‘Too old to test?’: A life course approach to HIV-related risk and self-testing among midlife-older adults in Malawi

The life-course comprises the set of socially defined events and roles individuals enact over time [19]. Within the life-course, in addition to chronological age, aging is socially and historically constructed by different life events, experiences, and social expectations which shape individual behaviours, perceptions and attitudes [20, 21]. These age constructs inform how individuals enact and cultures express “age” through different life stages, such as adulthood, midlife and elderhood, and their meaning in society [20, 22‐24]. Within these constructs culturally-dominant ideals of achievement, respectability and status contribute to shared age-related identities [25]. Diversity of experiences informed by gender, power, class, place and time also influence and define multiple and continuous expressions of age within and across cultures [26‐28].

Studies in southern Africa have begun to apply life-course approaches to understanding HIV among older adults [9, 16, 29‐35]. Findings have highlighted how age norms can make accessing HIV prevention, testing and care challenging. This is often due to concerns about loss of respect and age-related stigma and discrimination reflecting experiences from earlier times when treatment was not widely available. Age norms can also be gendered by traditional masculinities reducing HIV testing and ART initiation among older men [7], or increased household and community responsibilities becoming a barrier to health services, including HIV testing, among older women [12, 22, 29].

The vast majority of studies continue to focus on aging as it relates to trends in HIV epidemiology, risk factors and issues following an HIV-positive diagnosis [10, 11, 15, 29, 36]. Framing the discussion around the life-course [19], while also considering age and gender [20, 25], contributes to the literature by examining the gendered construction of ‘respectable’ midlife-older age adult life in southern Africa, and how it influences perceptions of HIV-related risk and both conventional HIV testing and self-testing in urban and rural Malawi.

Here we explore perceptions of HIV risk and HIV testing among midlife-older men and women living in rural and urban Malawi following the introduction of HIVST. Drawing on theories of life-course [20, 21] and performance of self in society [24], we use qualitative methods to understand how social age is enacted and implications for HIV testing and sexual risk behaviours among midlife-older Malawians. We also explore the potential for HIVST to be part of a broader strategy for engaging midlife-older adults in HIV testing, prevention and care.

Participants drew from a range of norms and attributes to define elderhood and the start of midlife-older age in Malawi. While some focused on chronological age, with midlife-older age starting between 30 and 35 years, most defined this period by attributes and experiences [20], including the start of declining health or loss of strength, increased wisdom, respectable behaviour, major life events and increased responsibilities (e.g. marriage, parenthood). Because of this, many acknowledged that youth could be treated as “older”, based on marriage and through being compliant and respectable. Whereas those engaged in ‘bad’ or ‘unwise’ behaviours were considered “childish” at any age (Table 2, quotes (Q) 1–3).

The one who is looked at as an old person, is the one who follows the advice that he has been given, because when an old person is told something he follows the rules. The one whom we consider as a young person, is the one who doesn’t follow the advice that people give him. – Community resident, 35-49 years, urban, FGD

Participants voiced disapproval however when life events challenged life-course norms, such as older men leaving families and children, or pregnancy among young girls and older women.

Gender roles and responsibilities continued to follow traditional heteronormative dichotomies of men as head-of-household and women caring for the household and community. With age, both midlife-older adults, especially women, were expected to become more responsible, with diminishing sexual activity and infidelity. Being faithful and trustworthy was considered important for both genders, although most commonly described as a ‘mature’ female trait.

Older participants described themselves as ‘less sexually active’, more likely to be married, and less likely to have many partners. Indeed, having a ‘highly active sex drive’ in later life was considered socially unacceptable (Q4).

How could an elderly person like this be found with a disease like this? It should have happened to the youth because they are the ones who ‘run faster’ (are more active sexually). – Community resident, 35-49 years, urban, IDI

Men and women felt that only youth were affected by HIV, and midlife-older adults were at low risk (Q7). Sexual risk was discussed purely in the context of current behaviour, without acknowledging that a recent HIV diagnosis could reflect infection acquired years earlier.

When an old person is looking at a young person, he thinks that a young person has [HIV] in his body. But when a young person is looking at an old person he is 100% sure that this old person does not have any [HIV] in his body. – Community resident, 35-49 years, urban, FGD

Infidelity by oneself or one’s partner was an acknowledged risk for acquiring HIV within both urban and rural communities. Few participants however were willing to acknowledge this as a risk within their own relationship. Men spoke more frequently and openly about infidelity, including hinting of doubts about their partner, but still rated themselves as being at low risk. The exception was when a partner was known to be HIV-positive or was known to have had an affair with someone known to be HIV-positive (Q10).

[Interviewer: You had any perception of risk of HIV then, before found positive with self-testing?] Yes, because my husband had a relationship with a woman who was HIV positive and she was on ARVs … My husband doesn’t stop his immoral behaviour. – Community resident, 35-49 years, rural, IDI

While sexual transmission of HIV was acknowledged, midlife-older adults strongly emphasised non-sexual modes of transmission as a reason for older adults to worry about HIV and to consider HIV-testing. This reflected stated age norms of sexual inactivity, marriage, fidelity and respectability assigned to those considered older. Women in both rural and urban areas expressed concern about acquiring HIV through caring for the sick and bathing the dead. Routinely sharing items was another concern cited by both men and women, and including beard shavers, razors, soap and needles used for removing thorns. For CBDs, emphasising non-sexual routes of transmission provided a socially acceptable way of promoting HIVST amongst midlife-older adults, avoiding detailed discussions about sex which made participants less comfortable (Q11).

We explain to them that one can contract the virus through different ways. It might be that you helped a certain person, or maybe you used something sharp, and from nowhere you can easily contract the virus. Because of that, they say ‘I think that you are explaining well’ and you will find that they get tested. –CBD, < 35 years, urban, FGD

Midlife-older adults considered themselves to be more subject to HIV stigma and at greater risk of losing social standing than younger people if diagnosed with HIV, or even if seen to be testing. They anticipated being considered ‘childish’, mocked and laughed at if diagnosed HIV-positive, and that their diagnosis would be interpreted as a ‘lack of wisdom’ and sexual impropriety (Q14–16).

We look at those old people who contract HIV as if they lack wisdom. – Community resident, 35-49 years, urban, FGD

The extent to which these concerns were justifiable, and from what age, however, was unclear: for instance, neither of the two married women in their 30s who disclosed that they were diagnosed with HIV through self-testing experienced any negative reactions (Q24–25).

Awareness of HIV was considered psychologically stressful, with some older adults considering themselves to be “already finished” with little to gain from learning their HIV status. ART was considered beneficial to health by all, although sometimes difficult to access. And there was little evidence of awareness of treatment-as-prevention, with newly diagnosed participants instead stating intent to use condoms or practice sexual abstinence with their spouse (Q17; Q19).

Some older people say ‘I have already grown up – what is remaining here is just dying. Why should I go to test? Even if they will mend [treat] me, what will that do for me?’ – Community resident, 50+ years, urban, FGD

Since that incident happened [both diagnosed with HIV], the community health worker came and gave us condoms. That’s what we are using now. We are using condoms, apart from that we usually having sex once per week or two weeks. – Community resident, 35-49 years, rural, IDI

In this context, testing for HIV was considered stigmatizing for older adults as there was widespread belief that wanting to test would be interpreted as evidence of recent infidelity or sexual risk-taking and that testing HIV-positive would only be harmful. The need for complete confidentiality was stressed for the act of testing, as well as the results, with caution expressed even for home-based or community programmes visible to family and neighbours even though participants recognised that those testing HIV-positive would inevitably lose all confidentiality as soon as they were seen to be attending their local ART clinic.

Community-based HIVST, with support and guidance from a CBD and the option to give a kit to a partner, was considered to have many advantages for midlife-older adults, addressing their concerns by providing confidentiality and stigma, as well as convenience. Older participants desired more support compared to younger participants while self-testing, which was confirmed by CBDs (Q26–28).

Old people prefer different things. Those who have reached 45 to 70 years are the ones who test in our presence so that we should help them in reading the results, and so you can explain the instructions to them properly. – CBD, 35-49 years, urban, FGD

Being able to give an HIVST kit to a partner or self-test with a spouse, having decided and received information and counselling together, was considered advantageous by midlife-older adults (Q29–32).

I found myself to be HIV positive together with my husband. [Before] we had plans to go for testing, so we took self-testing together as an advantage to us, [and] we accepted the results … There is benefit because it [self-testing] will bring trust and love to each other. – Community resident, 35-49 years, rural, IDI

Neither gender, however, liked the idea of having a self-test kit imposed on them by their partner via “secondary distribution”, reflecting themes of HIV testing undermining social position, as well as questioning one’s elderhood by doubting their fidelity.

Concerns about risks posed to the community by HIVST were negligible for all age-groups, with anticipated benefits considered to outweigh harms. No social harm was reported by participants who all previously self-tested, including two women who disclosed that they were diagnosed with HIV through self-testing.

Many urban participants considered younger CBDs inappropriate for older community members, being unable to discuss personal issues and unlikely to be persuasive (Q33; Q35). However, older participants in rural settings prioritized trustworthiness over age or sex of distributors (Q34).

[Interviewer: Who should distribute self-test kits in terms of age and sex?] Anyone, as long as the person is trustworthy. – Community resident, 35-49 years, urban, IDI

This reinforced views that chronological age alone is not important, but that respectable behaviours and experience can also define what is considered “older”.

Acceptable alternatives to door-to-door distribution varied by age and gender, with women in their 30s suggesting outreach linked to antenatal and family-planning clinics, older women suggesting health facilities, and older men preferring fixed community collection points, workplaces or bus depots. These preferences aligned closely with perceptions of what was deemed age-gender appropriate.

Views on linkage post-HIVST did not appear to vary by age or gender, but some participants strongly preferred face-to-face post-test support. Following HIVST, having accompaniment from a relative or health worker or a referral slip (as in the study) was considered useful. Few other tools and approaches to support linkage were suggested.