Using Focus Group Feedback to Identify Patient-Centered Initiatives for Older Persons with HIV

Abstract

Objectives:

This study assessed how few community-based programs target older people living with HIV.

Methods:

We conducted four focus groups comprised of people 50 and older with HIV (N=32; gay/bisexual men, heterosexual men, women, and Spanish-speakers) to inform HIV program development by exploring the services in which participants were actively involved, along with the services they wanted to receive.

Results:

Using inductive thematic qualitative analyses, four themes were identified pertaining to program development: (a) types of currently utilized HIV service organizations; (b) dissatisfaction with HIV programming and services; (c) participants’ preferred programming, courses, groups, or activities; and (d) desire to serve as peer mentors.

Conclusions:

Results highlight the need for community-based organizations to address social engagement and isolation among older people living with HIV.

Clinical implications:

These findings exemplify the need for programs to be specifically designed for OPH, and created with the primary goals of socialization and helping develop social support networks.

Introduction

According to the Centers for Disease Control and Prevention (CDC; 2019), the population of older people with HIV (OPH) is steadily increasing (Hood et al., 2017). Due to effective antiretroviral treatment, many people can now live a near-normal life span with HIV (New York City Department of Health and Mental Hygiene, HIV Epidemiology & Field Service Program, 2017). People over the age of 50 accounted for 49% of all individuals living with HIV in the U.S. in 2017 (CDC, 2019). By 2030, it is predicted that 65–70% of people with HIV will be age 50 and older (Cohen, Klein, Matosky, Mills, Redwood & Cheever, 2019). This improved survival rate underlies the aging of the HIV epidemic.

Depression affects as many as one out of three people with HIV (Bhatia & Munjal, 2014), and as a consequence, many are socially isolated and do not have adequate social support from friends and family, key resources for successful aging (Perissinotto et al., 2019; Greene et al., 2018; Solomon et al., 2017). Despite this, most research has focused on HIV prevention, care initiatives, and interventions for people 15 to 40 years of age, with less attention given to the needs of older adults with HIV (Hood et al., 2017). Little is known about OPH perceptions of existing HIV support programs and the related unmet needs. There are some limited health and social programs for OPH in the U.S., more often they are located at large AIDS Service Organizations (ASOs). Examples include the Elizabeth Taylor 50-Plus Network in San Francisco, CA and in New York City, support programs for long term survivors at GMHC.

The Older Americans Act (OAA) has underwritten community-based services that provide support to enable older adults to remain independent. Some of these services include home-delivered meals, transportation, nutrition education, counseling, legal assistance, and adult day care programs (National Committee to Preserve Social Security and Medicare, 2016). Authors of the OAA, which was passed in 1965, could not have anticipated the unique and emerging needs of OPH. OPH often face increased and overlapping medical and mental health challenges and are less likely to seek and access support from social and institutional settings among all older adults (Quinn, Sanders & Petroll, 2017). The median age of OPH ranges between 58–59 years old, they are largely ineligible to receive the services they require from programs such as the OAA (Brennan-Ing, 2017). Research focused on the stigma and discrimination faced by older adults and those with HIV have identified the inequities faced by these groups, but often fall short when addressing the intersecting ways that OPH are disadvantaged and often unable to participate in mainstream older adult services, (Cox & Brennan-ing, 2017) or how OPH are disproportionately impacted by gaps in the health care system (Subica & Brown, 2020). Efforts to reduce stigma and expand support for OPH are given low priority, and few effective programs are available (Mahajan et al., 2008). This can be detrimental to the wellbeing of OPH, especially in times of wide-spread pandemics such as they are now experiencing with COVID-19.

The purpose of the present study was to understand how OPH’s social and health needs can be better served by community programming. We examined the resources (e.g., organizations and programming) that participants were currently accessing; what participants perceived was absent from existing programs; and what they were actively doing in their communities to support the development of programs specifically for OPH.

Methods

Sample Characteristics

A total of 52 participants were screened and scheduled to take part in the focus groups; out of the 52 scheduled, 32 (61.5%) participated. Participants were predominately male (69%). Participant ages ranged from 50 to 79 years, with a mean of 61 years of age. Years since HIV diagnosis ranged from 14 – 36 years. The majority of participants reported that they were Black, African-American, or Caribbean (68%). Thirteen-percent identified as being White or Caucasian, 3% identified Asian or Asian-American/Pacific Islander, and 16% identified as being some other race. Thirty-seven percent of participants identified as Latinx. With regards to sexual orientation, 34% of participants identified as heterosexual or straight, 34% gay, 16% bisexual, 9% same gender loving, and 6% were “questioning.” Two-thirds of participants reported that they were single/not married, while 16% reported that they were widowed/partner deceased, 6% were married or had a life partner, and 9% said they were divorced or separated. The four focus groups were categorized as follows: (a) gay/bisexual men (n = 10), (b) heterosexual men (n = 6), (c) women (n = 9), and (d) Spanish-speaking (n = 7).

Participants and Recruitment

Participants were recruited from two HIV clinics affiliated with a major hospital in the Northeast, and four community-based support groups for those aging with HIV. Recruitment involved the use of flyers, referrals from providers at the HIV clinic, and word-of-mouth. Potential participants telephoned the research coordinator using the number provided on the recruitment flyers. Enrollment was conducted over the phone; those who were interested in the study called and were screened for eligibility. Once deemed eligible, participants were assigned to a focus group. Enrollment was open to individuals not receiving services from the two HIV clinics. Nine participants were not clinic patients. Participant eligibility criteria included being age 50 years or older, self-reported HIV-infection, and willing and able to share their experiences related to aging with HIV in a confidential group setting. Participants were asked when they contracted HIV via a demographics sheet obtained during the focus group. All of the participants’ diagnoses were reported as 10 years ago or earlier, occurring between 1984 to 2006.

Data collection protocols received IRB approval from participating institutions. Participants provided written informed consent prior to taking part in the focus groups, which were conducted in November, 2015.

Procedures

The study sought to explore different experiences of individuals aging with HIV across three demographic factors (sexual orientation, gender identity, and language). The present study focuses on the information pertaining to perceptions of programmatic needs related to HIV and aging. All focus groups were held at the two HIV clinic locations. Each group followed the same protocol. There were four facilitators total, with two facilitators leading each focus group through a series of eight questions (see Appendix for the interview guide). All facilitators had prior experience and training in qualitative methods and conducting focus groups, and were members of the research team. One of the two Spanish-speaking focus group facilitators was fluent in Spanish and English. Upon arrival, participants were given a brief overview of the study and after being guided through the contents of the informed consent, participants were then provided with time to read the informed consent and ask clarifying questions, and sign the informed consent. Next, participants were asked to complete a brief questionnaire on basic demographic characteristics before the focus group started. The duration of each focus group was approximately two hours. Participants were compensated for their time with a $25 gift card and a roundtrip transit fare card. Light snacks were provided.

Two audio recorders were used to capture the group’s discussion for transcription. Before focus groups commenced, participants were asked not to use names during the session and to keep everything discussed confidential. In the event names were used inadvertently by participants, they were deleted from the transcripts. At the conclusion of each group, participants were debriefed. Participants were offered the option of receiving a formal summary report on the study findings. Participants were also asked if the research coordinator had permission to contact them in the future regarding any social and educational programming opportunities developed based on this research.

Design and Analysis

Audio-recordings were transcribed by a professional transcription service and validated by study investigators to ensure accuracy and completeness of the transcript. The facilitators of each group reviewed the transcripts to ensure that the focus group sessions were accurately transcribed. For the Spanish-speaking focus group, the transcription was translated from Spanish into English by a professional translation service and checked for accuracy by a bilingual reader against the audio recording.

We used inductive thematic text analysis to examine the focus group data. Namely, concepts and themes in the data emerged through an iterative process of transcript review, interpretation, coding, and consensus discussions among coders (Green & Thorogood, 2004; Shen et al., 2015). See below for details regarding this multi-phase process of coding.

For the purposes of this study, we designated the myriad programs, organizations, and services that participants utilized or wanted to utilize as resources. We included all resources that participants considered beneficial to their health and wellbeing. In Phase 1 of our inductive thematic analysis, two team members evaluated each transcript, highlighted content deemed relevant to the study questions, and created an initial code book consisting of descriptive concepts identified during transcript review (Miles & Huberman, 1994). Each team member independently developed codes capturing their interpretation of the participants’ comments. The team mutually agreed on the final codes and definitions, and reached consensus on how to apply the codes to the data. This process was repeated for each transcript until a final codebook was created. In Phase 2, the same two team members who evaluated each transcript recoded all four transcripts using the finalized codebook. This iterative process was repeated until all data had been coded and synthesized into a finding’s summary. In Phase 3, one of the team members who conducted Phases 1 and 2, along with another team member, reviewed the synthesized findings produced for each transcript and generated descriptive and interpretive themes that represented common findings observed across all group transcripts.

In Phase 4, we assessed the salience of the identified findings in two ways. First, we considered whether there was a consensus amongst team members regarding themes and corresponding codes (Patton, 1999). Team members, who had coded the transcripts separately came to an agreement on item coding. Next, we examined the recurrence of thematic findings across the four focus groups. We included themes that were either evident across the majority of the focus groups or were prevalent within an individual group(s) (e.g., sexual minority men, women) (Patton, 1999). By also including group-specific relevant themes, we were able to identify valuable information that was not evident in all four focus groups. We also focused on identifying participants’ reports of both negative and positive experiences while accessing and utilizing programs and services. The variation within themes was assessed by team members, as different aspects of the theme were highlighted by each group. We primarily looked at variation within themes with regard to group membership, (e.g., for social connections the differences between gay/bisexual men and heterosexual men). Table 1 was created to illustrate the diversity that exists within a common theme.

Table 1.

Summary of qualitative results.

Theme	Gay/Bisexual Men	Heterosexual Men	Women	Spanish-Speaking
Theme 1: Types of currently utilized HIV service organizations Summary: Participants reported the different resources they use to cope with their HIV status.	Participants participated in organizations that acted as support systems for those aging with HIV. “I have another place I go to called… Community Counseling Meeting, CCM, and they help me there. That’s where I get my therapy from. I see a therapist there and I discuss what goes on with me... I’ve been going there for almost 6 years and between these two places, I’ve got the best out of life. I couldn’t ask for nothing better. You know, as long as I’m on top of things, that helps me as I age.” “…And, there’s a lot of groups at the Village Care day treatment program (http://www.villagecare.org/aids/day_treatment/) that I go to that help a lot too. Everybody there has HIV, so it’s an AIDS day treatment program.” “This year I felt the need to get back and somehow make connections with other people who were HIV positive and it was through SAGE. (Services & Advocacy for GLBT Elders https://www.sageusa.org). I’m part of a program called Aging and Caring with Pride and the social worker advised me about getting into a long-time survivor’s group.”	Participants seek programs and organizations to further inform them about HIV. “But as far as me, you know, I don’t know if you all (know) the program called Momentum https://www.nycservice.org/organizations …in fact when I started going there that’s when I was around people that was with the virus…” “There’s an organization, I go to them like once or twice…I only go for the forum that they have on HIV/hepatitis C, they have that once a month…the name of the organization is COPE.” (Coalition on Positive Health Empowerment https://copehealth.org)	Participants highlighted health and wellness as critical components of the organizations they participated in. “I go to the day care program where they do have a gym and that’s precisely why I go, they do have socialization, dancing, good healthy food to eat and nutrition…”	Participants highlighted support from mental health specialists and cohorts to help with their positive HIV status. “I’m going to the family center… I was sent to see the psychiatrist. So, there I receive psychological therapy, and I started in a similar support group there, for HIV, eight weeks…and I Learned a lot about HIV.” “I go to…another program. It’s called Saint (sic). It’s also for people that are getting older and gay…I like this kind of thing for gay people. I feel very comfortable with gay people, and more in my situation…that I have AIDS. I feel more supported and for me it’s very, very important. They have helped me in every aspect…and it’s been a great help, and to have a and to have a place to go that they give you lunch. They give you classes…exercise classes or groups too…it’s very beneficial.”
Theme 2: Dissatisfaction with services Summary: Participants expressed the difficulties and unhappiness they experienced when in search for programs that met their needs.	There is a desire to find others who are also gay/bisexual and HIV positive, but often times participants do not know where to begin. “I don’t seem to have a lot of social support in terms of meeting other homo men and that’s something that I really would like to explore or at least take advantage of. Because, for me I’m finding myself becoming more isolated from people.”	Services were often not geared to older straight men. “There’s not enough services for people of our class in our age group.”	Participants felt as though there was a lack of communication and that they were not being treated as valued individuals. “I go to a program called [omitted] on [omitted], and I’m getting real sick of that team and I’ve already got one foot out the door because the social workers are always too busy to even mention things to me.”	Participants felt as though Non-Latino based programs, or programs that adhered to their lack of fluency in English is a common issue. “Well, I go to [omitted], but there isn’t a program there for Latinos.” “There is a lot of misinformation about services.” “There are times when I try to speak English, and I know I’ve made mistakes…and I feel uncomfortable to keep talking.”
Theme 3: Participants’ preferred programming, courses, groups or activities Summary: Participants expressed the resources that they expressly desired for aiding them as they age with HIV.	There is a desire for social programs that allowed participants to communicate with other gay/bisexual men who held similar interests. “I’d like to echo what a lot of people have said in terms of more social programs because a lot of us, but I can only speak for myself. So, for me, I don’t seem to have a lot of social support in terms of meeting other homo men and that’s something that I really would like to explore or at least take advantage of…” “I mean feeling there’s a lack of social programs for people with HIV in which to come together and feel comfortable, to be able to communicate, to be able to connect on a personal level. I mean years ago, there were dances for HIV groups. They were wonderful. I took friends that were HIV positive and we had great times.”	Participants conveyed their desire to interact with and form relationships with people who are also 50+. Participants also find a need to learn modern technology in order to manage their healthcare. “There’s not enough services for people of our class in our age group… There could be a service even for not dating, but a place for people to get together here at the hospital that could provide… coffee…little snacks…that people get to interact with people who are HIV positive who is around the same age group. They could build…friendships, comfort zones to where… you can speak to someone that has the same thing, you don’t have no worries… ‘cause that’s the main thing. People will worry about… speaking about their virus.” “But the basic, you know, we should have classes or something because everything is online now, even checking your meds or checking your status with the clinic.”	Health, nutrition and maintenance of their overall wellbeing is overwhelmingly important to the participants as they age with HIV. “Well they actually are starting now, the things that I am so interested in, the Yoga, all these things that help you, alternatives to help you maintain your health...” “I’m looking for other alternatives to keep me from doing so much pain medicine like exercise, the water aerobics is wonderful.”	Communicating with others who are Spanish-speaking, 50+ and diagnosed with HIV. Additionally, participants find it important to be educated on how to efficiently use computers. “Share in a support group that has people with the same condition as us.” “As someone previously mentioned, a program that offered computer classes would be useful.”
Theme 4: Desire to serve as peer mentors Summary: Participants provided in depth accounts of the past and present ways in which they help or wish to help educate others about HIV.	Interacting with the community about the importance of being informed about HIV and AIDS is important to Gay/Bisexual participants. “For me the three things that I think are most important to me is having a positive attitude to get the most out of every day that I live and to have interests that really keep me busy, keep me interested, keep me exposed and interacting to other people as much as possible; which now is more harder for me because when I was younger, I was performing, I was interacting with audiences, I was part of gay liberation, part of Act Up (https://endaids.actupny.com), part of civil rights so 95% of my time was spent interacting with other people.” “I’m very engaged in the African American community with education and with mentoring. I mentor about 6 or 7 African American males and that’s really, really, very, very critical in maintaining my well-being.”	Participants tend to lend themselves to the community as volunteers. “GMHC (Gay Men’s Health Crisis http://www.gmhc.org). I used to work with them in volunteering and also doing counseling.” “And I do workshops, health workshops, in the church and once a month I do something about HIV and AIDS.”	Lending a helping hand to others who need guidance dealing with their diagnoses was important to the women’s participant group. “Like GMHC has a Buddy Program that they reinstituted. I used to work for the Buddy Program, I used to work as a Paired Health Specialist there and then they stopped the program for a long time.”	There is an emphasis on the need to spread knowledge to others who are Spanish-speaking and HIV positive, but a lack of wherewithal to do so. Especially with the Latino community, because the services that they offer…we don’t use them. Me, for example, I go swimming at the park and recreations center for older people. It costs $25 a year. You have gyms and a lot of things at the pool…The people that are there least are Hispanics.

Results

Themes

Four main themes were identified from the focus groups pertaining to program development: (a) types of currently utilized HIV service organizations; (b) dissatisfaction with HIV programming and services; (c) participants’ preferred programming, courses, groups, or activities; and (d) desire to serve as peer mentors. Table 1 summarizes the themes and how each group expressed them, including examples of their commonly used resources.

Theme 1: Currently utilized HIV service organizations

Participants described the specific programs and services that they currently used in addition to what they liked about the programs in which they engaged. We asked what programs participants were specifically interested in to better understand what services they were actively taking part in, and why these programs were important to them. Examples of the current organizations and programs participants take part in are included in Table 1, of which a number of ASOs and CBOs are mentioned. The programs that participants used included social programs indicating a perceived health benefit that complement typical prevention and viral suppression. Overall physical as well as mental health were high priority factors for many participants.

“I’m going to the family center… I was sent to see the psychiatrist. So, there I receive psychological therapy, and I started in a similar support group there, for HIV, eight weeks…and I learned a lot about HIV.” [Spanish-Speaking group]

“I have another place I go to called… Community Counseling Meeting, CCM, and they help me there. That’s where I get my therapy from. I see a therapist there and I discuss what goes on with me... I’ve been going there for almost 6 years and between these two places, I’ve got the best out of life. I couldn’t ask for nothing better. You know, as long as I’m on top of things, that helps me as I age.” [Gay/bisexual men’s group]

Many of these organizations enabled participants to connect with other OPH. In addition to engagement with others, participants also sought treatment options, therapy, and education in health and wellness. Both the women’s and the Spanish-speaking groups described how exercise and healthy diets help them age with HIV while taking care of their body. The resources accessed by participants assisted them in accomplishing this goal by teaching them tips for exercising and healthy eating behaviors that participants then incorporated into their daily lives.

“I go to the day care program where they do have a gym and that’s precisely why I go, they do have socialization, dancing, good healthy food to eat and nutrition…” [Women’s Group]

Theme 2: Dissatisfaction with services

The programs participants were interested in stemmed from the dissatisfaction that they had experienced with other programs they had once used but no longer wished to engage with. Participants across groups expressed unhappiness with the existing programs and resources made presently available to them, or dissatisfaction with the lack of programs, courses, groups, or activities tailored to their unique needs as OPH. Primarily, participants found that at times certain services and programs were disappointing. They said they were difficult to navigate and had staff and employees who did not have the time or the care to assist them with their needs.

“I go to a program called [omitted] on [omitted] Street, and I’m getting real sick of that team and I’ve already got one foot out the door because the social workers are always too busy to even mention things to me.” [Women’s group]

Although participants complained about a lack of programs geared toward their specific group, at times the participants were simply unaware of available services. Unique to the Spanish-speaking group was a concern about the scarcity of programming and the lack of awareness about existing programs. They felt that some programs or resources were insensitive to those who do not speak English fluently, and they were dissatisfied with these resources.

“There are times when I try to speak English, and I know I’ve made mistakes…and I feel uncomfortable to keep talking.” [Spanish-speaking group]

Theme 3: Participants’ preferred programming, courses, groups, or activities

HIV support groups were often referred to as safe havens where OPH felt comfortable openly speaking about HIV. With social isolation being highly prevalent among OPH, the resources that most interested participants unsurprisingly included some aspect of socialization. The hospital-based clinic from which a majority of participants were recruited was an example of a safe space where participants felt they could obtain the help they needed. Participants specifically expressed interest in social programming opportunities for people 50 and older, support groups, and exercise classes.

Program preferences varied by group, however. The women’s group discussed the benefits of having retreats and similar opportunities to unwind.

“Well they actually are starting now, the things that I am so interested in, the Yoga, all these things that help you, alternatives to help you maintain your health...” [Women’s group]

The gay/bisexual men’s group was especially interested in social programming and events that acted as a safe and comforting place where they could engage with other men like themselves.

“So, I would like to see what opportunities are for us to meet each other, and greet, talk, and just learn from each other because we have a lot of information that we can share with each other to help ourselves.” [Gay/bisexual men’s group]

Developing strong social connections to others was important to the participants of the gay/bisexual men’s group. Similarly, the heterosexual men’s group was interested in companionship and engagement with people who might become friends or romantic partners.

“There’s not enough services for people of our class in our age group… There could be a service even for not dating, but a place for people to get together here at the hospital that could provide… coffee…little snacks…that people get to interact with people who are HIV positive who is around the same age group.” [Heterosexual men’s group]

Although HIV education emerged as an important issue for participants, the Spanish-speaking and heterosexual men’s groups wanted to learn about computers in order to gain more personal autonomy (see Table 1).

Theme 4: Desire to serve as peer mentors

Participants also sought to give back, and they expressed a desire to educate others about HIV, both in the community and through programs and organizations. Participants expressed that they were able to cope as OPH by relying on strengths they had gained as long-time survivors. They felt that their resiliency allowed them to be mentors or educators for others. Participants volunteered at HIV/AIDS organizations such as GMHC’s Buddy Program, or at congregations, food pantries, or by acting as mentors to impressionable youth.

“I’m very engaged in the African-American community with education and with mentoring. I mentor about 6 or 7 African-American males and that’s really, really, very, very critical in maintaining my well-being.” [Gay/bisexual men’s group]

“And I do workshops, health workshops, in the church and once a month I do something about HIV and AIDS.” [Heterosexual men’s group]

Participants also expressed interest in developing new resources that would assist newly diagnosed PLWH to learn how to effectively cope.

“First of all, as older women, we have some experience. We need to be able to reach the younger person who might be struggling…and we need to be able to reach out and share our experiences with the younger person, the newly diagnosed because people who are newly diagnosed…are hopeless. It [doesn’t] need to be an age-specific thing.” [Women’s group]

“Maybe we could talk to the [newly] diagnosed people that come in like I’m just like you, I got the virus too.” [Heterosexual men’s group]

Lending a helping hand to others who have HIV, or are at risk for HIV, was a common idea that emerged from all groups. Some participants described how being a mentor to others motivates them to “keep going” and continue to overcome their own personal obstacles. Others explained that part of their persona is helping others. Without that they do not feel “whole.” Overall, the participants are aware of the knowledge they have and hope to be helpful to others who may be going through shared challenging circumstances.

Although the major themes listed reflect the overlapping interests that are apparent across groups, the differences between groups is equally important. Participants in the Women’s focus group overwhelmingly sought programs that provided nutrition and fitness education, whereas participants in the Heterosexual Men’s focus group wanted programs that were geared toward building relationships with other people who have HIV. Alleviating the concern of having to eventually disclose their HIV status was important to their social engagement with others. Participants in the Gay/Bisexual Men group similarly wanted to meet others, but were looking for more of a romantic connection through social programs. The participants from the Spanish-speaking group also had a lot of the same programing interests as the other groups but really struggled with navigating the resources due to language barriers. This is further detailed below.

Discussion

The purpose of the current study was to examine the program needs and goals of OPH, specifically in relation to services in which they were actively involved, and how programs could be improved to better meet their unique and emerging needs. Few research studies on services have focused specifically on the intersection of aging older adults who have HIV. Durvasula (2014) characterized this population as “unserved, unseen, and unheard”. The four themes build on one another; participant’s dissatisfaction with existing programs informed their prefences for what they would like out of a program, and they wished to assist others as a way of giving back and helping a system that helps them. The results of the current study highlight a need for additional resources and programming that are responsive to the specific needs of older OPH.

Common Themes across Groups

In all of the focus groups, participants reported active involvement in programs that pertained to social engagement with other OPH. Those in the gay/bisexual men’s group participated in organizations that acted as their support system as they age with HIV, often seeking programs or resources to assist with their overall mental and physical health and wellness. Similarly, participants in the heterosexual men’s group utilized organizations in connection with their HIV status to obtain needed social support. The Spanish-speaking group also attended support groups in order to learn about HIV and connect with other Spanish-speaking OPH. The women’s focus group identified programs that promoted health and wellness as their most frequently used resource.

Those who wish to develop programs with more inclusive options for all older OPH must recognize that social engagement was identified as a primary need in this study. When OPH hear personal testimonials from people who are similar to them and engage with others in the service sector, they realize that they are not alone in aging with this disease. This realization allows OPH to perceive their needs as being shared by others. In addition, many OPH find needed comfort from newly established social relationships (DeGrezia & Scrandis, 2015).

Existing research on senior centers could provide a useful guide for developing programs to address social engagement/isolation among OPH. We found that in each of the focus groups, participants mentioned that they would like to socialize with other OPH. Pardasani and Thompson (2012) assessed programming for older persons in senior centers. They discovered that senior centers were crucial for the socialization of many older people and have a positive impact on the same unmet needs that were identified in our study including friendships (Aday, Kehoe & Farney, 2006). Our findings indicate that OPH are interested in the same type of program opportunities as older adults without HIV who attend senior centers. However, fear of facing stigma because they are HIV-positive deters many OPH from accessing mainstream services such as senior centers, adding another barrier to engagement with others (Shen et al., 2018). Pardasani and Thompson (2012) acknowledged the need for new senior center models that are more inclusive for those under 75 years old who do not typically engage such community centers. As part of this reconfiguration, it would be useful if senior centers also included options geared toward OPH. This would assist in reducing HIV stigma.

Other focus group research conducted across the United States shows that social programs for OPH are necessary for healthy aging. During an HIV-focused focus group conducted in Palm Springs, CA, from January to February 2018, (Brown, et al. 2019) participants’ main concerns were their mental health, feelings of isolation and a lack of social support. In another focus group conducted in Coachella Valley’s Community of HIV survivors, participants worried about aging with no family or anybody else around to be there for them in their later days (Nguyen et al., 2017). These findings presented by these recent focus groups overlap with our findings and further emphasize the pervasive issue of social isolation that needs to be addressed by programs that serve OPH.

The gay/bisexual men’s group were dissatisfied with the limited opportunities to socialize with other aging gay/bisexual men. Coleman (2017) explained how older gay/bisexual men feel isolated, not only from the older adult’s family members, but also from younger gay/bisexual men. Coleman (2017) also discussed the phenomenon where older gay/bisexual men express that they would have no one with whom to grow old. This fear of isolation is manifested in the findings from the gay/bisexual men’s group’s unmet needs for socialization.

In both the gay/bisexual men’s and the heterosexual men’s groups, there was a strong desire to seek comfort and friendships through social programs or settings. Overall, the participants of the heterosexual men’s group felt that programs were simply not geared toward their sexual orientation and HIV-positive status. Both the heterosexual men’s group and the Spanish-speaking group were interested in classes that would help them learn basic computer skills. The women’s group expressed feelings that some organizations failed to value them as patients or consumers as they longed for a more personal more inclusive experience.

Language Barriers

The present study demonstrated that those who speak primarily Spanish may have greater difficulty accessing needed resources or supportive programming since information is more often in English. OPH do not typically seek HIV support groups or organizations, often because they do not know where to turn as language barriers further compound this issue (DeGrezia & Scrandis, 2015). Programming offered to OPH should be accessible to individuals of non-English speaking cultural and ethnic backgrounds which includes providing bilingual staff.

Summary and Conclusions

OPH encounter isolation and overwhelming lack of companionship; social engagement was the most overriding unmet need among participants. OPH were interested in support groups, social events and those activities that provide them with the opportunity to interact with other OPH. Second, there is a need for more diverse staffing to assist with outreach and program delivery for OPH who do not speak English as a first language or have diverse gender identities and sexual orientations. Lastly, we found that providing opportunities for OPH to share their knowledge, insights and unique lived experiences about living and aging with HIV would keep them actively engaged and invested in program activities and their community. This imparts a “purpose” for living.

Study Limitations

A majority of the participants recruited were patients at a clinic affiliated with a major hospital in the northeast. We recruited participants who were members of the same HIV clinic, and possibly involved in the same social networks, support groups, or organizations, which may have biased the qualitative findings. Findings may not be generalizable to other OPH who do not share these affiliations. In addition, we only conducted one focus group per population; although the discussions were in-depth and formally executed, generalizability of the findings may be limited. Lastly, a limitation of the research surrounding OPH is that it primarily has been conducted in New York or California, also limiting the generalizability of the findings.

Implications

Resources sponsored by the Older Americans Act (OAA) are designed to help older adults 60 years of age or older and focus on offering assistance to those who have large social or economic need (NCPSSM, 2016). The research presented here shows that an expansion of eligibility should be a priority, this would allow those younger than 60 to take advantage of the resources the OAA provides, therefore better serving the OPH population. OPH should be included in programs and policies that are generally used by the conventional older adult population (Brennan-ing, Seidel, London, Cahill & Karpiak, 2014). In order to combat this pervasive issue, the OAA could broaden their definition of those who are in the greatest social and or economic need to include older OPH and mandate outreach and cultural competency training on HIV and aging for providers (Cahill & Valadéz, 2013). A change in policy of this magnitude would allow CBOs to do what ASOs do not always have the capacity to offer, especially as the OPH population continues to grow.

ASOs and CBOs would benefit from partnering with medical facilities and clinical services to bridge the divide between services offered for OPH and services accessed by OPH. Creating a link between ASOs/CBOs that run programs and medical providers could facilitate enrollment in services. Future programs should attend to the needs of OPH in order to ensure they are aging successfully. These include nutrition and exercise classes, mentoring and volunteer opportunities, HIV education programs, computer courses, age-specific social programs, support groups, and social events such as dances or mixers for OPH. Asking OPH about precisely what they require is vital to the success of future programs, increasing the number of people attending, thereby increasing the emotional, social, and physical program benefits and outcomes. As the population of OPH diversifies and grows, so will their programming needs. HIV programs that once primarily focused on younger people with HIV must adapt to the needs of the increasing number of OPH population that now dominate the epidemic. Additionally, more research is needed on the development of programs that address the unique needs of OPH. This work will be instrumental in enabling providers to tailor programs to OPH and might significantly assist in the much-needed adaptation of care for this aging population.

Table 2.

Resources used by Focus Group Participants:

Category	HIV & Aging Resources	Website Description
Activism	ACT UP https://endaids.actupny.com	“Founded in 1987, ACT UP (AIDS Coalition to Unleash Power) is a diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis.”
Education	Coalition on Positive Health Empowerment (COPE) https://copehealth.org	“COPE’s [Coalition on Positive Health Empowerment] mission is to increase and promote health and wellness as well as reducing the incidence of preventable liver-related chronic diseases and lifestyles that negatively impact the liver.”
Health and Wellness	Center for Special Studies (CSS) http://www.nyp.org/centerforspecialstudies/index.html	HIV-AIDS clinical program at the Weill Cornell Campus of New-York Presbyterian Hospital
General	Gay Men’s Health Crisis (GMHC) http://www.gmhc.org/	“GMHC is the world’s first and leading provider of HIV/AIDS prevention, care and advocacy. Building on decades of dedication and expertise, we understand the reality of HIV/AIDS and empower a healthy life for all.”
Meal Service	God’s Love We Deliver https://www.glwd.org/	“God’s Love We Deliver is the New York City metropolitan area’s leading provider of nutritious, individually-tailored meals to people who are too sick to shop or cook for themselves.” Founded in 1985 when one woman began delivering food on her bicycle to a man dying from AIDS
Housing	Housing Works https://www.housingworks.org/	“Housing Works fights for funding and legislation to ensure that all people living with HIV/AIDS have access to quality housing, healthcare, HIV prevention, and treatment, among other lifesaving services.”
General	Latino Commission on AIDS https://www.latinoaids.org/index.php	“The Commission realizes its mission by spearheading health advocacy for Latinos, promoting HIV education, developing model prevention programs for high-risk communities, and by building capacity in community organizations. the Commission works to mobilize an effective community response to meet the health challenges and address the impact of HIV/AIDS.”
Meal Service	The Momentum Project https://www.nycservice.org/organizations	“The Momentum Project fosters health and wellness by providing nutritious communal meals and supportive services to any person in need in New York City, especially those living with HIV/AIDS or other chronic illness.”
Socialization	Services & Advocacy for GLBT Elders (SAGE) https://www.sageusa.org/	“SAGE is a national organization that advocates for public policy changes that address the needs of LGBT older people, provides education and technical assistance for aging providers and LGBT organizations through its National Resource Center on LGBT Aging, and cultural competence training through SAGECare.”
Adult Day Care	VillageCare http://www.villagecare.org/aids/day_treatment/	“VillageCare’s AIDS Adult Day Health Care program is a responsive and inclusive treatment setting providing adult day health care for persons living with HIV/AIDS. VillageCare assists in the management of the many challenging situations faced by persons living with HIV/AIDS, coordinating, where appropriate, with other VillageCare AIDS services.”

Clinical Implications.

• Providers for OPH should be more aware of their clients’ non-medical needs and offer more access to community-based supports and services.

• Bilingual providers and program facilitators can better reach those who may not speak English fluently, but wish to be involved in the community resources available to them.

• Programs for OPH should be created with the primary goals of socialization and helping develop social support networks.