“They're My Go-To People”: A Qualitative Study of Support Networks for People Recently Diagnosed With HIV in Queensland, Australia : Journal of the Association of Nurses in AIDS Care

Secondary Logo

Journal Logo

Research Article

“They're My Go-To People”: A Qualitative Study of Support Networks for People Recently Diagnosed With HIV in Queensland, Australia

Hollingdrake, Olivia PhD, MPH, GCert (Onc Nursing), BN, RN*; Lui, Chi-Wai PhD, MA, GCert (Higher Ed), BA; Dean, Judith A. PhD, MPHTM, BN, RN/Midwife, Centaur Fellow; Mutch, Allyson PhD, GCert (Higher Ed), BA (Hons); Howard, Chris; Fitzgerald, Lisa PhD, MA (Dis), DPH, GCert (Higher Ed), BA (Hons)

Author Information
Journal of the Association of Nurses in AIDS Care: November/December 2022 - Volume 33 - Issue 6 - p 624-637
doi: 10.1097/JNC.0000000000000351
  • Free

Abstract

People living with HIV (PLWH) continue to face a significant burden of social isolation and loneliness (Marziali et al., 2020). Financial insecurity, poor mental health, and small social networks contribute to social isolation (Marziali et al., 2020), which is intensified by an increased risk of comorbidities in older age and intersecting stigma and discrimination across the lifespan (Gardiner, 2018). Ensuring PLWH have access to long-term psychosocial and emotional support can reduce stigma, promote quality of life, and reduce long-term social isolation (Marziali et al., 2020; McDaid & Flowers, 2020).

Social support networks are critical for the health and well-being of PLWH (Emlet, 2006; Rosenfeld & Anderson, 2020) and have been identified as a key policy priority for supporting PLWH (NAPWHA, 2019). Social networks foster a sense of solidarity, belonging, and community, by promoting access to health services, supporting health literacy, and facilitating self-management (Gannon & Stacciarini, 2016; Poindexter & Shippy, 2008). Recently diagnosed PLWH can draw on established network resources and cultivate new social connections of support. Yet HIV diagnosis is often a time when support networks change as PLWH seek help and guidance for new challenges while also navigating the disruption to identity imposed by diagnosis (Hollingdrake et al., 2022a).

People living with HIV may be actively embedded within many formal or informal personal support networks (Gannon & Stacciarini, 2016; Hill et al., 2018). Personal networks are described as a collection of people that a person living with HIV relies on for support and information (NAPWHA, 2019). These networks are defined by several characteristics, including sharing information and resources, trust, empathy, respect, and reassurance (Bowlby, 2011; Cohen, 2004; Wellman & Wortley, 1990).

Within personal networks, people may draw on support provided by formal networks, which can include paid professionals through to trained volunteers, working within a defined scope of practice (Vassilev et al., 2013). Informal support, often provided by family and friends, is also a key component of personal networks and is generally underpinned by assistance given spontaneously, willingly, and for free (Becker, 2007). Such support is often founded on love, attachment, duty, or reciprocity (Bowlby, 2011; Essue et al., 2010). The resources exchanged through personal networks include information, practical support (such as transportation or financial aid), and emotional support, which makes a person feel loved, valued, and cared for (Berkman et al., 2000; House et al., 1998). However, HIV-related stigma and discrimination can impede access to formal and informal network support (Marziali et al., 2020; Relf et al., 2021).

As key members of personal support networks, health professionals are well-positioned to facilitate recently diagnosed PLWH in developing stronger support networks because they connect with PLWH at each stage of the care continuum, including diagnosis, treatment initiation, ongoing monitoring, and self-management (Flores et al., 2016; Hollingdrake et al., 2022a). These points of contact provide opportunities to establish supportive relationships while also assessing people's level of social connectedness, to determine whether emerging support needs are being met over time. Health professionals can provide support in particular situations while also facilitating PLWH to expand their support network (NAPWHA, 2019). To provide comprehensive HIV care that optimizes health and wellbeing among PLWH, health professionals must establish and capitalize on support networks as a resource for care provision (Vassilev et al., 2014).

To assist health professionals in this, we investigated the personal support networks of recently diagnosed PLWH in Queensland, Australia, to gain their perspective on who is important and when, after HIV diagnosis. This article highlights the characteristics and roles of their support networks at the time of HIV diagnosis and explores how and why the networks evolved during the transition to self-management. The centrality of emotional support over time is revealed, as is the impact of stigma and nondisclosure on network change. Specific recommendations to identify and build strong and sustainable networks are provided based on the findings.

Methods

This investigation is a substudy of a larger research project, the HIV Testing to Treatment Trajectory in Queensland (T2TQ) Study. The T2TQ Study is a qualitative longitudinal study that engaged 42 recently diagnosed PLWH (i.e., those receiving an initial diagnosis within the past five years) in in-depth interviews to explore their experiences of HIV testing, diagnosis, care engagement, and social support (Hollingdrake et al., 2022a). Ten of the T2TQ participants agreed to an additional interview that involved a social network mapping exercise (Hollingdrake et al., 2022b). This article draws on data from this mapping exercise.

Recruitment

Recruitment for the T2TQ study was conducted in collaboration with Queensland Positive People (QPP), a peer-led, community-based organization providing support and services for PLWH. Participants were recruited through QPP, and via advertising on social media, and in HIV testing clinics, sex on premises venues, primary care clinics and through snowballing sampling. Authors A. Mutch and L. Fitzgerald conducted semi-structured interviews annually at two time points between 2017 and 2019. Interviews explored participants' experiences of HIV testing and diagnosis, health service engagement, treatment, self-management, social relationships, disclosure, and support seeking. After completing the first round of interviews, participants were invited to join an additional interview to map their social network and explore their experiences of social support. Recruitment continued until data saturation was reached, which is the point at which additional participants added no new understanding to the topic. Ten participants agreed to the additional interview conducted by the author O. Hollingdrake.

Social Network Mapping

The social network mapping exercise lasted 45–120 min. Social network mapping involved a semi-structured interview that incorporated an egocentric (or person-centered) network mapping tool adapted from Tracy and Abell (1994) (Figure 1). This tool allowed participants to visually outline their personal support networks, highlight network members across different domains, and mark the role or importance of each member's support (Price, 2011).

F1
Figure 1.:
Social network mapping tool adapted from Tracy and Abell (1994).

During the mapping exercise, participants were asked to reflect on the six domains depicted on the map (e.g., family, household) and add the names of people or services that supported them as a person living with HIV. The mapping tool solicited information on three aspects of participant's support networks: the number of network members, the type of relationship shared, and the perceived importance of each network member. Some participants identified an institution or a group as a single network tie (e.g., a sexual health clinic, sports team, online group) without specifying the number of people under that label. In those cases, the institution or group was treated as a single network member. Participants were prompted to explain their relationship with individuals/services recorded on the map and the reasons for accessing them. Subsequent questions explored the nature and extent of support that participants received from each nominated network member (Price, 2011; Wellman et al., 1988). Networks depicted through the mapping were egocentric, that is, all ties connecting the network stemmed from the study participant who completed the exercise (Luke & Prusaczyk, 2022).

Participants populated two maps during the exercise. The first focused on their current support network and the second was a retrospective depiction of their support network at the time of diagnosis (between 1 and 5 years earlier). Comparison of the two maps highlighted changes across the personal support network between these two time points.

Visualization of Network Data

Using data collected from the mapping exercises, network diagrams were developed to visualize the size and composition of participants' support networks at the two time points. Figure 2 shows an example of these network diagrams. The central dot represents the participant, with network members (individuals or services) represented by labeled boxes. Colors were used to represent individuals/services in different domains, including families, friends, health professionals, peers (i.e., people with lived experience of HIV), and others (e.g., neighbors and local community). The distance from the participant and the thickness of the spoke are in proportion to the importance of the network member to the participant. The network members regarded as most important had the thickest spokes and were placed closest to the participant in the diagram.

F2
Figure 2.:
Example of a support network diagram.

Data Analysis

Inductive thematic analysis was used to explore data generated through the social network mapping exercises, including participants' accounts of receiving support from their network, types of support provided by different network members, and the changes in the network over time. Audio recordings and verbatim transcripts, network maps, and field notes of the mapping exercises were included in the analysis. Data analysis involved identifying recurring patterns and themes from the data, which was facilitated using NVivo™ software. Guided by the techniques outlined by Charmaz (2014), OH conducted the first round of coding, noting which coded data could be categorized together and providing names and descriptions of identified categories. Two other researchers (C.L. and L.F.) checked the coding and themes identified by examining the transcripts and discussing interpretations at weekly meetings, with disagreements resolved through discussion. A constant comparative method (Corbin & Strauss, 2015) was used to ensure all data coded under a particular theme reflected the same concept. The research team arrived at a final set of themes and interpretation through repeated discussions. Steps taken to ensure the rigor and trustworthiness of this research included collaborative review of analysis and coding among the research team, paying attention to unusual or outlying experiences, and checking our findings with existing peer-reviewed literature (Charmaz, 2014).

Ethical Considerations

The T2TQ Study received approval from The University of Queensland Human Research Ethics Committee (Ref: 2015001063). The principle of greater (and more meaningful) involvement of PLWH in research underpinned the design and implementation of this study (UNAIDS, 2007). QPP partnered in the research including author CH, who provided direction on the research aims and questions, and extensive input on study design, recruitment, and dissemination via regular meetings and email correspondence from the project's inception. This involvement ensured that the findings presented reflect the experiences of PLWH and that the research outcomes contribute to implementing policy and programs affecting PLWH (Fitzgerald et al., 2019).

Results

Participant Characteristics

Participants were aged 25–55 years and lived in a range of inner-city and regional Queensland locations. Nine participants identified as male and one as female. Eight participants identified as gay, one as bisexual, and one heterosexual. Eight were born in Australia and two overseas. Nine had established antiretroviral treatment regimens, were self-managing medications, and reported undetectable viral load. All were physically well, except one participant who self-reported HIV-related neurocognitive decline. All self-reported struggling to adjust to their HIV diagnosis and most continued to experience one or more broader mental health or social challenges at the time of the mapping exercise. These challenges included complex family dynamics (n = 7), drug or alcohol misuse (n = 5), stigma and discrimination (n = 9), and/or financial precarity (n = 6). Pseudonyms are used here to protect the anonymity of participants.

Attributes of Support Networks

Network mapping revealed that participants' support networks were diverse in size and scope, with the number of network members ranging from 1 to 32. All networks were unique to individual contexts and comprised a mix of professional and informal relationships. Formal or professional network members included physicians, nurses, psychologists, welfare agencies, counselors, community services, and peer organizations. The number of formal support network members was generally low, ranging from two to seven. Informal network members included families, friends, peers (i.e., other PLWH), local community members, and pets. The number of informal network members differed greatly between networks, some featuring only one or two and others featuring 20 or more.

Overview of Themes

The mapping exercise revealed five themes. Networks were generally small and close-knit at diagnosis, but the numbers of formal and informal members changed over time. Some networks grew, whereas others remained largely the same, shaped by changing support needs and experiences of stigma. Participants with sparse networks relied heavily on formal networks (i.e., health professionals) for psychosocial and emotional support, and mapping revealed the pivotal role that peers play within support networks. Finally, participants described excluding some health professionals from their support networks due to poor HIV literacy and judgmental attitudes.

Networks at Diagnosis

When asked about their support networks at diagnosis, most participants described tight knit networks featuring small numbers of professional and informal supporters. Figure 3 depicts Rowan's network at diagnosis, comprising three family members, two friends, two health professionals, and one peer.

F3
Figure 3.:
Rowan's support network at the time of diagnosis (left) and at the time of network mapping exercise (right).

Rowan's parents provided stability and solidarity, whereas his general practitioner and the sexual health clinic helped him manage his HIV. Formal support from health professionals to access treatment and information about HIV was important at diagnosis, as Jeremy articulated:

Everyone has their own questions. For me it's about access to treatment. All I cared about was how could I access treatment, treatment, and treatment. (Jeremy, aged 20–29 years, diagnosed 1–2 years ago)

Eight of 10 networks at diagnosis featured HIV-related health professionals for treatment access. Formal peer-led services (e.g., peer-navigators) and informal peer relationships (e.g., friends and acquaintances living with HIV) were other sources of treatment support and information frequently reported.

At diagnosis, participants also emphasized the importance of finding safe and nonjudgmental people to share their diagnosis with. Some participants found this support among family and friends, as Henry described:

She [my ex-wife] was the first person I told, I rang her and said this has happened and she offered to come straight over. Then we told the kids—and if I didn't have them, I wouldn't be here. So, they just rallied around me and “Anything you want Dad, what do you want me to do?” So, yeah, they got me through that, which is great because, yeah, I wouldn't be here. (Henry, aged 50–59 years, diagnosed 3–5 years ago)

Eight of 10 networks at HIV diagnosis incorporated peers because they were considered safe to disclose to, as Riley articulated:

I have one friend who is HIV positive and has been for a while. He lives in [another city]. Who I don't really see or speak to that often but when it [diagnosis] happened, I called him because he was the only other person that I knew. (Riley, aged 30–39 years, diagnosed 3–5 years ago)

Peer connections were most important when participants faced challenges disclosing their diagnosis to families or encountered barriers accessing health services. For example, Ryan had the smallest support network at diagnosis and was one of two participants whose networks only featured peers at this time (Figure 4).

F4
Figure 4.:
Ryan's support network at the time of diagnosis (left) and at the time of network mapping exercise (right).

Experiencing shock and shame at his diagnosis, Ryan was reluctant to disclose the news to family and friends. He was hesitant to attend the specialist appointments arranged for him, fearing being judged and questioned by health professionals about his lifestyle. Like Riley, Ryan turned to an acquaintance living with HIV for support, feeling safe knowing that he would be understood and not judged:

So, the person that I was hanging around with after I got diagnosed was positive... This person, basically, thank God. Even though they weren't doing the right things in life - but that's their journey. Anyway, thank God for them, like, they looked after me so to speak. (Ryan, aged 20–29 years, diagnosed 3–5 years ago)

Anticipated stigma, including fear of rejection and discrimination, seemed to keep most support networks small at diagnosis but also may have shaped the way networks evolved over time.

Networks—Changes over Time

By comparing the two networks generated by each participant at different time points, we learned how personal support networks evolved over time. Some networks expanded in size or in the diversity of members, others remained largely the same. The evolution of the networks was underpinned by two factors. First, the need for support to access HIV treatment and information became relatively less important as time went on, whereas psychosocial and emotional support remained vital. Second, the structure of the networks was shaped by the way participants managed disclosure and their experiences of stigma. Not all participants with small networks at the second time point described feeling isolated or unsupported; however, all participants discussed the ways that experiences of stigma could prevent network growth and leave some emotional support needs unmet.

The Importance of Emotional Support

Six participants' networks had grown and diversified since their HIV diagnosis, but the role of formal heath care providers had disappeared or been relegated to less important ties. This change likely reflected a decline in the need for HIV-related information and treatment support once participants recovered from the shock of diagnosis and became familiar with the treatment routine. The six expanding networks included more informal members whose acceptance, validation, solidarity, and shared respect were vital in helping participants overcome feelings of fear or shame. Elliot's network remained small, but nonetheless effective in meeting his psychosocial and emotional support needs (Figure 5):

My parents, they're one of the main anchors in my life. Once I knew that I had a steady ground on them I didn't really care what other people thought anymore. (Elliot, aged 20–29 years, diagnosed 3–5 years ago)

F5
Figure 5.:
Elliot's support network at the time of interview (left) and at the time of network mapping exercise (right). The Institute of Many is a web-based group providing support for PLWH. Note: PLWH = people living with HIV.

Ryan (Figure 4) reported a large and diverse network at the second time point. After isolating himself following his diagnosis, Ryan reestablished a strong network of family, close friends, and peers. Because Ryan's disclosures had generally been met with acceptance and reassurance of continued support, he felt secure within his network:

I’m at the point where I no longer need any support for living with HIV... I’ve realised there is nothing wrong with me … I fully take care of myself now… I'm a different person. (Ryan, aged 20–29 years, diagnosed 3–5 years ago)

Formal network members constituted smaller or less important components of these networks. For example, Dylan (Figure 6) reported a diverse network at both time points, which included the family and close friends aware of his diagnosis and with whom he felt accepted and loved:

I would say that my mum, my younger brother, his wife and one of my cousins—they’re my go-to people… it’s more a case of we are able to talk freely. (Dylan, aged 30–39 years, diagnosed 1–2 years ago)

F6
Figure 6.:
Dylan's support network at the time of diagnosis (left) and at the time of network mapping exercise (right).

At the second time point, Dylan described the health professionals who had provided him with vital support to navigate diagnosis, as simply “providing routine health-related services and information” (Dylan, aged 30–39 years, diagnosed 1–2 years ago). In contrast, participants with few informal network members continued to emphasize the importance of formal network members at the second time point because they offered some of their only opportunities to speak openly about HIV and meet their psychosocial and emotional support needs.

The Impact of (Non)disclosure and Stigma on Networks

Some participants had not disclosed their diagnosis to family and friends, or had experienced rejection or exclusion when disclosing, making them reluctant to disclose to family or friends again. For these participants, networks remained small. For example, Riley's key supporters remained the same over three years: his psychologist, general practitioner, sexual health clinic and the mental health unit he had spent time in around his diagnosis (Figure 7).

F7
Figure 7.:
Riley's support network at the time of diagnosis (left) and at the time of network mapping exercise (right).

Riley was reluctant to disclose his HIV diagnosis to his parents, siblings, and friends.

In the context of HIV, I receive zero support from my family because they don't know…I haven't told them, I don't think I ever will. It's been three years and I haven't disclosed, no one in my household knows. People think that the worst possible thing that could ever happen to someone is to get HIV, or to be HIV positive and that that means that people who are HIV positive are the worst possible people. That's what the general public thinks (Riley, aged 30–39 years, diagnosed 3–5 years ago)

For Riley, internalized HIV-related stigma underpinned his decision not to disclose, whereas for others, the stigma was more overt and its impact on social relationships more direct and explicit. Six participants described losing at least one important relationship, including family or friends, after disclosing their HIV diagnosis. This loss of support was usually experienced as an unspoken withdrawal by network members over time rather than outright rejection.

Participants had carefully considered the impact that disclosing their HIV status might have on the people important in their lives, realizing that once they disclosed their status, those closest to them could also be subjected to stigma. Participants who had not disclosed to family or friends were eager to make sure the latter did not discover the diagnosis through other channels, and this further reduced their willingness to disclose. As Ryan explained:

The thing that I was scared about the most, if I said something to someone and then it would come back to my family who knew nothing about my HIV (Ryan, aged 20–29 years, diagnosed 3–5 years ago).

The regulation of disclosure affected how our participants' support networks evolved. Participants who felt confident of receiving acceptance and support among informal circles had disclosed more widely and their networks grew, strengthened by the inclusion of accepting and nonjudgmental family, friends, or peers. In contrast, experiences of stigma, whether internalized or enacted, contributed to some networks remaining sparse over time.

Participants who had not disclosed their diagnosis among informal circles placed greater emphasis on the formal supporters within their networks because they provided outlets to acknowledge and speak openly about HIV. Rosemary described how the physicians and nurses at the sexual health clinic fulfilled this role:

I learned very quickly that HIV, and anything to do with it, is not a conversation that you can have with friends, because it's uncomfortable. I lost all my friends, all except two…. So, I compartmentalize that aspect of my life—keeping to people in medical professions. (Rosemary, aged 40–49 years, diagnosed 3–5 years ago)

Health professionals remained vital outlets for emotional and psychosocial support for participants whose networks remained sparse. The exception to this trend was those who had established long-term supportive connections with peers.

The Role of Peers

All participants had accessed some form of peer support and all perceived peers as nonjudgmental, and each support networks featured peers at either one or both time points. Figure 8 depicts Alex's support network.

F8
Figure 8.:
Alex's support network at the time of diagnosis (left) and at the time of network mapping exercise (right).

With older parents living in a different state (often considerable distance away) and few informal supporters to call on, health professionals featured strongly within Alex's network at diagnosis, including a psychologist, social worker, and two phone counseling services. Recognizing Alex's lack of informal support, a social worker referred Alex to the peer-based organization QPP. Figure 8 shows the way Alex's network changed during that five-year period. Health professionals became less important, and peers began to feature strongly within the network.

When I first got diagnosed, I was a bit shy about going to the [peer] barbeque, taking that first step. I forced myself and I went. I'm so glad I did. New friends, support network, the whole lot… We talk about things as well, and that helps. When you talk about our own gay side of things, and the HIV side of things—so it's a bit of both. Socialising as a gay person, and also talking about the HIV, what medication you're on, how's your CD4, and… it all helps… We're a good group of friends now that support each other.... Yeah, and we're doing it in a relaxed environment. We might be eating dinner or something and it'll just come out, they'll start talking (Alex, diagnosed 3–5 years ago).

Despite initial shyness to reach out, connecting with peers offered Alex a means to expand his otherwise sparse informal support network, fostering positive integration and promoting a sense of inclusion and belonging. Other participants found this psychosocial and emotional support through web‐based peer communities, including “The Institute of Many” (TIM), a large online group supporting PLWH:

I felt like “the only gay in the village” in my town! I really liked TIM, because I could just read people's stories. Even though I don't know them, I felt like I was part of that community and could talk to them (Dylan, diagnosed 1–2 years ago).

Sparse support networks appeared to be strengthened by introducing peers to provide the right support at the right time. Peers not only provided early support to access HIV information and treatment but they also offered safe options to talk openly about the ongoing experience of living with HIV.

The Role of Health Professionals

Health professionals featured in every participant's support network because they met specific health-related support needs; however, establishing a trusted patient–provider relationship was an essential prerequisite for network inclusion. Most health professionals in the networks supported HIV literacy, facilitated HIV treatment access, and attended to participants' physical and mental health concerns. Seven networks in this study featured mental health professionals supporting the management of depression and anxiety. Health professionals also provided advocacy, access to financial assistance, and resources to support HIV self-management.

Despite these numerous positive roles, some participants discussed the exclusion of health professionals from their support networks, highlighting experiences of stigma and judgmental attitudes in health service environments. Most participants described feeling scrutinized when disclosing their diagnosis within health care settings. Health professionals with poor levels of HIV literacy were not included in participant's support networks. Poor HIV literacy among health professionals meant participants often felt positioned as an educator, rather than a service recipient, and had to explain the science behind undetectable viral loads and HIV transmission risk. Kyle expressed frustration with these interactions:

They never ask you do you have HIV; they always ask you do you have HIV/AIDS? Do you realise that every time you ask that question that person feels a little bit of guilt or anger or shame and really does not want to be answering that question for the rest of their life, knowing that they're going to have 40 years and an undetectable viral load? (Kyle, aged 30–37 years, diagnosed 3–5 years ago)

As Kyle observed, interactions with health care professionals regularly involved discussions of uncomfortable topics. During these discussions, participants formed impressions about whether health professionals were supportive or not. Thus, participants excluded overly curious and insensitive health professionals from their networks, and those who probed unnecessarily for details about past sexual or risk-taking behaviors that were unrelated to their reason for attendance. As Elliot remarked: “You can just feel the stigma and judgment in their tone, which doesn't make it a really mentally healthy experience for you.” (Elliot, aged 20–29 years, diagnosed 1–2 years ago). Ryan expressed similar discomfort: “Any ounce of judgement when you're in that vulnerable state is just a big no—no that's it for me, I'm outta here” (Ryan, aged 20–29 years, diagnosed 3–5 years ago). Some health care professionals disclosed participants' HIV status against their wishes and, whether deliberate or inadvertent, were excluded from their support networks. Fiona recounted her experience of unwanted disclosure during a long stay on a mental health unit where she encountered unfamiliar staff each day:

I had nurses come out in front of rooms full of patients and go, “Here's your HIV medication”, which they had no right to do. You have maybe 20 nurses there and when it comes to medicine time, they're like, “What's this medication for? Tell me. What's this for?” So, I had to disclose to all of these different nurses, in front of all of these people. (Fiona, aged 30–39 years, diagnosed 2–3 years ago).

Health professionals' words and actions could quickly undermine participants' efforts to manage disclosures and stigma. Those providers who exacerbated feelings of shame and guilt among the participants were unanimously considered unsupportive and excluded from their networks.

In contrast, health professionals who demonstrated sensitivity, respect, and confidentiality were included within the participants' support networks. For example, Ryan, who had avoided all health services for six months after his diagnosis, described how a specialist physician convinced him to engage with treatment because she expressed compassion and acceptance during his first appointment with her: “…not an ounce of judgement, she genuinely cared for the welfare of another human being”. The specialist sought to empower Ryan and involve him in treatment decisions: “She made it my choice from the beginning.” Because of this positive start, Ryan continued to engage with treatment long-term; “I can go six monthly, but I sometimes go every three months to go get my bloods done and have a chat and yeah, just make sure I'm looking after myself” (Ryan, aged 20–29 years, diagnosed 3–5 years ago).

The clinical and informational support provided by health professionals was well-received when it was delivered in a nonjudgmental, sensitive, and confidential manner. With this combination, health professionals formed a vital component of HIV support networks; without it, they were left out.

Discussion

The support networks described in this article are unique to individual contexts and remain dynamic, but they all incorporate people who are important in the lives of PLWH. Small and tight-knit networks at the time of diagnosis are crucial, not only for access to information and treatment but also to help manage the disruption and uncertainty of the diagnosis. These findings are consistent with research examining the support networks of people living with mental illness, which shows that people draw on smaller networks for support during times of crisis than those they access in everyday life (Walker et al., 2018). A small yet strong network can provide safety and access to health care, which are essential to navigate an HIV diagnosis. Beyond diagnosis, networks evolve as PLWH seek relationships from which to draw emotional and psychosocial support while learning to live with HIV (Norberg et al., 2019). Networks of support characterized by nonjudgmental attitudes, acceptance, and validation of self-worth remain critical in the lives of PLWH after diagnosis.

Mapping social support networks at two time points reveals that the regulation of disclosure and experiences of stigma also shape how these vital networks change over time. Both informal and formal supporters play a vital role in mitigating stigma to foster strong and sustainable networks (Hill et al., 2018; Norberg et al., 2019). In the chronic disease literature, informal supporters such as family, friends, and peers are often considered in providing practical help with treatments, transportation, and activities of daily living (Becker, 2007; Vassilev et al., 2013). Yet the vital role of informal networks in combating stigma for PLWH, which is demonstrated in our findings, should not be overlooked. The psychosocial and emotional support of family, friends, and peers creates exponential opportunities for meaningful social connection, listening, and nonjudgmental concern. This type of support fosters trust, self-validation, and a sense of belonging within communities (Berkman et al., 2000; Cohen, 2004). This psychosocial and emotional support, combined with good clinical care to achieve an undetectable viral load, are powerful in reducing stigma (Rhodes et al., 2019).

Receiving an HIV diagnosis is a disruptive time when PLWH are likely to encounter a range of health professionals. Despite being essential for care provision, our findings indicate that health professionals are not always accepted within support networks, but those who demonstrate respect, empathy, and responsiveness are likely to be seen as vital members. Health professionals must establish a supportive relationship with patients and assess each person's level of social connectedness. These initial points of contact with health professionals provide opportunities to help PLWH connect with new sources of support for unmet needs.

Our study reinforces existing research demonstrating that PLWH who have limited informal support networks tend to continue relying on health professionals to meet their long-term emotional and psychosocial support needs (Rhodes et al., 2019). It is important that health professionals assess whether patients have access to network support, and work with isolated PLWH to strengthen their networks for long-term support (Hines et al., 2020; Hollingdrake et al., 2022a). As the time and resources available for care provision within service environments become increasingly sparse, this imperative grows more urgent (Dean et al., 2014).

To support PLWH to build strong, flexible, and sustained support networks, health professionals must consider ways of helping PLWH build on the number and quality of their informal supports. Facilitating opportunities for peer-to-peer connection and learning at key points across the HIV care continuum are core activities that health professionals can undertake to help PLWH build stronger networks and reduce the negative impacts of long-term social isolation.

Our findings align with previous studies demonstrating that peers are fundamental members of support networks for many PLWH because, within peer relationships, stigma has far less power (Hill et al., 2018; Kebede, 2012). Peer relationships are distinct within the support networks of PLWH because they can be regarded as professionals (formal network members), friends (informal network members), or a mix of the two (McLeish & Redshaw, 2016). Peers with specific workforce training can be accessed via formal channels such as peer-led community providers. Peer-mentoring and peer-navigation services deliver targeted support for specific needs around diagnosis, including information and access to treatment (Queensland Positive People, 2021). Connecting with formal peer-led services can also afford opportunities for recently diagnosed PLWH to connect with others through social activities and expand their informal networks for short- or long-term psychosocial and emotional support (Raker et al., 2020).

Unlike many other health services, peer-led services foster an environment where PLWH can easily meet (Poindexter & Shippy, 2008). In addition, the emergence of online networks, particularly since the onset of COVID-19, has changed the ways people interact with peers to access HIV-related support and form new connections (Griffiths et al., 2012; Mo & Coulson, 2014; The Institute of Many, 2021). Health professionals providing care for PLWH must remain aware of local face-to-face and online peer services and be proactive with referrals to them. It is imperative that recently diagnosed PLWH have diverse, flexible, and ongoing opportunities to access peer connections, strengthen their support networks, and meet changing needs.

Strengths and Limitations

This study uses novel qualitative social network mapping methods to provide insight into the characteristics and evolution of support networks of PLWH; however, some limitations must be acknowledged. The mapping of support networks at diagnosis from memory may be less reliable and subject to recall bias. Although the number of participants is small, and is unlikely to cover the full spectrum of experiences of PLWH from diverse backgrounds and cultural contexts, it does align with the study's aim to gain in-depth insight into social network support for HIV from the perspective of PLWH. All participants in this study reported being single at the time of interview; therefore, the role of long-term partners within support networks was underexplored. Despite these limitations, the mapping and in-depth examination of support networks from the perspective of recently diagnosed PLWH provide an opportunity to better understand and capitalize on this important resource to strengthen care for PLWH.

Conclusion and Recommendations for Future Research

Investigating the social support networks of recently diagnosed PLWH helps highlight the participants as fundamentally social beings, who access resources that exist beyond clinical spaces. Health professionals must recognize the role formal and informal networks play in care and support of the individual to enhance their health and well-being. Although some PLWH have robust and diverse support networks, others remain socially isolated and with limited resources, largely due to stigma and fears of disclosure. Adopting a social network perspective, this study provides knowledge to inform practice by highlighting the value of a nonjudgmental attitude and trust that must accompany any attempt to provide clinical care for PLWH. Enabling diverse and ongoing peer connections for all is an important step to strengthen existing support networks. However, further research into how health professionals can facilitate PLWH to build diverse and inclusive support networks is needed.

Disclosures

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

Author Contributions

All authors on this paper meet the four criteria for authorship as identified by the International Committee of Medical Journal Editors (ICMJE); all authors have contributed to the conception and design of the study, drafted or have been involved in revising this manuscript, reviewed the final version of this manuscript before submission, and agreed to be accountable for all aspects of the work. Specifically, using the CRediT taxonomy, the contribution of each author is as follows: Conceptualization & Methodology: O. Hollingdrake, C.-W. Lui, L. Fitzgerald, and C. Howard; Formal Analysis: O. Hollingdrake and L. Fitzgerald; Funding Acquisition: L. Fitzgerald; Investigation: O. Hollingdrake, A. Mutch and L. Fitzgerald; Project Administration: O. Hollingdrake; Supervision: C.-W. Lui, A. Mutch, J. A. Dean, C. Howard, and L. Fitzgerald; Validation: O. Hollingdrake, C.-W. Lui, J. A. Dean, and C. Howard; Writing—original draft: O. Hollingdrake; Writing—revising: O. Hollingdrake, C.-W. Lui, A. Mutch, J. A. Dean, C. Howard, and L. Fitzgerald.

Acknowledgments

This study was funded by a grant from the HIV Foundation Queensland (Project ID: 2015-4, PI: Lisa Fitzgerald). Olivia Hollingdrake received an Australian Postgraduate Award including a Career Development Scholarship Extension.

Key Considerations

  • Social network support is critical for people living with HIV (PLWH) to maintain good quality of life.
  • The evolution of support networks is shaped by disclosure challenge and experiences of support and stigma.
  • Health professionals have an important role to play in the support networks of PLWH and can only do so when they are nonjudgmental.
  • People living with HIV with sparse support network rely substantially on health professionals for long-term psychosocial and emotional support.
  • Health professionals must assess the support networks of recently diagnosed PLWH and identify those experiencing social isolation.
  • Facilitating peer-to-peer connection enables PLWH to expand and strengthen their support networks and to reduce long-term isolation.

References

Becker S. (2007). Global perspectives on children' s unpaid caregiving in the family: Research and policy on 'young carers' in the UK, Australia, the USA and sub-Saharan Africa [Review]. Global Social Policy, 7(1), 23-50. https://doi.org/10.1177/1468018107073892
Berkman L. F., Glass T., Brissette I., Seeman T. E. (2000). From social integration to health: Durkheim in the new millennium Social Science and Medicine, 51(6), 843-857. https://doi.org/10.1016/S0277-9536(00)00065-4
Bowlby S. (2011). Friendship, co-presence and care: neglected spaces. Social and Cultural Geography, 12(6), 605-622. https://doi.org/10.1080/14649365.2011.601264
Charmaz K. (2014). Constructing grounded theory (2nd ed.). Sage.
Cohen S. (2004). Social relationships and health. American Psychologist, 59(8), 676-730.
Corbin J. M., Strauss A. L. (2015). Basics of qualitative research : techniques and procedures for developing grounded theory (4th ed.). Thousand Oaks, CA: SAGE Publications.
Dean J., Staunton S., Lambert S., Batch M., Fitzgerald W., Leamy J. (2014). The evolution of HIV education for nurses in Australia. Journal of the Association of Nurses in AIDS Care, 25(5), 458-464. https://doi.org/10.1016/j.jana.2013.07.007
Emlet C. A. (2006). An Examination of the Social Networks and Social Isolation in Older and Younger Adults Living with HIV/AIDS. Health Soc Work, 31(4), 299-308.
Essue B. M., Jowsey T., Jeon Y. H., Mirzaei M., Pearce-Brown C. L., Aspin C., Usherwood T. P. (2010). Informal care and the self-management partnership: Implications for Australian health policy and practice. Australian Health Review, 34(4), 414-422. https://doi.org/10.1071/AH09795
Fitzgerald L., Mutch A., Herron L. (2019). Responding to HIV/AIDS: Mobilisation through partnerships in a public health crisis. In Leuetjens J., Mintrom M., t Hart P. (Eds.), Successful Public Policy: Lessons from Australia and New Zealand (pp. 29-58): ANU Press.
Flores D., Leblanc N., Barroso J. (2016). Enroling and retaining human immunodeficiency virus (HIV) patients in their care: A metasynthesis of qualitative studies. Int J Nurs Stud, 62, 126-136. https://doi.org/10.1016/j.ijnurstu.2016.07.016
Gannon B. N., Stacciarini J. M. (2016, Jul-Aug). Review of the Literature: A Rural-Urban Comparison of Social Networks of Older Adults Living With HIV. The Journal of the Association of Nurses in AIDS Care, 27(4), 419-429. https://doi.org/10.1016/j.jana.2016.02.004
Gardiner B. (2018). Grit and stigma: Gay men ageing with HIV in regional Queensland. Journal of Sociology, 54(2), 214-225. https://doi.org/10.1177/1440783318766162
Griffiths F., Cave J., Boardman F., Ren J., Pawlikowska T., Ball R., Clarke A., Cohen A. (2012). Social networks—The future for health care delivery. Social Science and Medicine, 75(12), 2233-2241. https://doi.org/10.1016/j.socscimed.2012.08.023
Hill M., Huff A., Chumbler N. (2018). Variation in Networks and Forms of Support for Care‐Seeking Across the HIV Care Continuum in the Rural Southeastern United States. The Journal of Rural Health, 34(1), 71-79. https://doi.org/10.1111/jrh.12238
Hines D. D., Draucker C. B., Habermann B. (2020). My Whole World Changed: A Qualitative Exploration of the Coping Experiences of Transgender Women After an HIV Diagnosis. The Journal of the Association of Nurses in AIDS Care, 31(6), 654. https://doi.org/10.1097/JNC.0000000000000200
Hollingdrake O., Dean J., Mutch A., Lui C.-W., Howard C., Fitzgerald L. (2022a). Understanding the Social and Emotional Dimensions of HIV Self-Management: A Qualitative Study of Newly Diagnosed People Living with HIV in Queensland, Australia. The Journal of the Association of Nurses in AIDS Care, 33(2), 106-117. https://doi.org/10.1097/JNC.0000000000000272
Hollingdrake O., Howard C., Mutch A., Lui C.-W., Mutch A., Dean J.A, Fitzgerald L (2022). HIV health literacy beyond the biomedical model: an innovative visual learning tool to highlight the psychosocial complexities of care. AIDS Care. https://doi.org/10.1080/09540121.2022.2085866
House J. S., Umberson D., Landis K. R. (1998). Structures and Processes of Social Support. Annual Review of Sociology, 14, 293-318. http://www.jstor.org/stable/2083320
Kebede W. (2012). Women, Social Networks, and HIV. Journal of community practice, 20(1-2), 52-68. https://doi.org/10.1080/10705422.2012.648077
Luke D. A., Prusaczyk B. (2022). Network Analysis: The Social Bridge to Health. In Scrimshaw S. C., Lane S. D., Rubinstein R. A., Fisher J. (Eds.), The SAGE Handbook of Social Studies in Health and Medicine. Thousand Oaks, CA: SAGE Publications.
Marziali M. E., McLinden T., Card K. G., Closson K., Wang L., Trigg J., Salters K., Lima V. D., Parashar S., Hogg R. S. (2020). Social Isolation and Mortality Among People Living with HIV in British Columbia, Canada. AIDS and Behavior, 25(2), 377–388. https://doi.org/10.1007/s10461-020-03000-2
McDaid L., Flowers P. (2020, 2020./10/08/). Pandemics have psychosocial and sociocultural burdens. The Lancet HIV. https://doi.org/https://doi.org/10.1016/S2352-3018(20)30239-3
McLeish J., Redshaw M. (2016, Jun 20). 'We have beaten HIV a bit': a qualitative study of experiences of peer support during pregnancy with an HIV Mentor Mother project in England. BMJ Open, 6(6), e011499. https://doi.org/10.1136/bmjopen-2016-011499
Mo P. K. H., Coulson N. S. (2014). Are online support groups always beneficial? A qualitative exploration of the empowering and disempowering processes of participation within HIV/AIDS-related online support groups. Int J Nurs Stud, 51(7), 983-993. https://doi.org/10.1016/j.ijnurstu.2013.11.006
NAPWHA. (2019). National Association of People with HIV Australia: National Stigma and Resilience Framework. https://napwha.org.au/wp-content/uploads/2019/04/NAPWHA-Stigma-and-Resilience-Framework.pdf
Norberg A., Nelson J., Holly C., Jewell S. T., Lieggi M., Salmond S. (2019). Experiences of HIV-infected adults and healthcare providers with healthcare delivery practices that influence engagement in US primary healthcare settings: a qualitative systematic review. JBI Database Of Systematic Reviews And Implementation Reports, 17(6), 1154-1228. https://doi.org/10.11124/JBISRIR-2017-003756
Poindexter C., Shippy R. A. (2008). Networks of older New Yorkers with HIV: fragility, resilience, and transformation. AIDS Patient Care STDS, 22(9), 723. https://doi.org/10.1089/apc.2007.0260
Price B. (2011). How to map a patient's social support network. Nursing older people, 23(2), 28-35.
Queensland Positive People. (2021). Queensland Positive People: Inclusive, Innovative HIV services. Retrieved from August 11 https://www.qpp.org.au.
Raker A. R., Feldman M. B., Hile S. J., Chandraratna S. (2020). Positive Side Effects: The Perceived Health and Psychosocial Benefits of Delivering an HIV Self-Management Program for Peer Educators Living With HIV. Journal of the Association of Nurses in AIDS Care, 31(5), 517-525. https://journals.lww.com/janac/Fulltext/2020/10000/Positive_Side_Effects__The_Perceived_Health_and.4.aspx
Relf M. V., L Holzemer W., Holt L., Nyblade L., Ellis Caiola C. (2021). A Review of the State of the Science of HIV and Stigma: Context, Conceptualization, Measurement, Interventions, Gaps, and Future Priorities. The Journal of the Association of Nurses in AIDS Care, 32(3), 392-407. https://doi.org/10.1097/JNC.0000000000000237
Rhodes T., Egede S., Grenfell P., Paparini S., Duff C. (2019). The social life of HIV care: On the making of 'care beyond the virus'. Biosocieties, 14(3), 321-344. https://doi.org/10.1057/s41292-018-0129-9
Rosenfeld D., Anderson J. (2020). 'The own' and 'the wise' as social support for older people living with HIV in the United Kingdom. Ageing and society, 40(1), 188-204. https://doi.org/10.1017/S0144686X18000909
The Institute of Many. (2021). Welcome to HIV in the 21st Century. Retrieved August 22 from.https://theinstituteofmany.org/
Tracy E. M., Abell N. (1994). Social network map: some further refinements on administration. Social Work Research, 18(1), 56-60. https://www.scopus.com/inward/record.uri?eid=2-s2.0-0028398249&partnerID=40&md5=d356ca357401e5bfbde6580569a540d2
UNAIDS. (2007). UNAIDS Policy Brief: The Greater Involvement of People Living with HIV (GIPA).http://data.unaids.org/pub/briefingnote/2007/jc1299_policy_brief_gipa.pdf
Vassilev I., Rogers A., Blickem C., Brooks H., Kapadia D., Kennedy A., Sanders C., Kirk S., Reeves D. (2013). Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities. PLoS One, 8(4), e59723. https://doi.org/10.1371/journal.pone.0059723
Vassilev I., Rogers A., Kennedy A., Koetsenruijter J. (2014). The influence of social networks on self-management support: A metasynthesis. BMC Public Health, 14(1), Article 719. https://doi.org/10.1186/1471-2458-14-719
Walker S., Kennedy A., Vassilev I., Rogers A. (2018). How do people with long‐term mental health problems negotiate relationships with network members at times of crisis? Health Expectations, 21(1), 336-346. https://doi.org/10.1111/hex.12620
Wellman B., Carrington P., Hall A. (1988). Networks as personal communities. In Wellman B., Berkowitz S. (Eds.), Social structures : a network approach (pp. 130-184). : Cambridge U.P.
Wellman B., Wortley S. (1990). Different Strokes from Different Folks: Community Ties and Social Support. American Journal of Sociology, 96(3), 558-588. https://doi.org/10.1086/229572
Keywords:

HIV; network mapping; social networks; support; stigma; qualitative methods

Copyright © 2022 Association of Nurses in AIDS Care