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Evidence Update: Quality of life among people living with HIV in WA| July 3, 2023 |
Each Evidence Update provides an overview of existing research focused on a topic of interest relevant to sexual health and/or blood-borne viruses. This Evidence Update explores quality of life among people living with HIV.
Why is this issue important?
Around 30,000 people are living with HIV in Australia (King et al. 2022) of which more than 2000 are estimated to live in Western Australia (WA) (WA Department of Health, unpublished data). While treatments have transformed the experience of living with HIV for many, quality of life (QoL) may be overlooked (Lazarus et al., 2016). QoL is a multidimensional concept that considers physical, mental, emotional, functional and social factors that contribute to an individual’s perceived wellbeing (de Wit & Hajos, 2013). The WA HIV Strategy 2019-2023 set a goal of ensuring that "at least 75% of people with HIV report good quality of life" by the end of 2023 (Department of Health, 2019).
What we did
We undertook a rapid literature review to determine what is currently known about living with HIV in WA. Three databases were searched for peer-reviewed literature, and Google and Google Scholar were searched for grey literature. Any literature published since the first reported HIV notifications were considered for inclusion. Studies were included if they contained data on: (1) the demographic or clinical profile of people living with HIV (PLHIV) in WA; (2) or the physical, mental, emotional, functional and social factors affecting the perceived wellbeing of PLHIV in WA.
What we found
We located sixteen studies. Almost half were published at least a decade ago and consequently may not reflect the contemporary experiences of PLHIV in WA. WA studies predominantly reported the experiences of men, specifically men who are gay, bisexual or have sex with other men. Despite the limited body of WA research, the available data are consistent with the findings of studies conducted in other Australian jurisdictions.
We found that the lived experience of HIV is influenced by factors including gender, age, time since diagnosis, rural location, and cultural background. Studies suggested that PLHIV in WA are conscious of the potential for stigma and discrimination, which some individuals had directly experienced. As a result of stigma, some individuals were selective about the extent to which they disclosed their HIV status which, in turn, affected feelings of social connectedness. Findings suggest that in addition to addressing physical health issues related to an HIV diagnosis, holistic models of care should include services addressing other commonly reported concerns including mental health, alcohol and other drug use, sexual connectedness, financial security, and other social determinants of health.
The following themes emerged from the included studies.
Medication side effects and comorbidities can affect QoL
Good general health was associated with a perceived high QoL in a national study (1). Reported QoL could be impacted by treatment side effects, such as fatigue, diarrhea, skin itching, sleep issues, and gastrointestinal symptoms (2, 3). The presence of physical side effects was associated with higher depression scores and lower treatment concordance (2). QoL was also affected by the presence of comorbidities (1, 3, 6). These findings point to the need for integrated physical and mental health responses to the management of HIV, and careful monitoring and management of side effects to support treatment concordance.
Mental health and QoL are closely linked
Mental health issues, including depression and anxiety were commonly reported and have been shown to affect QoL for PLHIV (1, 6, 9-11). Several studies suggested that mental health issues could affect PLHIV who perceived themselves to be otherwise physically healthy (10, 14). Mental health could be affected by the initial distress associated with diagnosis (3, 5, 7), or broader experiences or concerns around stigma and discrimination (3, 6, 7, 14).
As a result of stigma, some people were selective about the extent to which they disclosed their HIV status which, in turn, impacted on feelings of social connectedness (3, 5, 6, 9, 15, 16). Specific issues around disclosure were reported for people living in rural or remote towns (7), people from Indigenous backgrounds (9), and migrants without permanent residence or citizenship (1, 6).
Social connection strengthens QoL
Strong social connections and living with a partner or spouse were found to be influential factors associated with a higher QoL in a national study (1). Social support was valued (1, 4, 5), and there was evidence of some engagement with peer-support services (4). Intervention research suggests peer-facilitated programmes may have a positive impact on social and emotional indicators relating to QoL (13). Online support communities were used and viewed favourably with some evidence of impact on QoL (1, 5, 12, 13). However, it should be noted that challenges in connecting with other PLHIV and difficulties in meeting others in similar situations, such as age, gender, or length of diagnosis do occur (1, 5, 12). In particular, women and Indigenous Australian participants emphasised the importance of being matched with peers who could understand their intersecting identities, adding to the significance of peer-support in addressing their unique needs (12).
Sexual wellbeing is an important part of QoL and extends beyond a narrow STI focus
Participants in three studies reported a reduction in sexual spontaneity, performance or activity associated with their HIV diagnosis, and/or concerns about potential rejection from sexual or relationship partners, leading to feelings of sexual exclusion (3, 4, 5).
The review suggests that there is a dearth of contemporary research on the QoL experiences and needs of PLHIV in WA. While the available literature points to the need for holistic service models which address physical health, mental health, and social connectedness, there is little available published data on whether these needs are currently being met for the diverse cross-section of PLHIV in WA. SiREN is currently completing a qualitative research project to fill this gap. PLHIV who are interested in participating in the research are welcome to contact Sophie Haywood or Dr. Roanna Lobo.
Journal articles and reports
The following are summaries for each article included in the review. Please click here for the full reference list.
1. HIV Futures 10: Quality of life among people living with HIV in Australia. HIV Futures is a research series about the health and wellbeing of PLHIV in Australia since 1997. In this study iteration, data were collected from May 2021 to July 2022 (n= 816). Participants completed a self-report questionnaire, comprising questions related to QoL. Additional interviews with Asian-born gay and bisexual men (and other MSM) living with HIV (n= 8) and with advocates and educators who work with these communities (n=10) were conducted. Over half (51%) of participants reported their overall wellbeing as good or excellent. The majority of participants (72%) perceived their QoL as good. Some factors associated with high QoL included higher income, absence of recent financial stress, residing in inner city areas, better general health, stronger social connections and living with a partner or spouse. Uncertainty and anxiety related to the migration process, particularly awaiting visa outcomes, can hinder individuals’ ability to plan for the future, build a career and establish social networks which are key features of QoL to ensure a sense of connection, social support and community and financial security.
2. Evidence-based, multifactorial approach to addressing non-adherence to antiretroviral therapy and improving standards of care. This study reports on results from the WA HIV Cohort Study, which aimed to understand the scope and determinants that contribute to ART concordance in patients attending the ambulatory HIV Service at Royal Perth Hospital. A survey was administered, comprising of instruments devised by the US Adult AIDS Clinical Trials Group: the self-report baseline concordance, follow-up and side-effect questionnaires to patients (n= 247) at two time-points between September 2002 and February 2003. At baseline, data were collected from patients (n= 162). At follow-up, data were collected from patients (n= 201) including 100 from baseline. A monitoring/feedback method was incorporated into routine clinic visits among patients who provided a positive response to the survey. An improvement was observed in medication concordance in the patient cohort implementation of the Study. Side effects of the medication were cited as reasons for non-concordance in about 20% of respondents. This decision was strongly correlated with experiencing fatigue and skin itching. Patients who reported any side-effect, especially fatigue, had significantly higher scores on the depression indicator scale. This has implications for ART concordance to achieve viral suppression and recovery of functional immunity in individuals living with HIV.
3. HIV-related stigma and physical symptoms have a persistent influence on health-related quality of life in Australians with HIV infection. The study aimed to better understand the major factors impacting the health-related quality of life (HRQoL) among the WA cohort who participated in the development and validation of a tool assessing HRQoL of persons living with HIV and AIDS. Data were collected from interviews with adults (n= 15) attending the Immunology Clinic at Royal Perth Hospital, and from survey respondents (n= 102). An influence of HIV on HRQoL across the spectrum of biological, social, and psychological domains was observed. People reporting unemployment, depression, and a higher frequency of symptoms, particularly those impacting negatively on sexual expression, scored a lower QoL overall, independent of other factors and regardless of ART status. Psychological distress was compounded by poor physical health which was associated with unemployment and depression. Context-specific interventions are recommended to address stigma-related distress, public perceptions of HIV, and social and psychological impact.
4. Informing the development of an online self-management program for men living with HIV: a needs assessment. The study involved a needs assessment to inform the development of an online self-management program for men living with HIV. Data were collected from focus groups with men living with HIV (n= 11) and service providers working in the area of HIV (n= 11), and a survey assessing the QoL of men living with HIV (n= 72) compared to Australian normative data. HIV was found to have a significant impact on participants lives and resulted in changes in priorities and willingness to engage in activities and roles. Lower scores indicated participants experience significantly lower QoL when compared with Australian normative data, particularly in those domains concerned with the social and emotional aspects of QoL. Ongoing struggles with psychosocial issues, experiences of stigma, and disclosure-related stress and uncertainty were discussed. Social support was valued. In response to these findings, an intervention called “Positive Outlook” has been developed.
5. Experiences after HIV diagnosis: Report on findings from a qualitative cohort study of people recently diagnosed with HIV. The RISE study explored experiences of HIV diagnosis, resulting changes, and the risk factors associated with HIV infection. Interviews were conducted (n= 28) to explore experiences. Follow-up interviews were held (n= 17) to examine the impacts of COVID-19. Shock and disbelief was the most commonly reported reaction. Participation in peer navigation services and peer-support programs was reported, which enabled social connection. However, some participants did not feel properly matched to their peers in terms of social and cultural aspects. Concerns regarding potential rejection from sexual or relationship partners, career prospects, living/working in other countries, becoming a parent, and accessing and controlling their health-related data were commonly reported. These findings have utility for people working in peer-based HIV support, research, policy, and clinical practice.
6. The impact of visa status and Medicare eligibility on people diagnosed with HIV in Western Australia: a qualitative report. This study explored the impact of HIV diagnosis on visa holders, the implications that temporary resident status has for individuals and their families, and the experiences and outcomes of ART in those without Medicare access. Data were collected from interviews with adult migrants (n= 22) attending an HIV Clinic between April 2010 and August 2011, case notes, and a self-report questionnaire. Comorbidities such as tuberculosis and hepatitis B were identified in one out of 22 patients. One patient was diagnosed and treated for depression, while another patient self-reported experiencing depression. Impact on work prospects, stigma, fear, prejudice/discrimination towards HIV, and distress related to fear of death and unwillingly transmitting HIV unknowingly to others were commonly reported. Disclosure to others was uncommon. ART concordance in Medicare-ineligible individuals was excellent despite limited access to treatment.
7. By virtue of circumstance: HIV/AIDS in mobile and rural populations in Western Australia, an ethnographic study. This study examined the experiences of managing HIV in a rural or remote environment in WA, the effect of visa status in mediating experiences of HIV, and aspects of ART concordance that influence treatment outcomes. Data were collected from interviews (n= 19) with adults living with HIV who lived or worked in regional areas of WA and who had at some stage been ineligible for Medicare. Study findings revealed that upon receiving a diagnosis of HIV, reactions of shock and concern at infecting their family members were common. Furthermore, disclosure of HIV serostatus was a difficult decision, particularly for those residing in small country towns as many participants anticipated negative reactions from others upon the disclosure of their HIV status. Study findings also indicated that access to allied health services for HIV care was limited in country regions and some participants noted concerns related to privacy and suitability of services for heterosexual individuals.
8. Use of alcohol, nicotine and other drugs in the Western Australian HIV Cohort study. This study aimed to ascertain the prevalence of substance use among PLHIV in the WA Cohort Study to inform the implementation of interventions in a hospital-based setting that provides primary preventive care to PLHIV. Data were collected from a self-report questionnaire administered at two-time points to patients attending Royal Perth Hospital. The first questionnaire assessed alcohol and drug use (n= 152); the second questionnaire assessed smoking habits, and help seeking behaviour (n= 186). The results indicate a high prevalence of substance use in the cohort and a pattern of high-risk behaviour in multi-substance use and heavy sessional drinking. Over half (73%) of participants reported alcohol consumption, with an average of seven drinks per week. Of these, almost half engaged in sessional drinking (at least five drinks within four hours). Under half (35%) of participants reported drug use, and 53% of respondents reported current smoking. Of these, 82% reported interest in discussing cessation strategies or lifestyle changes with clinic staff to reduce their risk of heart disease and cancer. The findings highlight the need for effective interventions at the interface with clinical care to reduce morbidity and mortality from non-AIDS causes and to prevent HIV transmission.
9. 'Everything is okay': The influence of neoliberal discourse on the reported experiences of Aboriginal people in Western Australia who are HIV-positive. This paper reports on data from a research project conducted in 2003 that aimed to give Aboriginal people in WA an opportunity to tell their story of living with HIV. Twenty Aboriginal adults living in Perth metropolitan (n= 4) and regional areas (n= 16) participated in interviews. Experiences of social, geographic, or other barriers to effective healthcare and QoL were discussed. Responses suggested neoliberal discourse can produce the impression that ‘everything is okay’ despite the difficult social and economic conditions of everyday life experienced by many Aboriginal people. Notably, the majority of the participants felt that HIV did not significantly affect their health, with depression and fatigue being the most prevalent health issues. These findings can help inform potential new approaches to both health research and service delivery that can be directed toward improving health outcomes for Aboriginal people.
10. Complementary medicine use by people living with HIV in Australia – a national survey. This study aimed to identify patterns of use of ingestible complementary medicines among adults receiving ART from HIV specialist clinics across Australia. Data were collected via a survey questionnaire (n= 1211) detailing reasons for use, information sources, and rates of disclosure of use of complementary medicines to medical practitioners and pharmacists. Ingestible complementary medicine was used by up to 53% of the 1037 patients returning a survey. The majority of users (79%) reported daily usage and the main reasons for using complementary medicine were to improve general health and wellbeing, enhance immune function, reduce fatigue, and increase energy. Almost half (37%) of participants reported experiencing depression or anxiety as a health concern. Almost one quarter (23%) reported using complementary medicine to reduce stress and anxiety, and 9% for depression. Only a small percentage of people living with HIV (19%) used complementary medicine to address treatment side effects.
11. Screening for HIV-Associated Neurocognitive Impairment: Relevance of Psychological Factors and Era of Commencement of Antiretroviral Therapy. This study aimed to evaluate the utility of two screening tools to detect neurocognitive impairment (NCI) among patients with HIV attending a community-based clinic in WA. A total of 58 PLHIV attending a community-based clinic for management of chronic HIV infection participated in this study. Participants were administered the Montreal Cognitive Assessment (MoCA) and a 3-item cognitive concerns questionnaire derived from the HIV Dementia Scale. Study findings observed clinically significant symptoms of depression and anxiety in 21% and 15% of the sample respectively. Patient-reported QoL measures, including physical health, psychological health, and social health, were significantly correlated with self-reported psychological distress scores. Patients who reported higher levels of depressive symptoms had lower overall quality of life. Additionally, increased frequency of self-reported cognitive concerns was significantly associated with poorer quality of life. The MoCA was deemed a useful screen for detecting early NCI among this cohort.
12. Belonging, social connection and non‐clinical care: Experiences of HIV peer support among recently diagnosed people living with HIV in Australia. This study explored the experiences of recently diagnosed PLHIV accessing HIV peer support services in Australia. Data were collected from interviews (n= 26), exploring the experience of diagnosis; HIV treatment and clinical care; engagement with HIV support services, sex and relationships, likely source of infection, and the overall impact of HIV on participants' lives. About 12 months after, follow-up interviews were held to explore any shifts in participants' experiences of living with HIV. Findings highlighted the advantages of peer support, particularly one-on-one peer navigation, as it provided non-clinical, real-life perspectives on living with HIV. Peer navigators were seen as being in a unique position to convey clinical information from a different, experiential standpoint. Additionally, peer navigation was viewed as a source of optimism, challenging common perceptions of PLHIV and opening up possibilities for a fulfilling life with the condition. Women and Indigenous Australian participants emphasized the importance of being matched with peers who could understand their intersecting identities, adding to the significance of peer support in addressing their unique needs.
13. Online self-management for gay men living with HIV: A pilot study. This study aimed to evaluate Positive Outlook, a peer-facilitated online self-management intervention for gay men living with HIV. During Pilot 1 of the program, data were collected through pre- and post-program surveys and qualitative interviews (n= 10). Pilot 2 involved the random assignment of participants (n= 37) to receive the intervention or usual care. Overall, the majority of outcome measures showed positive improvements from pre-test to post-test follow-up. Significant enhancements were observed in various QoL domains, including physical health and symptoms, body image, relationships, emotions, and overall. There was a notable reduction in depressive symptoms. Findings from Pilot 2 observed enhancements in various aspects of quality of life among participants in the intervention group, including physical health, symptoms, body image, social and intimate relationships, stigma, emotional distress, and health concerns, when comparing baseline and follow-up data. However, the intervention group also showed an increase in depressive symptoms and a decrease in general self-efficacy.
14. HIV Diagnosis as Both Biographical Disruption and Biographical Reinforcement: Experiences of HIV Diagnoses Among Recently Diagnosed People Living With HIV. This study aimed to explore experiences of HIV diagnosis among people living with HIV. Data were collected from interviews (n= 34) between January 2019 and August 2021. Interviews explored the experience of HIV diagnosis, access to treatment and clinical care, HIV disclosure, sex and relationships, and engagement with psychosocial support services including community-based HIV peer support services. When participants were asked to reflect on the period following their HIV diagnosis, they frequently mentioned that it caused their plans for the future to become less certain. Receiving a positive diagnosis was a pivotal moment that raised doubts about their previously made plans. Limitations on work opportunities and migration prospects further contributed to the uncertainty surrounding their future. Additionally, the study found that while only a small number of participants reported directly experiencing stigma from others, many reported internalised stigma. Despite advancements in biomedical HIV treatment and prevention, receiving an HIV diagnosis remains a difficult experience for some.
15. The barriers to linkage and retention in care for women living with HIV in an high income setting where they comprise a minority group. This study explored the barriers to linkage and retention in care for women living with HIV in Australia. Australian healthcare providers who provide clinical care for women with HIV and have a high caseload of female clients were approached to participate in a survey for this study. Participants were invited to complete an anonymous 58-point survey (n= 484) about the experience of women living with HIV for whom they provide care. The survey collected data on demographics, HIV, reproductive health and linkage, and retention in care. Study findings indicated a small proportion of women (9%) had not disclosed their HIV status to anyone, and only 25% had participated in an HIV peer support program. Among the 361 women who did not engage in peer support, 59% had declined despite receiving information, 9% were yet to attend despite being given information, and 12% had not received information at all. Additionally, only 5% of women were not retained in care, with reasons including transportation challenges, caregiver responsibilities, financial pressures, health beliefs, and concerns about stigma or disclosure.
16. Gay Community Periodic Survey: Perth 2021. This study aimed to provide data on sexual, drug use, and testing practices related to the transmission of HIV and other STIs among gay and bisexual men in WA in 2021. An online survey was administered (n= 1013) with participants recruited face-to-face at gay venues and events in Perth and online via advertisements on Facebook and Grindr. Study findings showed that nearly a third of participants reported having fewer sexual partners because of COVID-19, with the most common way of meeting male sex partners being via mobile apps (46% of the sample). The proportion of participants who reported ever being tested for HIV (87%) or had reported testing for HIV in the past 12 months (69%) remained stable in 2021. Additionally, all but one PLHIV reported being on HIV treatment. PrEP was reported as the most commonly used HIV risk reduction strategy by gay and bisexual men with casual male partners in WA. Findings can inform policy, practice, and research.