A community-academic partnered approach to designing a Virtual Village to address the needs of older adults living with HIV

Abstract

Many older adults living with HIV face unique health and psychosocial challenges, including comorbidities, loneliness, and isolation risks. This community-academic partnered study elicits viewpoints from older adults living with HIV about the characteristics of a digital environment (“Virtual Village”) to connect people to combat against loneliness and isolation, under the common identity of growing older with HIV. We utilized Choice-Based Conjoint Analyses to determine preferred attributes of a Virtual Village. We also conducted focus groups and interviews with older adults living with HIV and used an iterative, data-driven approach to systematically identify emergent themes. Participants (N=82) were aged 50–82 years and racially/ethnically diverse. The majority were men (78%), gay (66%), and had lived with HIV for ≥15 years (83%). Cost (free) was the factor that most drove participants’ preference for joining a Virtual Village. Thematic concerns included lack of technological confidence, internet access, potential for harassment in digital environments, privacy, and preference for in-person interactions. Praises centered on convenience and making connections across geographic distances. Participants emphasized the need for purposive strategies to form a cohesive and supportive community for older adults living with HIV. Having a moderator and screening of potential members to confirm HIV status were suggested means of maintaining a respectful online community. Our findings indicate that careful, intentional strategies should be used to create a safe, structured, and comfortable digital environment for older adults living with HIV. A Virtual Village should be viewed as a bridge to in-person interactions.

INTRODUCTION

The majority of the 1.1 million people living with HIV in the United States are ages 50 or older (CDC, 2020). Older adults living with HIV face unique health and psychosocial challenges, compounded by age-associated challenges (Ruiz et al., 2022), that occur within the context of life-long discrimination and stigma (Parker & Aggleton, 2003). Gay and bisexual men are disproportionately impacted and many long-term survivors experienced significant trauma during the acute phase of the epidemic in the 1980-90s. The loss of friends, loved ones, and other important social ties left a tangible impact on social isolation which persist in later life (Schrimshaw & Siegel, 2003). Women make up 23% of people living with HIV in the US (CDC, 2020) and although women have different historical experiences from gay communities, persistent lifelong experiences with stigma and marginalization exacerbate isolation (Akhtar et al., 2017). As a whole, older adults living with HIV are more likely than their younger counterparts to be socially isolated (Shippy & Karpiak, 2005) and lonely (Greene et al., 2017).

Social isolation and loneliness have detrimental effects on health outcomes, leading to increased risk for dementia, cognitive decline (Freak-Poli et al., 2022; Penninkilampi et al., 2018) and depression (Cacioppo et al., 2006). During the COVID-19 pandemic, lonely older adults were more likely than non-lonely older adults to delay or avoid needed medical care and the association was stronger among those with emotional or psychiatric problems and those with fair or poor self-rated health, illustrating the multiplicative harms of loneliness (Li et al., 2022). Although loneliness and social isolation are distinct concepts, they are often related. Fried et al. (2020) offered a definition for loneliness that illustrates its connection to social isolation, calling it a “subjective negative experience that results from inadequate meaningful connections.”

There is an urgent need for practical strategies to mitigate loneliness and isolation in later life, and the COVID-19 pandemic has shifted the implementation landscape. Now in the endemic phase, older adults living with HIV continue to be at elevated risk for COVID-19 complications (Barbera et al., 2021) and may feel the need to remain cautious about in-person interactions. Thus, virtual strategies and interventions will be critical over the coming years by offering alternative ways for people to socially engage. A large body of literature describes a gamut of interventions for mitigating loneliness and social isolation (e.g., social enrichment programs, friendship clubs), and it is possible to adapt many of these to an online environment (Cattan et al., 2005; Fried et al., 2020; Perissinotto et al., 2019).

The proposed solution—a Virtual Village for older adults living with HIV

Our study considers an intervention through a lens inspired by the “village movement”. A village is typically consumer-driven and revolves around a neighborhood where a coordinator might be employed to assist older residents to age in place in their homes (Scharlach et al., 2012). A “Virtual Village” (B. Brown et al., 2021) translates this concept to a digital platform where the centralized location is cloud-based.

The Virtual Village envisioned in our project is a digital environment that brings people together under the common identity of growing older with HIV, to create a positive space for social interactions to combat isolation and loneliness. Housed within a community-based organization, HIV+Aging Research Project-Palm Springs (HARP-PS), our Virtual Village taps into intrinsic motivators for social engagement by rallying participants around this common identity. People living with HIV have historically been the drivers of AIDS activism and social movements (Wright, 2013). Many older adults living with HIV identify with the movement to recognize the issues faced by long-term survivors (Trout, 2020), calling for HIV research to incorporate the perspectives of older adults. It is against this sociocultural backdrop that we envision the Virtual Village and its role as an engaging space for older adults living with HIV to stay active to mitigate isolation and loneliness. With these goals in mind, this study aimed to elicit viewpoints from older adults living with HIV about the characteristics of a Virtual Village, to inform its creation.

METHODS

This project involved a partnership between HARP-PS and researchers at various academic institutions. In keeping with best practices for conducting community-centered HIV research (Weinstein et al., 2023), we convened a community advisory board (CAB) of 24 older adults living with HIV to help to guide the research. We used a grounded theory approach for data collection by inductively deriving a framework for the Virtual Village through the data itself (Guetterman et al., 2019). We recruited participants from Los Angeles, CA, Coachella Valley, CA, and Tampa Bay, FL, under the following inclusion criteria: 1) ages 50+, 2) self-identify as living with HIV, 3) able to complete study procedures in English, and 4) access to video conferencing software. Flyers were distributed inviting potential participants to take part in either a focus group or an individual, in-depth interview. Participants received $50 for study completion. All study procedures were reviewed and approved by the University of California, Riverside Institutional Review Board.

Consented participants completed a demographic survey via Qualtrics which concluded with a Choice-Based Conjoint (CBC) Analysis exercise developed using Sawtooth Software’s Lighthouse Studio (v 9.15.0) CBC function to understand user preferences for key characteristics of the Virtual Village. Next, focus groups and interviews were conducted and recorded over Zoom using identical interview guides (Table 1). We conducted both focus groups and interviews to harness the benefits of each methodology. The group dynamic in focus groups prompts the emergence of ideas that may not occur one-on-one. On the other hand, more personal thoughts may emerge in individual interviews where the participant may perceive a greater sense of privacy (Carr et al., 2020). Focus groups lasted about 90 minutes, and interviews lasted approximately 50 minutes.

Table 1.

Consolidated semi-structured interview guide from interviews and focus groups

1. What do you think about virtual formats for connecting with other people? How comfortable are you using social media sites? What do you use it for? What do you find most valuable about social media? What do you not like about it? What are the challenges of using something like Facebook for connecting with people?

2. If we develop something online that you can use to connect with people for information, assistance, and socializing, who would you want to connect with? What services would you use it for? What would you not use it for? PROBE: How much would you use it to connect with doctors, CBOs, pharmacists, singles?

3. What are some of the factors that might be important in deciding what to include in a virtual village for older adults living with HIV? What do you think about the online format? Who should be able to sign in and use it? Who can’t? What about cost considerations? How about privacy and information that you provide through the platform?

Choice-Based Conjoint Exercise

Choice-Based Conjoint is a consumer market-based methodology developed in the 1970’s designed specifically for the task of determining which characteristics most influence a consumer’s decision to purchase a product or service and follows two fundamental assumptions: 1) when choosing between similar products/services, consumers make choices based on the interconnected characteristics that make up the products/services and make tradeoffs leading to a product preference; and 2) consumers make preferences rationally and preferentially select products/services that increase personal benefit and minimize personal costs (B. W. Brown & Walker, 1989). To design the Choice-Based Conjoint exercise, the research team constructed a preliminary list of potential attributes based on existing knowledge, literature, and a priori variables of interest. Next the preliminary variables were discussed with the CAB to solicit their opinions. When possible, similar variables were consolidated into single attributes. The research staff then rank-ordered the attributes based on the feasibility of implementation (Figure 1).

Figure 1.

Rank order exercise of attributes to include in the Virtual Village

Finally, the top five attributes and their levels (“options”) were selected (Figure 2) and programmed into Sawtooth. Participants are presented with eight different “tasks”, with each task presenting four different hypothetical scenarios. All scenarios shared the same five attributes but differed on attribute levels. For each task, participants selected one scenario they found most acceptable based on the available options. See Figure 3.

Figure 2.

Final conjoint analysis attributes and corresponding levels

Figure 3.

Choice-Based Conjoint task

Analytical approach

Choice-Based Conjoint Analysis

Data were analyzed in Sawtooth Software, which derives attribute utilities (i.e., the preferred level within each attribute) and overall attribute importance (i.e., the relative impact of each attribute across respondent choices).

Focus Groups and Interviews

Audio recordings of all focus groups and interviews were transcribed using Otter.ai transcription software and checked by hand for accuracy. De-identified transcripts were coded in NVivo software using an iterative, data-driven, thematic coding scheme, consistent with a grounded theory approach (Corbin & Strauss, 1990; Strauss & Corbin, 1994). First, members of the research team reviewed selected transcripts and discussed impressions about broad, overarching themes. Next, an emergent codebook was created using line-by-line coding and organized by a primary coder into thematic groups and hierarchies. The codebook was reviewed by the research team to ensure that it adequately captured the themes in the data. Then, two coders independently coded all transcripts and met in intervals to review coding and revise the codebook to add or modify existing themes. Coding discrepancies were discussed until consensus was achieved. To protect participants’ identities, pseudonyms are used here and the exact ages are withheld.

RESULTS

We conducted three focus groups per location with 57 people across nine groups. Twenty-five individuals participated in interviews (Los Angeles=8, Coachella Valley=9, Tampa Bay=8). Across all 82 participants, the median age was 59.5 years. The majority identified as cisgender men and gay. Participants were racially and ethnically diverse. See Table 2.

Table 2.

Participant characteristics (N=82)

	N, %
Age [mean (SD); range]	61.2 (8.0); range: 50–82
Years living with HIV [mean (SD); range]	25.4 (0.1); range: 1–45
Gender
Cisgender men	64, 78.0%
Cisgender women	18, 22.0%
Sexual orientation
Gay	54, 65.9%
Heterosexual/straight	18, 22.0%
Bisexual	8, 9.8%
Other orientation	2, 2.4%
Race/ethnicity
Non-Hispanic White	39, 47.6%
Black/African American	28, 34.1%
Hispanic/Latino/a/x	10, 12.2%
Other identity	5, 6.1%
Highest education completed
Graduate education	16, 19.8%
4-year university	23, 28.4%
Some college	26, 32.1%
High school or less	16, 19.8%
Lived alone (yes)	56, 68.3%
Used social media (yes)	56, 68.3%

Choice-Based Conjoint Analysis

Choice-Based Conjoint data were available for 81 participants. Table 3 displays the attribute levels most preferred across all hypothetical scenarios and participants. Regarding overall attribute importance (i.e., the relative impact of each attribute across respondent choices), cost was the most important attribute driving participant choice of hypothetical Virtual Village scenarios. See Figure 4.

Table 3.

Preferred attribute levels for the Virtual Village

Attribute	Preferred Level*
Chat	Chat function available
Cost	Free to use
Communities	Have communities
Services	Have service directory
Registration	Registration required

^*Compared to other options; all p <.05

Figure 4.

Relative importance of attributes driving choice of Virtual Village scenarios

Qualitative Themes

Concerns related to virtual formats for building meaningful connections

Accessibility was a concern with participants citing worries about the costs related to having an internet connection and computing equipment and lack of confidence using technology. There were also concerns about prejudice being amplified in a virtual environment where people may feel emboldened to express discriminatory viewpoints and remain anonymous. Brian (early 50s, Tampa Bay) shared an experience where a friend he made through social media “found out that I was gay and he went off and I just blocked him… he was homophobic.” Pat (early 60s, Tampa Bay) shared her experience about unwanted sexual solicitations over social media and Brian agreed that social sites can quickly become “a hookup website.”

Privacy was a concern for many participants. Some pointed out that video conferencing was not secure because it was possible for someone to record their computer screen without the participants’ knowledge. The potential for hackers to gain access to personal data was also a concern. For some, in-person interactions and were still preferred. Tom (early 70s, Tampa Bay) explained, “I can't give you a hug, can I? It's always nicer to be close to someone.” As Mike (early 60s, Coachella Valley) stated, “I have a very nice computer but the fact that it is how I'm meeting you guys and preventing me from being out in the real world makes me want to throw it across the room against the wall.”

Praises for virtual connections

Many participants enjoyed the convenience that web platforms offer for connecting and the ability to meet people across geographical boundaries. As Kevin (late 50s, Coachella Valley) described, “it opens up the world a bit.” Chuck (early 60s, Coachella Valley) stated, “One of the things that would appeal to me about the Virtual Village is to be able to connect with people that I wouldn't meet otherwise. That might be in a different city.” Avoiding physical travel was lauded, especially by those who lived in areas where roads are often congested. Several participants pointed out that in certain situations, it can be easier to hear a conversation online. For example, a conversation with a friend over a video conferencing might deliver clearer audio compared to sitting in a crowded coffee shop. Many expressed a belief that despite the limitations of virtual connections, it is possible to form strong connections without meeting in person. Don (late 50s, Coachella Valley) stated: “We don't have to be in the same place to connect. Clearly, we can't break bread together, you know, we can't hug each other. But good Lord, we can connect in a way.”

Use of the Virtual Village

There was a desire for community building, as illustrated in this quote from Steve (late 60s, Los Angeles): “There's got to be an element that's gonna make us all feel like we are a part of that… makes you feel like you're part of a community, that is something that is going to embrace you and make you feel welcome.” John (late 60s, Coachella Valley) explained that a community for people aging with HIV was needed because, “When it comes to living with HIV…the reality of stigma, which is still incredibly intense out there, you know, there's so many different issues that I think would be helpful to be addressed.” For many, finding community revolved around building positive connections and sharing common experiences around HIV and aging. Donna (mid 50s, Tampa Bay) described it as promoting a sense of, “I’ve gotten through it, I can help you try to get through, too.”

Other broad considerations for the Virtual Village included a call for moderators to monitor interactions and intervene in inappropriate conduct. There were also suggestions for members to be screened prior to joining the Virtual Village to verify their HIV status and prevent malicious actors. Kim (mid 50s, Tampa Bay) cautioned:

We can't necessarily have outsiders coming into an HIV meeting. You know, I don't carry a banner, but yet, I don't feel the need to hide my identity either. But I do know there are those that have their prejudiced ideas of people with HIV.

Another woman, Cynthia (mid 60s, Coachella Valley) also expressed caution with sharing HIV status, explaining that “the stigma for women is unfortunately, really heavy.” Lastly, there were many calls to consider ways to bridge the Virtual Village with the real world. This sentiment is summarized in Paul’s (late 60s, Coachella Valley) quote:

If there was a way to create a Virtual Village that was geared toward respecting one another's humanity, and in an environment where people interacted with each other from a place of honesty, integrity, and transparency. And that was geared toward not only creating that virtually, but transferring it into real world experiences. I would love that.

DISCUSSION

Interventions designed to mitigate loneliness and social isolation among older adults living with HIV are needed. Digital platforms hold promise as a mode of content delivery to create and strength social connections, but strategies that incorporate linkages to opportunities for in-person engagement may be ideal for older adults living with HIV. For example, the social mixers that were held in this intervention could easily be organized at a local coffee shop or other real-life settings. Implementers of such interventions will need to balance the advantages of digital content delivery in crossing geographical and time zone boundaries with the preference that some older adults may have for in-person engagement. Although, internet use among older adults in the US has increased over time (Hunsaker & Hargittai, 2018) studies have also pointed out disparities in use among older adults. Namely, that racial and ethnic minorities as well as those in the “oldest old” age group are less likely to use the internet (Hunsaker & Hargittai, 2018; Yoon et al., 2021). Thoughtful consideration is needed so that the digital divide among older adults is not exacerbated with the growth of digital interventions.

While internet use and uptake of technology is growing in popularity among older adults, real and perceived limitations in technological skills and knowledge can create frustration and be barriers to use (Wilson et al., 2021). For intervention development, manualizing a “training” phase for participants to practice and become comfortable with a Virtual Village environment and function may be prudent. Pre-recorded, instructional videos were appreciated by the participants in our study and act as a resource for participants when immediate assistance from a member of the research team was not available. Our participants also expressed some apprehension towards technology use and a particular discomfort with the harassment that that can occur in the digital space. For people living with HIV, stigma and discrimination are pervasive problems (Andersson et al., 2020; Geter et al., 2018) and the potential for inappropriate conduct to occur reinforced the importance of maintaining exclusive programs and spaces for older adults living with HIV. Creating a code of conduct that participants must abide by prior to participation can be a critical tool for setting expectations and rules for engagement. Protocol can also be created for administrators of the Virtual Village to monitor, assess, and act on inappropriate activity.

Another consideration is that in our study, most participants desired a Virtual Village that was free to use. Thus, a Virtual Village that requires the user to pay a registration or subscription fee may not attract wide interest and limited in feasibility. However, providing such a service at no cost to the user has practical implications, Well-developed and customizable information systems for managing group membership, organizing contact information, and delivering specific content may not be free to access. Systems that are free to access may have practices that bring up privacy concerns if personal data about individuals are maintained or sold to third party marketers. Thus, there is a challenge of tapping into different funding models of obtaining the resources required to provide a quality and effective experience for users but not through passing the cost on to the participants themselves.

Our study demonstrates there is value in creating programming exclusively for people living with HIV. There has been a call for researchers and policymakers to move away from the concept of “HIV exceptionalism” (Benton & Sangaramoorthy, 2021). In recognition of the unique social and structural conditions that create and enhance vulnerability to HIV transmission, HIV-related programs and practices have traditionally been organized around HIV-specific policies, funding opportunities, and targeted at populations more likely to be at risk for HIV (Gómez-Ramírez et al., 2021). However, some scholars have criticized HIV exceptionalism for fettering the ability of HIV programs to scale-up and integrate more broadly into sexual health programs and compete for funding (Blain et al., 2021; Gómez-Ramírez et al., 2021). Blain et al (2021) further suggest that policies informed by HIV exceptionalism now “paradoxically perpetuate stigma and inequities” by creating barriers to services. They point to the fact that despite the CDC recommendation for routine HIV screening, some healthcare clinics may require a separate documented consent process. Extending the discussion to loneliness and social isolation digital interventions for older adults, one argument is that targeted interventions for people living with HIV are not needed. However, we argue that the threat of discrimination and harassment because of HIV status is salient and there are circumstances where targeted programs and interventions for people living with HIV can engage those who may otherwise shy away from spaces that are not intentionally created as safe environments for people living with HIV.

There are several limitations in this study. Participants were recruited from three regions to account for regional differences in perspectives and experiences, but the sample was not nationally representative. Participants represented a younger group of older adults and given the technological divide between “younger” and “older” older adults, the enthusiasm for the Virtual Village expressed here may not fully reflect the attitudes of those in their 80s and 90s. Lastly, because focus groups and interviews were conducted over a video conferencing, a few participants without access to a smartphone dialed into the connection via telephone. While this allowed participation to occur, individuals with an audio-only connection may not have interacted to the same extent as those who had a video connection. Intentional strategies to provide access to individuals with no or limited internet access to teleconferencing technologies will be an important consideration for the implementation of Virtual Villages.

This study provided practical points for designing the framework for a Virtual Village for people living with HIV to address loneliness and social isolation. First, careful and intentional strategies should be used to create a safe and comfortable environment for older adults who identify as living with HIV. Second, aging with HIV is a common experience that offers a shared platform for bringing people together. Third, the Virtual Village should be viewed as a bridge to in-person interactions.