Life on antiretroviral therapy: People's adaptive coping and adjustment to living with HIV as a chronic condition in Wakiso District, Uganda

Lead Research Organisation: University of East Anglia
Department Name: International Development

Abstract

The research in Entebbe, Uganda, will analyse the experiences of people living with HIV following access to life-saving antiretroviral therapy (ART).  The study aims to understand how people have responded to a new chance at life, what factors enable people to adjust to living with HIV as a chronic condition, and what support measures affect this adjustment.  The study aims to inform ART delivery policy and practice in resource-constrained settings.



Adjustment to a new life on ART poses medical, social and economic challenges, especially in settings of poverty. People must take treatment for the rest of their lives, and they are usually recovering after a period of serious illness and disruption to their social and economic lives.



Three ART delivery sites with different modes of delivery and support will be compared. A quasi-experimental research design will be used to compare people affected and unaffected by HIV and ART, and uses complementary qualitative and quantitative methods.



The research will involve collaboration between four partners: The School of International Development at UEA, and in Uganda the Medical Research Council, The AIDS Support Organisation and a Ministry of Health hospital.

 
Title The Mango Tree: Living with HIV in Uganda 
Description Filmed around Entebbe in Uganda, this positive documentary tells the story of four people living with HIV and how their health has been restored, and their lives transformed, by treatment which is becoming more widely available in sub-Saharan Africa. Combining interview footage with scenes from Uganda and the four people's everyday lives, the film captures their enthusiasm for a new chance at life and their hope for the future. Their stories portray vividly how HIV has become a manageable chronic condition, not a death sentence, and illustrate the changes taking place for many other people living with HIV in Africa and elsewhere. The words of one of the participants inspired the name of the documentary: "I can now plant a mango tree and live to eat its fruits". 
Type Of Art Film/Video/Animation 
Year Produced 2013 
Impact The documentary film (English and Luganda versions) was made with the approval and input of the The AIDS Support Organisation (TASO) in Uganda, and is being shown in Kampala and Entebbe to inspire and encourage people attending their clinics to start and continue taking treatment. Its main target audiences for impact are therefore citizens in Uganda (and other countries - see below) and civil society organisations like TASO. The film has had over 1500 views on YouTube (http://youtu.be/9zFaKNPL2OQ). Before the first showing of the film on World AIDS Day 2013 (1st December) in Norwich, the PI did two radio interviews with Radio Norfolk. After showing the film at the Picture House Cinema in Norwich (Cinema City) we were contacted by a representative of an organisation called the Pan African Development Education and Advocacy Progamme (PADEAP) (http://www.padeap.net). PADEAP requested film copies for its projects in Uganda and Nigeria. We have also made a French version of the film to be used in parts of Francophone Africa by PADEAP. 
URL http://www.youtube.com/watch?v=9zFaKNPL2OQ
 
Description Numerous findings have been identified from the analysis of the qualitative and quantitative data, and published in several journal papers which are now available on-line.

The first set of findings to be published in PLOS One (Martin et al 2014) showed that quality of life (QoL) among people living with HIV (PLWH) in Uganda (n=260) was higher than among a community control sample (n=160). The data also showed that depression scores were lower among the PLWH compared to the community control sample. These are surprising and original results.

A related paper, published in PLOS ONE (Russell et al 2016), presents qualitative data and theoretical insights from health psychology literature to explore why PLWH reported higher QoL scores and lower depression scores. Among the 38 participants involved in the qualitative research, many were struggling economically, however the recovery of health and hope on ART had enhanced wellbeing and motivated self-management. The majority were managing their condition well across three broad domains of self-management. First, they had mobilised resources, notably through good relationships with health workers. Advice and counselling had helped them to reconceptualise their condition and situation more positively and see hope for the future. Many had also developed a new network of support through contacts they had developed at the ART clinic. Second, they had acquired knowledge and skills to manage their health, a useful framework to manage their condition and to live their life. Third, participants were psychologically adjusting to their condition and their new 'self': they saw HIV as a normal disease, were coping with stigma and had regained self-esteem, and were finding meaning in life. Our study demonstrates the centrality of social relationships and other non-medical aspects of wellbeing for self-management which ART programmes might explore further and encourage.

Another key set of findings was about changing patterns of stigmatisation caused by people's recovery of health on antiretroviral therapy (ART). Processes of reduced self-stigmatisation were clearly evident among the 38 participants, caused by recovery of physical appearance and support from health workers. However most participants continued to conceal their status because they anticipated stigma, for example they feared gossip, rejection and their status being used against them. Anticipated stigma was gendered: women expressed greater fear of enacted forms of stigma such as rejection by their partner; in contrast men's fears focused on gossip, loss of dignity and self-stigmatisation. The evidence indicates ART has not reduced underlying structural drivers of stigmatisation, notably gender identities and inequalities, and that interventions are still required to mitigate and tackle stigmatisation, such as counselling, peer-led education and support groups which can help PLWH reconstruct alternative and more positive identities.

Another set of findings examine how people living with HIV (PLWH) were able to reconceptualise their understanding of HIV and enhance their capacity to self-manage the condition (Russell et al 2015). The participants' narratives revealed how ART providers played an important role in shaping participants' HIV self-management processes. Health workers helped PLWH realise that they could control their condition, provided useful concepts and language for emotional coping, and gave advice about practical self-management tasks, although this could not always be put into practice. ART providers in this setting were spaces for the development of a collective identity and a particular form of therapeutic citizenship which encouraged self-management, including adherence to ART. Positive framing institutions are important for many PLWH in resource-limited settings and the success of ART programs.
Exploitation Route HIV treatment providers in resource-limited settings can use the findings to inform aspects of their their provision, notably in relation to self-management and stigma reduction programmes.
Sectors Education,Healthcare
 
Description Premiere of film documentary "The Mango Tree: Living with HIV in Uganda", at Cinema City in Norwich on World AIDS Day Dec 1st 2013 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact The film was shown on 1st Dec 2013 at a leading cinema in Norwich, and afterwards the PI chaired questions and answers with the audience. An NGO employee (with PADEAP - Pan African Development Education & Advocacy Programme) in the audience later a) asked for copies of the film to take back to their offices in Uganda and Nigeria, and b) for a French translation, which we subsequently did (using French sub-titles) and sent to the NGO.
Year(s) Of Engagement Activity 2013
URL https://www.youtube.com/watch?v=9zFaKNPL2OQ
 
Description Radio interviews (two) with Radio Norfolk on World AIDS Day 2013 to discuss the research findings and the film documentary being shown that weekend at Cinema City, Norwich 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Two radio interviews with Radio Norfolk, one 3-4 minutes long, and the second 15 minutes long, about HIV in Africa, our research findings and the film we made called the Mango Tree.
Year(s) Of Engagement Activity 2013
 
Description The film documentary output "The Mango Tree" shown to refugee women in Norfolk by Terence Higgins Trust as part of its outreach and awareness activities 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact In 2016-17, the documentary output made in 2013, "The Mango Tree: Living with HIV in Uganda", has been and will be used by the Terence Higgins Trust in the UK for its outreach and awareness work for refugee women in Norwich, UK. It has already been used in a series of 5 sessions with refugee women in Norwich as part of a discussion around taking HIV treatment.
Year(s) Of Engagement Activity 2016
 
Description Visit to The AIDS Support Organisation (TASO), Uganda 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Visit to TASO headquarters in Kampala to discuss the research findings from this grant, as well as potential new research ideas relevant to TASO. In addition, a visit to TASO regional / district headquarters in Tororo where the research findings were also presented and discussed.
Year(s) Of Engagement Activity 2016