Participant characteristics and key FGDs and IDIs quotes are summarised in Tables 1 and 2 in addition to select quotes which highlight key themes. Data presented, and findings were consistent. Supplementary information includes full summary of participant quotes (S2).
The main themes identified that there were stages of elderhood, with midlife-older age beginning around 30 to 35 years but mostly defined by respectable behaviour (e.g. low sexual activity, fidelity), attributes (e.g. wisdom) and life events (e.g. marriage, number of children). Views on respectable behaviour and age drove midlife-older adults to associate HIV with youth, but this reflected lack of knowledge and awareness of their own age-specific risks, including that HIV could have been acquired earlier and in previous relationships. The risk of sexual transmission at older ages was ignored: instead, there was a strong focus on non-sexual modes of transmission, implicitly considered more socially acceptable.
Because of their age, participants felt HIV testing could undermine their respectability, their roles and relationships in family and community life, and that health workers may stigmatize them if diagnosed with HIV. Learning one’s HIV-positive status later in life was considered stressful and deemed unhelpful, particularly as knowledge of the full benefits of ART and its role in preventing further transmission among those virally suppressed was very limited. As a result, midlife-older adults often considered conventional HIV testing unacceptable. Conversely, HIVST was highly preferable, for its convenience and privacy, especially through door-to-door distribution, though there were differences by age and sex.
Fig. 1. illustrates emerging themes within a life course approach with variation by age and gender among ‘respectable midlife-older adults’ in urban and rural Malawi.
Defining age and midlife-older adulthood
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
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.
Midlife social positions and sexuality
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
Risk perceptions in relation to modes of HIV transmission
Men and women felt that only youth were affected by HIV, and midlife-older adults were at low risk (Q5). 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
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 (Q9).
[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
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 (Q10).
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. – urban CBD
Consequences of HIV testing and diagnosis in later life
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 (Q13-15).
We look at those old people who contract HIV as if they lack wisdom. – Community resident
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 (Q23-24).
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 (Q16; Q18).
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
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
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.
Experiences and concerns relating to self-testing
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 (Q25-27).
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. - urban CBD
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 (Q28-31). – Community resident
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
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.
Future service delivery preferences for self-testing
Many urban participants considered younger CBDs inappropriate for older community members, being unable to discuss personal issues and unlikely to be persuasive (Q32; Q34). However, older participants in rural settings prioritized trustworthiness over age or sex of distributors (Q33).
[Interviewer: Who should distribute self-test kits in terms of age and sex?] Anyone, as long as the person is trustworthy. – Community resident
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.