HIV Intervention/Mental health among HIV infected CHildren and Adolescents in KAmpala and Masaka, Uganda (CHAKA)

Lead Research Organisation: MRC/UVRI Uganda Research Unit on AIDS

Abstract

Globally, 2.1 million children and adolescent have HIV, 80% of these are found in sub-Saharan Africa. Studies from developing countries have documented a considerable burden of impairing psychiatric disorders among children and adolescents with HIV. There is a lack of such research from sub-Saharan Africa where the biggest burden exists. Research in this area is required to inform the development of interventions and for advocacy with policy makers and implementers.

We undertook a longitudinal study to investigate psychiatric and neuropsychiatric disorders among 1,339 HIV positive children and adolescents and their caregivers in Uganda. This study involves assessments at baseline, 6-months and 12-months. We are in the process of completing the 12-months assessments (to be completed by the 30th June 2016). Retention in the study has been good, at 6-months was 1202 (90% retention rate), while at 12-months has so far been 1190 (88.9% retention; as of 13th June 2016).

From the baseline data, 433 (32.4%) had significant psychiatric symptomatology. About a quarter of the study respondents 314(23.5%) reported functional impairment as a results of psychiatric symptomatology. Therefore, HIV in childhood and adolescence in the sub-Saharan African context of Uganda is associated with a considerable burden of psychiatric symptomatology which is associated with considerable functional impairment.

Technical Summary

Background: Globally, 2.1 million children and adolescent are living with HIV (CA-HIV), 80% of these are found in sub-Saharan Africa (UNAIDS, 2012). It is estimated that between 20-50% of CA-HIV have neuropsychiatric disorder which not only impairs their quality of life but also interferes with their social and academic functioning and predispose them to high risk behaviours. Most of the research in this area has been undertaken in high income countries with a lack of studies from sub-Saharan Africa where the biggest burden exists. The few African studies in this area have mostly been small and cross-sectional in nature hence not able to elucidate the complex inter-relationship between variables involved in these disorders.
Study design: We are currently undertaking a longitudinal study involving 1,339 CA-HIV and their caregivers enrolled from both urban and rural HIV clinics in central and south-western Uganda. This is a 12-months study with assessments at baseline, 6-months and 12-months and involves a qualitative component.
Objectives: The general objectives of this study to understand psychiatric disorders (PD) and neurocognitive disorder (NCD) among children and adolescents with HIV (CA-HIV) in Uganda. The specific objectives are: i) to determine the prevalence and incidence of PD and NCD among CA-HIV; ii) to determine the risk factors and predictors of PD and NCD among CA-HIV; iii) to describe the impact of PD on negative behavioural and clinical outcomes; iv) to investigate explanatory models of PD, help-seeking behaviour, unmet needs of care and expectations from mental health care services.
Updates so far: We are in the process of completing the 12-months assessments (to be completed by the 30th June 2016). Retention in the study has been good, at 6-months was 1202 (90% retention rate), while that at 12-months has so far been 1190 (88.9% retention; as of 13th June 2016).
Preliminary results: From the baseline data, 93 (7.0%) had at least one DSM-5 psychiatric disorder and 433 (32.4%) had above threshold psychiatric symptomatology. The main DSM-5 psychiatric disorders reported included: oppositional defiant disorder (ODD) 29(2.2%), separation anxiety disorder 25(1.9%), attention-deficit hyperactivity disorder (ADHD)16(1.2%), conduct disorder 16(1.2%), generalised anxiety disorder 10(0.8%) and major depressive disorder 7(0.5%). About a quarter of the study respondents 314(23.5%) reported functional impairment as a results of psychiatric symptomatology.
Conclusion: HIV in childhood and adolescence in the sub-Saharan African context of Uganda is associated with a considerable burden of psychiatric symptomatology which is associated with considerable functional impairment.

Publications

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Description CHAKA Collaboration 
Organisation Kyambogo University
Country Uganda 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description CHAKA Collaboration 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Country United Kingdom 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description CHAKA Collaboration 
Organisation Makerere University College of Health Sciences
Department Department of Psychiatry
Country Uganda 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description CHAKA Collaboration 
Organisation Stony Brook University
Department Department of Psychiatry
Country United States 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description CHAKA Collaboration 
Organisation University of Ghana
Department Department of Psychology
Country Ghana 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description CHAKA Collaboration 
Organisation University of Stellenbosch
Department Department of Psychiatry
Country South Africa 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description CHAKA Collaboration 
Organisation University of the Witwatersrand
Department School of Public Health
Country South Africa 
Sector Academic/University 
PI Contribution This consortium has been able to plan and execute the largest study in the world on the psychiatric and neurocognitive problems of children and adolescents with HIV/AIDS in Uganda.
Collaborator Contribution Partners provided the study instruments, contributed to study design, implementation and analysis and now write up of the data from this project.
Impact 15 publications have so far been made out of this award using the data from this award we are developing a mental health intervention model for adolescent HIV care services in Uganda
Start Year 2014
 
Description A consultative workshop 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A consultative workshop on, 'The development of a model to integrate mental health into adolescent HIV care services in Uganda' on the 18th April 2018 at the MRC/UVRI & LSHTM, Entebbe.
Year(s) Of Engagement Activity 2018
 
Description A symposium on Trauma, Addiction and Mental Health 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presented a paper entitled, 'Exploring the relationship between trauma, psychiatric disorder and addiction in post-conflict settings in Africa' in a symposium on Trauma, Addiction and Mental Health held by the Department of Psychiatry, Makerere University, on the 16th March 2018, at MUJHU, Kampala.
Year(s) Of Engagement Activity 2018
 
Description A workshop by the Academy of Medical Sciences and the InterAcademy Partnership for Health 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Chaired the panel discussion on, 'Achieving the SDG goal of universal coverage for mental health care' at the workshop on, 'Mental health in low- and middle-income countries (LMICs)' jointly run by the Academy of Medical Sciences and the InterAcademy Partnership for Health from the 28th -29th June 2018, at the Academy of Medical Sciences, London, United Kingdom.
Year(s) Of Engagement Activity 2018
 
Description A workshop by the Harvard Medical School Center for Global Health Delivery 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Attended a workshop by the Harvard Medical School Center for Global Health Delivery entitled, 'Scaling up community health worker-delivered interventions for common mental disorders' at the Mohammed Bin Rashid University (MBRU)/ Dubai Healthcare City, Dubai, United Arab Emirates from 23rd -25th June 2018.
Year(s) Of Engagement Activity 2018
 
Description Article for National Daily 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The article was published in the New Vision, Uganda's biggest daily. It was educating the public about depression as a possible mental health complication of HIV. It used personal testimonies of respondents who had been part of our studies. For example one respondent who is quoted in this article said, 'As a child, life used to be miserable for Jackline Agutamba, 18, a resident of Buwama in Mpigi district, because she used to frequently fall ill. With time, Agutamba came to understand that her parents died of AIDS-related conditions and she was also born with HIV. She suffered severe depression because of her condition. She disclosed her journey with depression and how she finally overcame it to Lillian N. Magezi and I would often be in my bed, crying and wishing for death. Every time I would go for a check up, my viral load would be high, even if I was adhering to my ARVs. The nurse at the health centre counselled me about depression, telling me that it was the major reason my viral load was high, even when I adhered to ARVs. She encouraged me to get involved in activities at the health centre, so as to keep myself busy and avoid wallowing in self pity. I started working as a volunteer adolescent peer counsellor at knowing that I was not the only one. In addition, the project involved a lot of activities, which kept me occupied. However, I continued being depressed and being miserable, until the Medical Research Council (MRC) started implementing a pilot project involving diagnosing and treating depression among people living with HIV. I was advised by the medical worker at the health centre, where I get treatment, to join the programme because she knew that I had been depressed for a long time. I was assessed and diagnosed with severe depression. After which, I was sensitised about the treatment options, which are either treatment by drugs or counselling (talk therapy). Because I was already taking so many drugs, I opted for counselling. I used to attend a session for one hour every two weeks for six months. At first, I was sceptical and was not responsive to the therapy. However, the more I went for the counselling sessions, the more open I became to dealing with my depression and accepting my HIV status. I started feeling better, became less miserable and became more outgoing. With time, I became more active and increasingly interested in my treatment. I eventually overcame the depression and I am now enjoying myself. I adhere to my treatment and my viral load is very low. More so, even the recurrent illnesses I used to get are not happening any more.'
Year(s) Of Engagement Activity 2019
 
Description Key Note Address to mark World Mental Health Day 2019 in Uganda 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Was invited by the Ministry of Health of Uganda to give a talk on Suicide among Refugees at Kyaka II Refugee Settlement in Western Uganda, an event to mark World Mental Health Day in Uganda. The target audience were about 28,000 refugees at that settlement. The presentation was also aired on National Media. I talked about the prevalence of suicidal behaviour among refugees, possible causes, how to identify a relative/ friend/ neighbour who is at risk for suicidal behaviour and how to find help.
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Year(s) Of Engagement Activity 2019
 
Description The 10th anniversary Mwanza Intervention Trials Unit (MITU) Symposium event, 27th -29th November 2018 at MITU, Mwanza, Tanzania. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presented a paper entitled, 'Integrating mental health care into adolescent HIV care in Uganda: Any lessons from the CHAKA study?', at the 10th anniversary Mwanza Intervention Trials Unit (MITU) Symposium event, 27th -29th November 2018 at MITU, Mwanza, Tanzania. Also attended the African Research Leaders satellite meeting of the MRC/DFID African Leadership scheme, 29th November 2018, Mwanza, Tanzania.
Year(s) Of Engagement Activity 2018
 
Description The Global Ministerial Mental Health Summit, 28th-30th September 2018, London United Kingdom. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Presented a paper entitled, 'Undertaking mental health research in Africa: The Experience of the Mental Health Project at MRC/UVRI & LSHTM Unit in Uganda', at the Global Ministerial Mental Health Summit, 28th-30th September 2018, London United Kingdom.
Year(s) Of Engagement Activity 2018