The direct and indirect effects of HIV/ AIDS on the Health and wellbeing of older people study (WOPS)- Wave 3
South Africa, 2017
Professor Janet Seely, Dr Anita Edwards
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March 14, 2019
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March 14, 2019
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Identification
Survey ID Number
AHRI.WOPS.Wave3.2018.v2
Title
The direct and indirect effects of HIV/ AIDS on the Health and wellbeing of older people study (WOPS)- Wave 3
Country
| Name | Country code |
|---|---|
| South Africa | ZA |
Abstract
During 2009-2010, the previously Africa Centre for Population Health, now Africa Health Research Institute (AHRI) was awarded funding from the National Institutes of Ageing (NIA) through the World Health Organization (WHO) to conduct a cross sectional survey (Wave 1) entitled 'The direct and indirect effects of HIV/ AIDS on the health and wellbeing of older people'. The participants were 400 people aged 50 years and over. The Wave 1 full study report was published in collaboration with the WHO.
During 2012-2013, further funding was obtained from the NIA through WHO and Wave 2 of the survey was conducted with 422 older people aged 50 years and over. Efforts were made to trace all participants from Wave 1 who were still alive during Wave 2. The Wave 2 full study report was published in collaboration with the WHO. In addition, a number of papers have been published from the Wave 1 and 2 data. We have obtained funding to conduct Wave 3 (2015) and Wave 4 (2018) from NIA through WHO.
This dataset is from wave 3 of the study. All participants seen in Wave 1 and Wave 2 of the study who are still alive were traced and invited to participate. We administered a questionnaire and conducted the biological sampling and clinical performance testing. The Wave 3 questionnaire and other tests are similar to those used in Wave 1 and Wave 2. The questionnaire and the data collection process was an electronic capture system.
Older adults who have died were replaced and a further 403 participants were added to achieve a sample size within the HIV positive and HIV negative groups of people aged 50 years and older.
The goal of the study is to contribute to the evidence base to guide the development and implementation of health programmes to meet older people's needs, especially those who have offspring infected or dead due to HIV/AIDS but also older people who are infected with HIV themselves. The basic research questions of the study is: (a) What are the effects of HIV/AIDS and its treatment on the health status (physical and mental) of older people? (b) What are the effects of HIV/AIDS on the income and social situation of older people? (c) What are the family tasks and responsibilities of older people who have offspring infected or dead due to HIV/AIDS and how do they differ from those of older people who do not have an offspring infected or dead due to HIV/AIDS? (d) In addition, it will be possible to assess risk factors for mortality among older people.
Participants will be asked for consent to participate in the various sections of the study and for storage and future epi-genetic studies from the saliva sample.
The overall goal of the study is to describe longitudinally the survival, health and wellbeing of older people who are directly and indirectly affected by HIV/AIDS, with special attention to the effects of the introduction of ART.
Study objectives
1. To describe the effects of HIV (with and without ART) on the (physical and mental) health and wellbeing of older people.
2. To determine the effects of HIV in older people especially older women on their social situation, with special focus on care giving.
3. Describe some of the biomarkers associated with chronic inflammation and immune function in the ageing process.
4. To document the risk factors for mortality among older people affected and infected with HIV.
During 2012-2013, further funding was obtained from the NIA through WHO and Wave 2 of the survey was conducted with 422 older people aged 50 years and over. Efforts were made to trace all participants from Wave 1 who were still alive during Wave 2. The Wave 2 full study report was published in collaboration with the WHO. In addition, a number of papers have been published from the Wave 1 and 2 data. We have obtained funding to conduct Wave 3 (2015) and Wave 4 (2018) from NIA through WHO.
This dataset is from wave 3 of the study. All participants seen in Wave 1 and Wave 2 of the study who are still alive were traced and invited to participate. We administered a questionnaire and conducted the biological sampling and clinical performance testing. The Wave 3 questionnaire and other tests are similar to those used in Wave 1 and Wave 2. The questionnaire and the data collection process was an electronic capture system.
Older adults who have died were replaced and a further 403 participants were added to achieve a sample size within the HIV positive and HIV negative groups of people aged 50 years and older.
The goal of the study is to contribute to the evidence base to guide the development and implementation of health programmes to meet older people's needs, especially those who have offspring infected or dead due to HIV/AIDS but also older people who are infected with HIV themselves. The basic research questions of the study is: (a) What are the effects of HIV/AIDS and its treatment on the health status (physical and mental) of older people? (b) What are the effects of HIV/AIDS on the income and social situation of older people? (c) What are the family tasks and responsibilities of older people who have offspring infected or dead due to HIV/AIDS and how do they differ from those of older people who do not have an offspring infected or dead due to HIV/AIDS? (d) In addition, it will be possible to assess risk factors for mortality among older people.
Participants will be asked for consent to participate in the various sections of the study and for storage and future epi-genetic studies from the saliva sample.
The overall goal of the study is to describe longitudinally the survival, health and wellbeing of older people who are directly and indirectly affected by HIV/AIDS, with special attention to the effects of the introduction of ART.
Study objectives
1. To describe the effects of HIV (with and without ART) on the (physical and mental) health and wellbeing of older people.
2. To determine the effects of HIV in older people especially older women on their social situation, with special focus on care giving.
3. Describe some of the biomarkers associated with chronic inflammation and immune function in the ageing process.
4. To document the risk factors for mortality among older people affected and infected with HIV.
Kind of Data
Survey data; process-produced data from the laboratory
Unit of Analysis
Questionnaire, biological sampling and clinical performance units.
Version
Version Description
V2.0.0
Scope
Topics
| Topic | Vocabulary | URI |
|---|---|---|
| Older people, HIV, ageing, frailty, South Africa | Africa Health Research Institute | www.ahri.org |
Keywords
| Keyword | Vocabulary | URI |
|---|---|---|
| Health and aging, HIV in older people | Africa Health Research Institute | www.ahri.org |
Coverage
Geographic Coverage
Demographic surveillance area of the Africa Health Research Institute.
Universe
A description of the population covered by the data in the file; the group of persons or other elements that are the object of the study and to which the study results refer. Age, nationality, and residence commonly help to delineate a given universe, but any of a number of factors may be involved, such as age limits, sex, marital status, race, ethnic group, etc. The universe may consist of elements other than persons, such as specimen, sample or isolate. In general, it should be possible to tell from the description of the universe whether a given individual or element (hypothetical or real) is a member of the population under study. Also known as universe of interest, population of interest, and target population.
Study setting:
The demographic surveillance area of the Somkhele site of the Africa Health Research Institute (AHRI) (previously known as the Africa Centre for Health and Population Studies) was the study setting.
Study population and recruitment of participants:
In WOPS Wave 3, we surveyed all participants who were seen during Wave I and Wave 2 who were still living. For those who have died, we obtained information on mortality from the next of kin or relatives. Additional participants were recruited randomly until an overall sample size of 600 was achieved. We tried to ensure that we attempt to recruit replacements who are both infected and affected by HIV to retain the mix of different types of experience of HIV within the cohort. This resulted in 803 HIV positive and negative participants eventually being enrolled into the cohort.
Study groups:
At initial recruitment, WOPS (Wave 1 and 2), study participants were equally divided into five study groups
The five study groups include:
1. Older people who were HIV-infected but not yet on ART
2. Older people who were HIV-infected and on ART
3. Older people who had a child living with HIV
4. Older people who had a child who died of AIDS-related illness
5. Older people who were not HIV infected, had no known adult HIV infection in the family and had not lost an adult child due to HIV.
This balance of experience of living with/without HIV/AIDS and/or caring for someone with HIV/AIDS will be maintained for Wave 3, with replacements for people who have died or moved away for each group.
Study setting:
The demographic surveillance area of the Somkhele site of the Africa Health Research Institute (AHRI) (previously known as the Africa Centre for Health and Population Studies) was the study setting.
Study population and recruitment of participants:
In WOPS Wave 3, we surveyed all participants who were seen during Wave I and Wave 2 who were still living. For those who have died, we obtained information on mortality from the next of kin or relatives. Additional participants were recruited randomly until an overall sample size of 600 was achieved. We tried to ensure that we attempt to recruit replacements who are both infected and affected by HIV to retain the mix of different types of experience of HIV within the cohort. This resulted in 803 HIV positive and negative participants eventually being enrolled into the cohort.
Study groups:
At initial recruitment, WOPS (Wave 1 and 2), study participants were equally divided into five study groups
The five study groups include:
1. Older people who were HIV-infected but not yet on ART
2. Older people who were HIV-infected and on ART
3. Older people who had a child living with HIV
4. Older people who had a child who died of AIDS-related illness
5. Older people who were not HIV infected, had no known adult HIV infection in the family and had not lost an adult child due to HIV.
This balance of experience of living with/without HIV/AIDS and/or caring for someone with HIV/AIDS will be maintained for Wave 3, with replacements for people who have died or moved away for each group.
Producers and sponsors
Primary investigators
| Name | Affiliation |
|---|---|
| Professor Janet Seely | AHRI; LSHTM |
| Dr Anita Edwards | AHRI |
Producers
| Name |
|---|
| Africa Health Research Institute |
Funding Agency/Sponsor
| Name | Abbreviation | Role |
|---|---|---|
| WHO | SAGE | Funder |
Other Identifications/Acknowledgments
| Name | Affiliation | Role |
|---|---|---|
| Wilkinson, Eduan | KwaZulu-Natal Research Innovation Sequencing Platform | Cleaned, aligned and help analyse the sequence data. |
Data Collection
Dates of Data Collection
| Start | End |
|---|---|
| 2017-04-01 | 2017-12-04 |
Data Processing
Data Editing
Assays were performed on Dry Blood Spots (DBS) in the Durban based laboratory of AHRI.
Assay results were presented in the standard LIMS file format.
Assay results were presented in the standard LIMS file format.
Access policy
Access conditions
1. The representative of the Receiving Organization agrees to comply with the following conditions:
2. Access to the restricted data will be limited to the Lead Researcher and other members of the research team listed in this request.
3. Copies of the restricted data or any data created on the basis of the original data will not be copied or made available to anyone other than those mentioned in this Data Access Agreement, unless formally authorized by the Data Archive.
4. The data will only be processed for the stated statistical and research purpose. They will be used for solely for reporting of aggregated information, and not for investigation of specific individuals or organizations. Data will not in any way be used for any administrative, proprietary or law enforcement purposes.
5. The Lead Researcher must state if it is their intention to match the restricted microdata with any other micro-dataset. If any matching is to take place, details must be provided of the datasets to be matched and of the reasons for the matching. Any datasets created as a result of matching will be considered to be restricted and must comply with the terms of this Data Access Agreement.
6. The Lead Researcher undertakes that no attempt will be made to identify any individual person, family, business, enterprise or organization. If such a unique disclosure is made inadvertently, no use will be made of the identity of any person or establishment discovered and full details will be reported to the Data Archive. The identification will not be revealed to any other person not included in the Data Access Agreement.
7. The Lead Researcher will implement security measures to prevent unauthorized access to licensed microdata acquired from the Data Archive. The microdata must be destroyed upon the completion of this research, unless the Data Archive obtains satisfactory guarantee that the data can be secured and provides written authorization to the Receiving Organization to retain them. Destruction of the microdata will be confirmed in writing by the Lead Researcher to the Data Archive.
8. Any books, articles, conference papers, theses, dissertations, reports, or other publications that employ data obtained from the Data Archive will cite the source of data in accordance with the citation requirement provided with the dataset.
9. An electronic copy of all reports and publications based on the requested data will be sent to the Data Archive.
10. The original collector of the data, the Data Archive, and the relevant funding agencies bear no responsibility for use of the data or for interpretations or inferences based upon such uses.
11. This agreement will come into force on the date that approval is given for access to the restricted dataset and remain in force until the completion date of the project or an earlier date if the project is completed ahead of time.
If there are any changes to the project specification, security arrangements, personnel or organization detailed in this application form, it is the responsibility of the Lead Researcher to seek the agreement of the Data Archive to these changes. Where there is a change to the employer organization of the Lead Researcher this will involve a new application being made and termination of the original project.
12. Breaches of the agreement will be taken seriously and the Data Archive will take action against those responsible for the lapse if willful or accidental. Failure to comply with the directions of the Data Archive will be deemed to be a major breach of the agreement and may involve recourse to legal proceedings. The Data Archive will maintain and share with partner data archives a register of those individuals and organizations which are responsible for breaching the terms of the Data Access Agreement and will impose sanctions on release of future data to these parties.
2. Access to the restricted data will be limited to the Lead Researcher and other members of the research team listed in this request.
3. Copies of the restricted data or any data created on the basis of the original data will not be copied or made available to anyone other than those mentioned in this Data Access Agreement, unless formally authorized by the Data Archive.
4. The data will only be processed for the stated statistical and research purpose. They will be used for solely for reporting of aggregated information, and not for investigation of specific individuals or organizations. Data will not in any way be used for any administrative, proprietary or law enforcement purposes.
5. The Lead Researcher must state if it is their intention to match the restricted microdata with any other micro-dataset. If any matching is to take place, details must be provided of the datasets to be matched and of the reasons for the matching. Any datasets created as a result of matching will be considered to be restricted and must comply with the terms of this Data Access Agreement.
6. The Lead Researcher undertakes that no attempt will be made to identify any individual person, family, business, enterprise or organization. If such a unique disclosure is made inadvertently, no use will be made of the identity of any person or establishment discovered and full details will be reported to the Data Archive. The identification will not be revealed to any other person not included in the Data Access Agreement.
7. The Lead Researcher will implement security measures to prevent unauthorized access to licensed microdata acquired from the Data Archive. The microdata must be destroyed upon the completion of this research, unless the Data Archive obtains satisfactory guarantee that the data can be secured and provides written authorization to the Receiving Organization to retain them. Destruction of the microdata will be confirmed in writing by the Lead Researcher to the Data Archive.
8. Any books, articles, conference papers, theses, dissertations, reports, or other publications that employ data obtained from the Data Archive will cite the source of data in accordance with the citation requirement provided with the dataset.
9. An electronic copy of all reports and publications based on the requested data will be sent to the Data Archive.
10. The original collector of the data, the Data Archive, and the relevant funding agencies bear no responsibility for use of the data or for interpretations or inferences based upon such uses.
11. This agreement will come into force on the date that approval is given for access to the restricted dataset and remain in force until the completion date of the project or an earlier date if the project is completed ahead of time.
If there are any changes to the project specification, security arrangements, personnel or organization detailed in this application form, it is the responsibility of the Lead Researcher to seek the agreement of the Data Archive to these changes. Where there is a change to the employer organization of the Lead Researcher this will involve a new application being made and termination of the original project.
12. Breaches of the agreement will be taken seriously and the Data Archive will take action against those responsible for the lapse if willful or accidental. Failure to comply with the directions of the Data Archive will be deemed to be a major breach of the agreement and may involve recourse to legal proceedings. The Data Archive will maintain and share with partner data archives a register of those individuals and organizations which are responsible for breaching the terms of the Data Access Agreement and will impose sanctions on release of future data to these parties.
Metadata production
DDI Document ID
DDI.AHRI.WOPS.WaveIII.2018.v2
Producers
| Name | Abbreviation |
|---|---|
| Africa Health Research Institute | AHRI |