Research priority setting
Several overarching priorities with a strong public health focus. were identified by both groups,
Major priorities were governmental and community support to meet basic needs, including adequate nutrition, and income. Although specific chronic and infectious diseases, including dementia, common infections and cancer were mentioned as priorities, responses were centred around basic and general healthcare needs, structural and social aspects of healthcare, and social stigma.
It is perhaps not surprising that our workshop participants prioritised basic needs and healthcare access. A 2011 Tanzanian report indicated that 45% of older people rely on family for income, with 28% in full-time work, 7% in part-time work and others relying on remittances (21%), pensions (5%) and charitable donations, Non-Governmental Organisations (NGOs) and neighbours (2%) (28). Almost 82% of Tanzanian elders aged 60 and older live rurally, which increases vulnerability to financial, food and housing insecurity (28). Frailty is associated with food insecurity(29), and estimated local prevalence of frailty in Kilimanjaro is 11%(30). Food insecurity is associated with functional impairment(31) and higher chronic disease prevalence (32).
Healthcare in Tanzania is part-subsidised by government but supplemented by out-of-pocket payments at a cost-sharing (not cost-recovery) rate(33). As age and comorbidities increase, increasing costs of healthcare visits alongside decreasing physical ability to work may result in financial barriers to accessing health services. This could also explain prioritisation of basic and healthcare needs.
Although groups raised common themes, there were some differences between the priorities of people living with HIV and those of community elders. Healthcare access appeared a greater concern for community elders than for people living with HIV. Our previous research findings suggest that individuals on treatment for HIV may have better-managed and better recognised chronic comorbidities through access to regular clinic review funded through international HIV aid programmes which may not be similarly available to the general population(34).
Public and community education for older people was also prioritised. Suggestions included smoking cessation or alcohol reduction advice, as well as carers’ education programmes for families caring for frail elders. Again, the rural elders more commonly prioritised these. This may reflect increasing local awareness of alcohol and tobacco smoking as risk factors for non-communicable disease (35, 36). It may also be that widespread HIV-focussed public education programs, and healthcare advice available to people under regular HIV follow up, mean that this health education is less of a perceived need for this group.
People living with HIV prioritised social isolation, stigma and the importance for older people to be loved and respected. Strong links exist between frailty and social isolation or loneliness in high income countries(37), although SSA data are lacking. Previous local data on ageing with HIV suggests that both frailty and HIV-associated neurocognitive disorders (HAND) may be associated with social isolation(38, 39).
Feasibility of PPI/CEI in HIV ageing research.
Facilitators of the workshops reported excellent participant engagement, with open dialogue and discussion providing anecdotal evidence that further community and patient involvement in HIV and ageing research would be feasible in this setting.
The high level of interest in future involvement in the planning and conduct of research indicated amongst respondents is highly encouraging.
Despite prominence in national development priorities outlined by international literature, CEI and PPI are not yet widely implemented in SSA(40). One barrier to CEI in HIV-infected populations might be the ongoing stigma surrounding HIV infection in Tanzania(27). Fear of HIV status becoming public knowledge may result in reluctance to participate in studies. Concomitantly, older interventional studies such as those of pre-exposure prophylaxis with poor community engagement strategies have seriously eroded trust between people with HIV and researchers(41).
However, participants eager to engage with research, with people living with HIV especially keen to be involved with planning and priority setting. This could mean that participants felt confidentiality was well respected in the design of these workshops, or that participants from the HIV clinic might be more familiar with the concept of medical research, due to exposure to ongoing clinical studies taking place in the clinic, and therefore more confident in engaging with the process.
It has been suggested that community engagement in global health contexts has undergone a ‘reflexive shift’ with increasing recognition that much community engagement assumes a knowledge gap to be addressed in a ‘top down’ manner by researchers informing the public rather than a truly collaborative process(42). It was interesting therefore, that provision of research education and information by researchers to the local community, were repeatedly prioritised, especially by community elders. Our rural participants may be comfortable with the dissemination model, given that our team have disseminated research findings to local community stakeholders annually.
Consideration of the key purpose of community engagement in global health research is important. Goals may include increasing recruitment and retention, by accommodating local sociocultural factors and increasing community ‘buy in’. Whilst this may be a useful goal, it is researcher driven. We wished to understand research priorities from the perspective of people living with HIV, necessitating a more collaborative approach. The workshop priorities generated indicate that rather than simply being ‘educated’ and ‘informed’ about the benefits of research on cognitive impairment, participants clearly indicated that broader aspects of health and social care were equally, if not more, important. Without working to co-produce research questions, we may fail to address the issues of most importance to the groups we are intending to benefit.
Although patient-led campaign advocacy and participation in HIV research have been highly successful in some contexts (6, 7, 10, 11), efforts have focussed on treatment access and prevention rather than management of chronic complications and ageing. This newly ageing population might not yet have a voice in the same way. Our workshop participants did not prioritise treatment access or prevention (the focus of most advocacy initiatives to date), possibly because these issues are now successfully addressed.
Strengths and Limitations
A strength of this work, is that it is underpinned by JLA principles and the workshop design included elements of the JLA process. A further strength is that review against the REPRISE framework indicates that many REPRISE domains are addressed by the study design and delivery. However, when considering the theoretical underpinnings of PPI, although we obtained some insights related to the ‘efficiency’ imperative and local priorities, the ‘emancipation’ imperative was more challenging as questions and context were framed by facilitators with guidance from study co-investigators. The lack of a previously-established PPI group, and exploratory nature of this work contributed to this issue, which may be addressed in future initiatives. The current limited LMIC data on PPI/CEI suggest that as in this work, current data focusses almost exclusively on research planning, rather than evaluation and impact, and that findings are primarily reported from the perspectives of the researchers(43). Future work should aim to address these issues by collaborating with stakeholders throughout projects including evaluation, and through reporting by stakeholders rather than researchers.
Similarly, although this study suggests CEI/PPI is feasible in HIV ageing research in this setting, a common challenge is that those already ‘engaged’ are more likely to participate (42). With regard to vulnerable populations, and power imbalances, challenges related to comorbidities, access and transport have the potential to further accentuate inequalities and the gap between included and excluded (42). Our community participants had previously engaged with a grassroots health organisation, and HIV clinic participants were regularly attending clinic follow-up. The identified priorities may not reflect those of more stigmatised marginalised and ‘harder to reach’ groups who are not actively engaged in clinic follow-up.
Non-heterosexual sexual activity is criminalised in Tanzania (44), and clinics servicing ‘key populations’ e.g.men who have sex with men (MSM) have been closed by the Ministry of Health due to concerns about promoting unethical behaviour(45). Therefore, there are likely unheard voices from this community, which were not captured in our workshops. This is important as marginalised communities disproportionately contribute to HIV transmission in SSA despite being an overall minority(46). This pilot work does not address the emancipation imperative for these groups, and future PPI and CEI work should consider other, anonymised ways of contributing without workshop attendance.
Women were overrepresented in the workshops, comprising nearly double the number of male participants. HIV is more prevalent in women than men in Tanzania (47). Notwithstanding the marginalisation of MSM, future priority setting exercises should aim to include a more balanced split of men and women to maximise relevance.
Our participants with HIV were from one, urban site (although some travelled from rural areas) whereas community elders lived rurally. This allowed for confidentiality of participants regarding HIV status and would have been difficult to avoid given the limited resources for this current work. However, to contextualise the differences between the two groups, it would have been useful to specifically include rural residents with HIV and urban community elders.