SOCIAL SUPPORT, MENTAL HEALTH, AND QUALITY OF LIFE AMONG OLDER PEOPLE LIVING WITH HIV Findings from the HIV and Later Life (HALL) project

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1 SOCIAL SUPPORT, MENTAL HEALTH, AND QUALITY OF LIFE AMONG OLDER PEOPLE LIVING WITH HIV Findings from the HIV and Later Life (HALL) project EXECUTIVE SUMMARY October 2015 Lifelong Health & Wellbeing Research for Healthy Ageing

2 Authors: D Rosenfeld, Keele University; J Anderson, Homerton University Hospital; D Ridge, University of Westminster; D Asboe, Chelsea & Westminster Hospital; J Catalan, Chelsea & Westminster Hospital; S Collins, HIV ibase; V Delpech, Public Health England; V Tuffrey, University of Westminster; T Porter, University of East Anglia. Acknowledgements: The HALL team thanks all stakeholders and older people living with HIV who gave their time and expertise to the study. We also thank the clinics and HIV organizations that helped with recruitment and provided spaces and support for focus groups and interviews. The full HALL 2015 Report and the Summary entitled Getting older with HIV: A study of HIV positive people are available at For further information about the study, please contact Dr Dana Rosenfeld at Background to the study: The number of people over the age of 50 living with HIV in the UK is steadily increasing. With improvements in therapy, more people with HIV are living into older age. At the same time, increasing numbers of older people are acquiring HIV. Yet information on the assets and the needs of older people with HIV is lacking. The HIV and Later Life (HALL) study used both qualitative and quantitative methods to investigate the social support, mental health and quality of life (QoL) of people over the age of 50 living with HIV. The study was carried out in London between 2011 and 2103 by a multidisciplinary team, led from Keele University by Dr D Rosenfeld. Funding was from the Medical Research Council s Life-Long Health and Wellbeing Phase 3 Pilot Studies Programme. Methods: In the UK, the largest groups of people living with HIV who are over 50 are men who have sex with men (MSM) (mostly white), heterosexual people of black African heritage, and white heterosexual people. Some have been living with HIV over many years, and others have been diagnosed more recently. The team developed a sampling frame to purposively recruit representative participants to the study. The study was carried out in London. Potential study participants were approached through two NHS specialist HIV outpatient clinics, a mental health clinic serving a high number of older people living with HIV, and specialist HIV support organizations in the London area. We conducted three focus groups (a total of 23 participants) and 76 one to one individual life-history interviews that also included a survey focussing on mental health and QoL. A further 24 respondents from across the UK completed only the survey, which was expanded to include questions on social support. PIE CHART SHOWING PARTICIPANTS GENDER, ETHNICITY AND SEXUAL ORIENTATION Black African Heterosexual Women (17) Black African Women of unknown sexual orientation (1) White Gay Men (50) Black African Heterosexual Men (12) White Heterosexual Women (8) White Bisexual Women (1) White Heterosexual Men (8) White Bisexual Men (3)

3 Results: Half the study s interview and survey participants were aged and half were aged years. Participants reported many of the same challenges as those faced by younger people living with HIV. These included HIV-related stigma, the difficulties of disclosure, uncertainties of life with a chronic condition, and the impact of HIV on work, social relations, sexual and romantic relationships, and financial security. In addition, ageing with HIV introduced its own pressures and concerns. These included the differential stigmatization of older people living with HIV, concerns over long-term care, interruptions to plans for older age, and a lack of information about how ageing, HIV, and long-term use of antiretroviral medications intersect to affect health in later years. Mental health and QoL: Based on levels of depression and anxiety, and on frequency of low mood, most participants mental health was good or moderately good, and one third of participants mental health was poor. Over half stated that their QoL was good or very good, and one fifth characterized it as poor. For all participants, regardless of how they rated their QoL, good QoL was an ongoing project that required active work. Examples of the work needed to achieve good QoL were seeking appropriate support, attending and volunteering for HIV specific organizations, declining to identify with HIV groups, and rethinking HIV to lessen its impact on their lives. Summary of Findings The experience of ageing with HIV is shaped by gender, sexual orientation, culture, income, migration status, and age at diagnosis Two thirds of participants had good or moderately good mental health, and one third had poor mental health, as measured by reported levels of depression and anxiety. Two thirds of participants had good or moderately good QoL, and one fifth had poor QoL Better mental health and a higher QoL were associated with being male, being a MSM, having a partner, not receiving benefits, earning more than 10,000/annum, and being diagnosed HIV positive after the age of 40 Although HIV associated stressors are common among people of all ages with HIV, ageing and older age introduce additional specific concerns and stresses to the experience of HIV For people ageing with HIV, challenges to mental health and QoL include: HIV associated stigma, and the stigmatization of older people living with HIV in particular Uncertainties of the physical, psychological, and social impacts of ageing with HIV Difficulties in forming romantic partnerships in later life as a result of being HIV positive and of the perceived tendency of all older people to hold stigmatized beliefs about HIV Perceived lack of support and understanding as people living and ageing with HIV, even for people with strong social networks Concerns over remaining independent in later years, and the impact of HIV associated stigma on the quality of long-term care The complexities of disclosure and fears of rejection, especially as parents and older people seeking romantic relationships Disruptions to the lives and social roles envisaged in later life Being financially stressed, alone and fearful about the future Social support and personal experience and knowledge of HIV were strongly linked. Most participants had extensive and supportive family and friendship networks (although most black African participants families, including children and grandchildren, lived in their countries of origin). However, for many participants, support from HIV-negative friends and family needed to be supplemented by support from other people living with HIV. For participants with close and supportive friends and family and for those without strong family and friendship networks, support from other people living with HIV was important for good mental health and QoL. Participants stated that the support they gained from attending and volunteering in HIV organizations and groups was an important element in reducing isolation, providing a safe space, and allowing opportunities to give back and support others. HIV knowledge and social support: Participants reported a climate of HIV misinformation and stigma. They described differences between knowing about HIV and the knowledge gained by living with HIV. Participants considered the knowledge gained by living with HIV to be necessary for understanding the challenges, complexities, and mental stressors specific to people living with the virus. The support provided by HIV-negative members of their social networks, while valued, was not sufficient to help manage all the challenges to good mental health and QoL associated with living and ageing with HIV. This made others with HIV an important source of support. Many sought this experiential knowledge through their existing networks, by forming romantic attachments with other

4 people living with HIV, and through HIV organizations and support groups. For some, isolation, and the lack of people openly living with HIV within their social networks, made it difficult to access this support. MSM were most likely to have other people living with HIV within their long-standing social networks. Heterosexual people, both black African and white, sought out these connections through HIV specific organizations and support groups. The benefits of HIV support groups were most pronounced among those in receipt of statutory benefits. HIV support groups lessened the negative impact on QoL and mental health that resulted from being on benefits. RECOMMENDATIONS Public understanding of HIV requires improvement, particularly in relation to older people. HIV focussed educational and information resources that include appropriate representations of older people with HIV are needed. Commissioners of health services, public health and social care must assess and address the specific requirements of older people with HIV within their particular area of responsibility. The complexity and potential for fragmentation of care pathways for this population requires commissioners to work collaboratively across boundaries for best outcomes. Providers of mental health services, HIV specialist care, and social and primary care must be aware of and sensitive to the particular vulnerabilities of older people with HIV. Provider networks are recommended to meet the complex needs of older people, particularly those in receipt of benefits and others on low incomes who are isolated. The role of HIV specific peer support and other voluntary sector HIV provider organisations and support groups in delivering crucial social support that enhances the mental health and wellbeing of older people living with HIV must be understood and supported. HIV clinical and social care providers and facilities should develop care pathways that include peer support and voluntary sector services to which older people with HIV are introduced at the time of initial diagnosis. Opportunities for older people living with HIV to engage with other people living with HIV, to have access to safe spaces (where the pressures of HIV stigma and disclosure are less pronounced), and to contribute to their communities should be an integral part of service provision. Commissioners, agencies and service providers require appropriate knowledge and skills to meet the needs of older people with HIV. This includes education on (a) HIV prevalence and incidence among older people and (b) the fact that older people experience HIV differently than do younger people living with HIV. Understanding of the specific age associated HIV related stigma, uncertainties regarding medication and HIV itself, the pressures of disclosure, and the need for emotional and social support is required. Commissioners, agencies and service providers must be alert to the high proportion of older people living with HIV who are parents. Awareness of the complexities, including the ability to provide ongoing support to children, and if and how to disclose are key areas of concern. In anticipation of increasing numbers of people living with HIV entering their 70s, 80s and beyond, the long-term care sector will require training in the sensitive and appropriate range of care needed by older people living with HIV. Finally, older people living with HIV should be appropriately involved in all stages of planning, commissioning and delivery of services.

5 The full HALL 2015 Report and the Summary entitled Getting older with HIV: A study of HIV positive people are available at For further information about the study, please contact Dr Dana Rosenfeld at

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