There is an increasing burden of chronic illness in low and middle income countries, driven by TB/HIV, as well as non-communicable diseases. Few health systems are organized to meet the needs of chronically ill patients, and patients' perspectives on the difficulties of accessing care need to be better understood, particularly in poor resourced settings, to achieve this end. This paper describes the experience of poor households attempting to access chronic care in a rural area of South Africa. A household survey (n = 1446 individuals) was combined with qualitative longitudinal research that followed 30 case study households over 10 months. Illness narratives and diaries provided descriptive textual data of household interactions with the health system. In the survey 74% of reported health problems were 'chronic', 48% of which had no treatment action taken in the previous month. Amongst the case study households, of the 34 cases of chronic illness, only 21 (62%) cases had an allopathic diagnosis and only 12 (35%) were receiving regular treatment. Livelihoods exhausted from previous illness and death, low income, and limited social networks, prevented consultation with monthly expenditure for repeated consultations as high as 60% of income. Interrupted drug supplies, insufficient clinical services at the clinic level necessitating referral, and a lack of ambulances further hampered access to care. Poor provider-patient interaction led to inadequate understanding of illness, inappropriate treatment action, 'healer shopping', and at times a break down in cooperation, with the patient 'giving up' on the public health system. However, productive patient-provider interactions not only facilitated appropriate treatment action but enabled patients to justify their need for financial assistance to family and neighbours, and so access care. In addition, patients and their families with understanding of a disease became a community resource drawn on to assist others. In strengthening the public sector it is important not only to improve drug supply chains, ambulance services, referral systems and clinical capacity at public clinics, and to address the financial constraints faced by the socially disadvantaged, but also to think through how providers can engage with patients in a way that strengthens the therapeutic alliance.

https://researchonline.lshtm.ac.uk/4987/1/1472%2D6963%2D9%2D75.pdf

Affordability, availability and acceptability barriers to health care for the chronically ill: Longitudinal case studies from South Africa

The authors use a 13-year panel of individuals in Tanzania to assess how adult mortality shocks affect both short and long-run consumption growth of surviving household members. Using unique data which tracks individuals from 1991 to 2004, they examine consumption growth, controlling for a set of initial community, household and individual characteristics. The effect is identified using the sample of households in 2004 which grew out of baseline households. The authors find robust evidence that an affected household will see consumption drop 7 percent within the first five years after the adult death. With high growth in the sample over this time period, this creates a 19 percentage point growth gap with the average household. There is some evidence of persistent effects of these shocks for up to 13 years, but these effects are imprecisely estimated and not significantly different from zero. The impact of female adult death is found to be particularly severe.

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Adult Mortality and Consumption Growth in the Age of HIV/AIDS

We analyze funeral arrangements following the deaths of 3,751 people who died between January 2003 and December 2005 in the Africa Centre Demographic Surveillance Area. We find that, on average, households spend the equivalent of a year's income for an adult's funeral, measured at median per capita African (Black) income. Approximately one-quarter of all individuals had some form of insurance, which helped surviving household members defray some fraction of funeral expenses. However, an equal fraction of households borrowed money to pay for the funeral. We develop a model, consistent with ethnographic work in this area, in which households respond to social pressure to bury their dead in a style consistent with the observed social status of the household and that of the deceased. Households that cannot afford a funeral commensurate with social expectations must borrow money to pay for the funeral. The model leads to empirical tests, and we find results consistent with our model of household decision-making.

Paying the Piper: The High Cost of Funerals in South Africa

This study explores the consequences of a maternal death to households in rural Western Kenya focusing particularly on the immediate financial and economic impacts. Between September 2011 and March 2013 all households in the study area with a maternal death were surveyed. Data were collected on the demographic characteristics of the deceased woman; household socio-economic status; a history of the pregnancy and health care access and utilization; and disruption to household functioning due to the maternal death. These data were supplemented by in-depth and focus group discussions. The health service utilization costs associated with maternal deaths were significantly higher, due to more frequent service utilization as well as due to the higher cost of each visit suggesting more involved treatments and interventions were sought with these women. The already high costs incurred by cases during pregnancy were further increased during delivery and postpartum mainly a result of higher facility-based fees and expenses. Households who experienced a maternal death spent about one-third of their annual per capita consumption expenditure on healthcare access and use as opposed to at most 12% among households who had a health pregnancy and delivery. Funeral costs were often higher than the healthcare costs and altogether forced households to dis-save, liquidate assets and borrow money. What is more, the surviving members of the households had significant redistribution of labor and responsibilities to make up for the lost contributions of the deceased women. Kenya is in the process of instituting free maternity services in all public facilities. Effectively implemented, this policy can lift a major economic burden experienced by a very large number of household who seek maternal health services which can be catastrophic in complicated cases that result in maternal death. There needs to be further emphasis on insurance schemes that can support households through catastrophic health spending.

/pdf/the-economic-burden-of-maternal-mortality-on-households-4i756jrdbh.pdf

The economic burden of maternal mortality on households: evidence from three sub-counties in rural western Kenya.

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Primary Health Care: Theory and Practice

Thirty two studies of the impact of HIV/AIDS on households conducted over the last decade were reviewed. The direct and indirect costs of HIV/AIDS to households increase with severity of illness and ultimately death. HIV/AIDS morbidity and mortality affect household income and expenditure patterns. Households employ various survival strategies to alleviate loss of labour and income, survive the financial cost and optimise the use of safety networks. Various gaps were found in the literature, which future studies could explore. Household surveys should be multi-disciplinary and longitudinal in nature so that the full impact of HIV/AIDS could be assessed over time.

The impact of hiv/aids morbidity and mortality on households – a review of household studies

This article reports the survival strategies used by households in Soweto with at least one HIV/AIDS-affected member. Data were collected on four occasions between September 2002 and August 2003 from each household, based on diary records and supplemented by interviews with the financial head of the household. In terms of frequency of use and the contribution made to the finances of affected households, the most important survival strategies were: the sick member continuing at work for as long as possible, borrowing from friends and relatives, receiving transfers from relatives, and taking up social grants. These results are broadly similar to those reported by Booysen and associates in their Free State studies.

Survival strategies of HIV/AIDS – affected households in Soweto

The encouragement of care of orphans and vulnerable children by non-profit organisations (NPOs) is a major policy response to the HIV and AIDS epidemic in South Africa. The purpose of this article is to present a quality–cost model with five performance indicators for quality and two for costs and to test these against actual performance using data collected from nine rural and urban organisations in 2004 and 2005. Six NPOs had acceptable cost but all had unacceptable quality scores; three had unacceptable cost and unacceptable quality scores. Each rural caregiver had many more orphans and vulnerable children beneficiaries than their urban counterparts but made fewer total visits. As a result, urban beneficiaries received, on average, 3.5 times more visits than their rural counterparts. The results suggest the need for different performance indicators and expectations for rural and urban NPOs and that monitoring and evaluation using the model could improve horne community-based care services.

Cost and quality performance indicators for home community-based care services to orphans and vulnerable children

This article has two main aims: to provide data on the cost of HIV/AIDS to urban South African households and to contribute to the development of a methodology that could be used in later studies. Data on the costs of HIV/AIDS-related morbidity and mortality were collected from a purposively selected sample of households in Soweto on four occasions between September 2002 and August 2003. The sample comprised 61 affected households, which had at least one member with a CD4 count of 200 or less at the start of the study, and 52 non-affected households. Three types of costs were examined – financial, economic and the present value of lost future earnings. The data suggest that the financial costs of morbidity and mortality were three and two times greater, respectively, for affected households than for those non-affected households that reported disease and/or death. Mortality costs far exceeded morbidity costs. The present value of lost future earnings, where the deceased had previously been an income earner, proved to be the major cost incurred by an affected household.

/pdf/the-cost-of-hiv-aids-related-morbidity-and-mortality-to-8o6or9dp9e.pdf

Veni Naidu

Papers

The impact of hiv/aids morbidity and mortality on households – a review of household studies

Survival strategies of HIV/AIDS – affected households in Soweto

Cost and quality performance indicators for home community-based care services to orphans and vulnerable children

The cost of HIV/AIDS-related morbidity and mortality to households: Preliminary estimates for Soweto