1. Poverty dynamics across the life course Janet Seeley University of East Anglia and MRC/UVRI Uganda Research Unit on AIDS

2. The setting 2

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4. Background  The MRC/UVRI General Population Cohort (GPC) study was established in 1989 in 15 rural villages (expanded to 25 villages in 2000) in a sub-county of Masaka/Kalungu district in Uganda.  Annual rounds of socio-demographic/census and, since 2012, biennial rounds of medical surveys  All age groups included.  Approx 20,000 people in ~4000 households  Sub and linked studies undertaken to answer specific research questions 4

5. Socio-economic status Every four years information compiled on – roof-materials used and the state of the roof, – size of the house and number of occupants per room and – ownership of a list of household items. The list of household items has been modified slightly since the baseline in 1989/1990 5

6. Martha Classified as `poor’ in 1989/1990... and `poor’ in 2005/2006 6

7. Link with WHO Study on Ageing and Health (SAGE)  SAGE is a longitudinal study of health among older people in six countries: China, India, Russia, Mexico, Ghana, and South Africa (first round 2008, second round 2011)  Use of the main modules of the SAGE instruments in quantitative component of the study  Older people defined as  Quantitative component (WHO) -- people 50 and over  Qualitative component (Cordaid) – people 60 and over 7

8. Study design - quantitative part 5 groups of study participants Older person HIV negative and lost a child due to AIDS Older person HIV negative and has adult child living with HIV (may be on Anti-Retroviral Therapy [ART]) Comparison group: HIV negative, no AIDS-related disease in family Older person HIV positive and on ART for at least one year Older person HIV positive and waiting for ART (or <3 months on ART) 8

9. Quantitative component sample 100 participants in each group – 50/50 urban - rural, – at least 30% men Age: 50 years and above; however good representation of over 60 years 9

10. Quantitative data collection  General: background, support networks, social networks etc.  Health and well-being: perceived health overall and in 8 domains: e.g. mobility, self-care, pain and discomfort, vision  Chronic conditions: e.g. arthritis, depression, heart problems  Injuries unintentional and intentional  Health seeking behaviour and experiences  Caregiving and care receiving: personal - emotional- physical- financial Plus clinical and biological tests:  Performance tests; grip strength, walking test, cognitive ability test  Blood pressure; height and weight, etc  Blood spotted filter paper for Hb, lipids, cholesterol, HbA1C and others HIV positive groups - Clinical record review 10

11. Qualitative data collection  40 older people (20 in Kalungu and 20 in Entebbe) selected from WHO sample;  Visited monthly for 12 months;  Qualitative interviews to collect:  Life history  Oral diary for one week a month covering day to day activities and health and wellbeing 11

12. Depression Symptoms of depression have been found to be common among people living with HIV in different settings Care-givers of people infected by HIV have also been found to suffer from high levels of depression – Increasing number of older people living with HIV (many are also caregivers) 12

13. Depression -- findings The quantitative study identified cases of depression according to two methods: – the participants were asked whether or not they had ever been diagnosed with depression. Twenty-two people (4.3%) in the larger study reported that they had indeed been previously diagnosed with depression 13

14. Depression – findings 2 Secondly, participants were asked a series of questions about how they felt during the 12 months prior to the survey, to assess the prevalence of depression that had not been formally diagnosed. –23% of the 510 participants (comprising all 5 groups) had experienced an episode of depression during the previous year 14

15. Martha These days at times I wish I could run away. Since the death of my child I think about many things but then when I think about going away, who should I leave my grandchildren’s land to? I stay in this little house and fail to sleep from worry! 15

16. Despondency Despondency and feelings of unhappiness attributed to physical health problems (related to ageing as well as HIV) Other factors such as financial problems, isolation, loneliness and lack of support. – Experiences and perceptions of all these factors influenced participants’ subjective explanations of the causes of unhappiness, frustration, despondency and even depression. 16

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18. Depression and despondency While we observed that feelings of depression were frequently experienced by many of the people in our study, the state of `being depressed’ was not constant – hence the use of the term `despondent’ 18

19. Poverty dynamics and the life course Poverty – in the broadest terms of wealth, relationships, health, wellbeing – vary across most people’s lives in our research setting. –“Quality of life is the gap between what a person is capable of doing and being, and what they would like to do and be: in essence, it is the gap between capability reality and expectations” (Ruta et al., 2007:402) 19

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21. References Seeley, J., S. Biraro, L.A. Shafer, P. Nasirumbi, S. Foster, J. Whitworth, and H. Grosskurth, Using in-depth qualitative data to enhance our understanding of quantitative results regarding the impact of HIV and AIDS on households in rural Uganda. Social Science and Medicine, 2008. 67(9): 1434-1446. Wright, S., F. Zalwango, J. Seeley, J. Mugisha, and F. Scholten. Despondency among HIV-positive older men and women in Uganda. Journal of Cross-Cultural Gerontology, 2012. 27(4): 319- 333. EPub: http://www.springerlink.com/content/g47020758751k818/ http://www.springerlink.com/content/g47020758751k818/ Ruta, D., L. Camfield and C. Donaldson. Sen and the art of quality of life maintenance: Towards a general theory of quality of life and its causation. Journal of Socio-Economics, 2007. 36: 397-423. 21