Russell, Steven
(2017).
Life on antiretroviral therapy: People's adaptive coping and adjustment to living with HIV as a chronic condition in Wakiso District, Uganda.
[Data Collection]. Colchester, Essex:
Economic and Social Research Council.
10.5255/UKDA-SN-851094
Data description (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 involved 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.
Data creators: |
Creator Name |
Affiliation |
ORCID (as URL) |
Russell Steven |
University of East Anglia |
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Contributors: |
Name |
Affiliation |
ORCID (as URL) |
Seeley Janet |
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|
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Sponsors: |
ESRC
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Grant reference: |
RES-062-23-2663
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Topic classification: |
Health
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Keywords: |
hiv infections, Uganda, hiv, therapy
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Project title: |
Life on antiretroviral therapy: People's adaptive coping and adjustment to living with HIV as a chronic condition in Wakiso District, Uganda
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Grant holders: |
Steven Russell, Janet Seeley
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Project dates: |
From | To |
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1 November 2010 | 31 August 2013 |
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Date published: |
16 Oct 2013 13:08
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Last modified: |
13 Jul 2017 13:00
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Collection period: |
Date from: | Date to: |
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1 November 2010 | 31 August 2013 |
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Country: |
Uganda |
Data collection method: |
This multi-method study involved three phases of data collection. Phase one was anthropological in orientation and collected life-history and illness narratives from 38 participants, who were recruited from the government hospital in Entebbe, three of the hospital’s referral health-centres, and the TASO Entebbe clinic. The first qualitative interview (Interview 1, life and illness history) was not taped (detailed notes were taken). The second qualitiative interview (Interview 2) was taped, transcribed verbatim, and translated back into English by fully bi-lingual interviewers, to ensure that the meaning of data had been retained.
In the third phase of data collection local enumerators administered a survey questionnaire to a cohort of 263 randomly selected participants living with HIV and on ART, as well as to a community control group (n=160) (so total sample size is 423). The survey questionnaire measured Illness Perceptions, Quality of Life (WHO QUAL Bref) and mood (Hopkins symptom checklist), mental adjustment to HIV, and socio-economic status. In addition, participants provided information of their age, gender, household size, years in education, religion and marital status. |
Observation unit: |
Individual, Organization |
Kind of data: |
Numeric, Text |
Type of data: |
Experimental data
, Qualitative and mixed methods data |
Resource language: |
English |
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Data sourcing, processing and preparation: |
Data fully anonymised. All names and major identifiers have been removed fom the data.
Ethical approval for the study was obtained from the Uganda Virus Research Institute and the University of East Anglia, UK. Overall approval was granted by the Uganda National Council for Science and Technology. Pseudonyms are used at all times to maintain confidentiality. Informed cnsent was obtained from all research participants. Copies of information sheets and consent forms are attached. Consent to archive data was not explicitly requested. Participants have been anonymised. All names and major identifiers have been removed fom the data.
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Rights owners: |
Name |
Affiliation |
ORCID (as URL) |
Russell Steven |
University of East Anglia |
|
|
Contact: |
Name | Email | Affiliation | ORCID (as URL) |
---|
Russell, Steven | s.russell@uea.ac.uk | University of East Anglia | Unspecified |
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Notes on access: |
The Data Collection is available for download to users registered with the UK Data Service.
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Publisher: |
Economic and Social Research Council
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Last modified: |
13 Jul 2017 13:00
|
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