion and implications The findings from this scoping review will provide valuable insights into the end-of-life care experiences and support needs of caregivers for individuals living with HIV. By identifying common themes and challenges, such as caregiver fatigue, emotional strain, stigma, and lack of social support, this study will underscore the inadequacy of the current “one-size-fits-all” approach in addressing the unique needs of these caregivers. This research has the potential to influence both clinical practice and policy by advocating for more personalized support strategies within end-of-life care settings.
Open Access
Exploring the Perspectives of Older Adults Living With HIV on Virtual Care: Qualitative Study
(JMIR Publications Inc., 2024-12-04) Kokorelias, Kristina M.; Valentine, Dean; Dove, Erica; Brown, Paige; McKinlay, Stuart; Sheppard, Christine L.; Singh, Hardeep; Eaton, Andrew D.; Jamieson, Laura; Wasilewski, Marina B.; Zhabokritsky, Alice; Flanagan, Ashley; Abdelhalim, Reham; Zewude, Rahel; Parpia, Rabea; Walmsley, Sharon L.; Sirisegaram, Luxey
Background As the population of individuals with HIV ages rapidly due to advancements in antiretroviral therapy, virtual care has become an increasingly vital component in managing their complex health needs. However, little is known about perceptions of care among older adults living with HIV. Objective This study aimed to understand the perceptions of older adults living with HIV regarding care. Methods Using an interpretive, qualitative, descriptive methodology, semistructured interviews were conducted with 14 diverse older adults living with HIV. The participants lived in Ontario, Canada, self-identified as HIV-positive, and were aged 50 years or older. Efforts were made to recruit individuals with varying experience with health care. Reflexive thematic analysis was conducted with the interview transcripts to identify prevalent themes. Results The identified themes included (1) the importance of relationships in virtual care for older adults living with HIV; (2) privacy and confidentiality in virtual care; and (3) challenges and solutions related to access and technological barriers in virtual care. These themes highlight the perceptions of diverse older adults living with HIV concerning care, emphasizing the fundamental role of trust, privacy, and technology access. Conclusions By embracing the unique perspectives and experiences of this population, we can work toward building more inclusive and responsive health care systems that meet the needs of all individuals, regardless of age, HIV status, or other intersecting identities.
Open Access
Methodological Insights From an Experience-Based Co-Design Method Applied to a Study of Older Adults Living with HIV’s Perspectives on Virtual Geriatric Care
(SAGE Publications, 2025-04) Kokorelias, Kristina M.; Wasilewski, Marina B.; Singh, Hardeep; Valentine, Dean; Eaton, Andrew D.; Sheppard, Christine L.; Sirisegaram, Luxey
This paper outlines the application of Experience-Based Co-Design (EBCD) to explore the perspectives of older adults living with HIV regarding virtual geriatric care. The study focuses on identifying the unique needs, challenges, and preferences of this population in the context of remote healthcare delivery models. EBCD, a participatory research method, engages service users, healthcare providers, and stakeholders in co-designing solutions to improve healthcare services. By involving participants throughout the research process, the approach ensures that resulting interventions are informed by real-world experiences, enhancing their likelihood of acceptance and effectiveness. The methodology includes in-depth interviews, focus groups, and journey mapping with older adults living with HIV to gather data. Through collaborative discussions, care gaps were identified, and key areas for improvement in virtual care were highlighted. Active participation from healthcare professionals ensured that these findings were translated into actionable solutions. Practical insights were also gained on fostering an inclusive and respectful environment for marginalized populations, ensuring that their voices were central to the co-design process. This study demonstrates that EBCD is an effective method for engaging older adults living with HIV in the design of virtual care interventions, leading to patient-centered solutions that address both clinical and psychosocial needs. Key contributions of the study include the development of a framework for applying EBCD in virtual geriatric care, identification of critical care gaps in this context, and the promotion of inclusive practices for vulnerable populations. The findings suggest that EBCD can play a significant role in advancing health equity and improving the quality of care for older adults living with HIV, especially as virtual healthcare continues to evolve.
Open Access
“They didn't think we'd live this long”: A qualitative exploration of older adults living with HIV perspectives on geriatric care in Ontario
(Wiley, 2025-05-22) Kokorelias, Kristina M.; Valentine, Dean; Eaton, Andrew D.; Dove, Erica; Su, Esther; Sheppard, Christine L.; McKinlay, Stuart; Brown, Paige; Singh, Hardeep; Wasilewski, Marina B.; Flanagan, Ashley; Zhabokritsky, Alice; Abdelhalim, Reham; Parpia, Rabea; Zewude, Rahel; Jamieson, Laura; Walmsley, Sharon L.; Sirisegaram, Luxey
Introduction Advances in human immunodeficiency virus (HIV) care have increased life expectancy, leading to more older adults living with HIV. This study examines older adults' perspectives on geriatric healthcare needs. Methods A community‐based qualitative study in Ontario, Canada, recruited some adults aged 50+ years living with HIV through quota and purposive sampling. Quota sampling was used to include individuals of different ages, genders and ethno‐racial backgrounds to capture a range of experiences. Data were collected via semi‐structured interviews and focus groups, analyzed using the Qualitative Analysis Guide of Leuven. Results Participants included interviewees (n = 14) and focus group attendees (n = 12). Four themes emerged: (1) lack of knowledge and access to geriatric care, highlighting service challenges; (2) healthcare providers' understanding of HIV and ageing, with stigma concerns; (3) role of social support networks for emotional/practical support; and (4) requirements for improved geriatric care, advocating provider education and greater social care access. Conclusions Gaps in geriatric care for older adults with HIV highlight stigma, access issues and the need for education, virtual care and tailored, inclusive healthcare solutions.
Open Access
Understanding the use of co-design methods for research involving older adults living with HIV: A scoping review protocol
(PLOS, 2024-05-30) Brown, Paige; Singh, Hardeep; Su, Esther; Sirisegaram, Luxey; Munce, Sarah E.P.; Eaton, Andrew D.; Zhabokritsky, Alice; McKinlay, Stuart; Kokorelias, Kristina M.
There is a growing population of adults aged 50 years or older living with HIV, facing unique challenges in care due to age, minority status, and stigma. Co-design methodologies, aligning with patient-centered care, have potential for informing interventions addressing the complex needs of older adults with HIV. Despite challenges, co-design has shown promise in empowering older individuals to actively participate in shaping their care experiences. The scoping review outlined here aims to identify gaps in existing co-design work with this population, emphasizing the importance of inclusivity based on PROGRESS-Plus characteristics for future patient-oriented research. This scoping review protocol is informed by the Joanna Briggs Institute Manual to explore co-design methods in geriatric HIV care literature. The methodology encompasses six stages: 1) developing research questions, 2) creating a search strategy, 3) screening and selecting evidence, 4) data extraction, 5) data analysis using content analysis, and 6) consultation with key stakeholders, including community partners and individuals with lived experience. The review will involve a comprehensive literature search, including peer-reviewed databases and gray literature, to identify relevant studies conducted in the past 20 years. The inclusive criteria focus on empirical data related to co-design methods in HIV care for individuals aged 50 or older, aiming to inform future research and co-design studies in geriatric HIV care. The study will be limited by the exclusion of papers not published or translated to English. Additionally, the varied terminology used to describe co-design across different research may result in the exclusion of articles using alternative terms. The consultation with key stakeholders will be crucial for translating insights into meaningful co-design solutions for virtual HIV care, aiming to provide a comprehensive synthesis that informs evidence-based strategies and addresses disparities in geriatric HIV care.