Strategies Employed by Community-Based Service Providers to Address HIV-Associated Neurocognitive Challenges: A Qualitative Study

Abstract

Background:HIV-associated neurocognitive disorders and other causes of neurocognitive challenges experienced by people living with HIV (PLWH) persist as public health concerns in developed countries. Consequently, PLWH who experience neurocognitive challenges increasingly require social support and mental health services from community-based providers in the HIV sector.Methods:Thirty-three providers from 22 AIDS service organizations across Ontario, Canada, were interviewed to determine the strategies they used to support PLWH experiencing neurocognitive difficulties. Thematic analysis was conducted to determine key themes from the interview data.Results:Three types of strategies were identified: (a) intrapersonal, (b) interpersonal, and (c) organizational. Intrapersonal strategies involved learning and staying informed about causes of neurocognitive challenges. Interpersonal strategies included providing practical assistance, information, counseling, and/or referrals to PLWH. Organizational strategies included creating dedicated support groups for PLWH experiencing neurocognitive challenges, partnering with other organizations with services not available within their own organization, and advocating for greater access to services with expertise and experience working with PLWH.Conclusion:Through concerted efforts in the future, it is likely that empirically investigating, developing, and customizing these strategies specifically to address HIV-associated neurocognitive challenges will yield improved social support and mental health outcomes for PLWH.

Quality of life in people living with HIV-associated neurocognitive disorder: A scoping review study

“…Limitations of this review include the paucity of studies from sub-Saharan Africa, where the burden of HIV is highest, along with a lack of examination of the sociodemographic factors impacting QoL in this population. Furthermore, important consideration must be paid to the context in which this research appears, whereby screening and diagnosing HIV-associated neurocognitive impairments remains relatively limited in clinical settings [ 2 , 73 ], with no consensus on screening tools and concerns regarding the importance of routine testing [ 74 , 75 ], given the majority of instances are asymptomatic and services extremely limited [ 76 ].…”

Scaling Up Information Sharing on HIV-Associated Neurocognitive Disorder: Raising Awareness and Knowledge Among Key Stakeholders

“…PHI scholars have put forward the importance of valuing collaborations between public and private sectors (Edmunds et al, 2014). Interestingly, health care and service providers in our study also expressed the value of collaborations in increasing open communication and sharing of resources among HIV/AIDS specialists, researchers, policymakers, providers, patients, and laypersons from both sectors (Liboro et al, 2019). They emphasized that increasing open communication and sharing resources through collaborations could improve health care and service delivery, and health and service outcomes, particularly those related to HAND, by making current evidence- and values-based information, diverse perspectives from work and lived experiences, and timely feedback available and accessible to everyone in the public and private sectors who are working toward the same goals.…”

“…This makes social media and online discussion platforms potentially ideal tools to be utilized for scaling up HAND information sharing in addition to traditional Knowledge Mobilization tools that have been conventionally used to provide unidirectional communication of specific messages from scholars and experts to knowledge users (Iribarren et al, 2018;Noble et al, 2017). Case in point, in our own research study, none of the 33 community-based health care and service providers we interviewed who were aware of and had some knowledge about HAND obtained their information from social media and online discussion platforms; their awareness and knowledge on HAND were exclusively gained from more traditional sources such as conference and community presentations, fact sheets and information brochures, and AIDS service organization websites (Liboro et al, 2017(Liboro et al, , 2018(Liboro et al, , 2019. Some studies have proposed that social media and online discussion platforms could be utilized as viable alternatives to traditional Knowledge Mobilization tools because unlike social media and online discussion platforms, traditional Knowledge Mobilization tools may not comprehensively cover current influential factors and trends present in the community by the time they disseminate information (Hannaford et al, 2018;Noble et al, 2017).…”

“…The emphasis of promoting multidirectional communication is on the potentially significant impact of the interaction among key stakeholders that cannot be obtained from the delivery of information going only in one direction, customarily from HIV/AIDS experts and academic researchers to primary health care and service providers, and then to patients and service users. Multidirectional communication could potentially help overcome personal and professional barriers to gaining greater awareness and knowledge about HAND that health care and service providers encounter (Liboro et al, 2017, 2018, 2019), and prospectively, benefit all stakeholders involved. Timely information from HIV/AIDS specialists and scholars can help providers develop their practice guidelines and address issues of PLWH experiencing neurocognitive challenges within the scopes of their practice.…”

Protocol for a pilot randomised controlled trial evaluating feasibility and acceptability of cognitive remediation group therapy compared with mutual aid group therapy for people ageing with HIV-associated neurocognitive disorder (HAND) in Toronto, Canada

“…With the earlier age of impairment and syndemic factors associated with HIV, HAND may be a condition in need of specific psychosocial intervention distinct from what is currently being tested in geriatric adults with dementia 12 14. Yet despite exploratory research on the unique challenges of HAND and a stated community need,11 12 15–17 HAND intervention research in the era of modern cART is limited and the optimal intervention is unclear 13 14…”