No. 40: Migration and Domestic Workers: Worlds of Work, Health and Mobility in Johannesburg

South Africa is in the middle of a well-documented HIV/AIDS epidemic. Infection rates were calculated to be 22% of the adult population in 2003. A number of different reasons have been advanced to explain the HIV/AIDS epidemic in South Africa. They include poverty and economic marginalization; differing strains of HIV; and high rates of sexually transmitted diseases. However, migration patterns in Southern Africa have also been identified as one of the keys to understanding the high rates of infection in the region. Male migrants have been the focus of research on the relationship between HIV and migration. In the same way that the vulnerabilities of migrant women to HIV have thus far largely remained unexplored, the lives of migrant women have also received far less attention than the lives of their male counterparts. This study examines the migrant and health experiences of domestic workers in Johannesburg, as well as some of their points of vulnerability to HIV. In 2004, domestic work was the second largest sector of employment for black women in South Africa. And, as this study shows, a defining characteristic of domestic workers in Johannesburg is their status as migrant workers. Given the importance of domestic work for women workers in South Africa, and the potential for their working conditions to affect their access to health care and their vulnerability to HIV infection, the study explored questions around migrancy, working conditions, access to health care and the experiences of, and vulnerability to HIV of domestic workers working in Johannesburg. The study is based on interviews with 1,100 female domestic workers employed in the City of Johannesburg. A defining feature of the lives of this cohort of domestic workers was that they were overwhelmingly migrant workers; over 86% had a home outside Johannesburg and over 70% of those with other homes really wanted to be living there. Three-quarters of those with other homes had been working in Johannesburg for more than five years. The majority were from South Africa, and only 6% of the sample came from other countries, all in the SADC. Another defining characteristic of the lives of domestic workers related to their migrant status was separation and isolation. Although the majority of the women interviewed were aged between 21 and 50 years, over 40% identified themselves as single, widowed, divorced or separated. The majority of those with long-term partners or husbands lived apart from their partners and children. Only a quarter of respondents lived with their long-term partner or husband. Over two-thirds lived on their employers’ property. Most of these women were not allowed visits from their families and friends. Their friends were mainly other domestic workers, neighbours and other church members. Their working lives were hard, as many employers were not even meeting the minimum standards of employment set out by the Department of Labour. The majority of the sample worked for one employer (88%) and almost 45% worked six or seven days a week. Most worked between eight and ten hours a day. Their incomes do not reflect their long working weeks. Although over half earned between R501 and R1000 per month, over a fifth earned less than R500 per month. Despite their working conditions, the women did not report problems accessing health services when they got sick. Those who had used health services overwhelmingly used allopathic government clinics and hospitals. Almost a third had used family planning services in the previous year, almost half had visited a clinic, and almost a third a doctor. Only 15% had chosen to visit a traditional healer. Of these, over a third had gone for non-health related matters. Although almost half of the sample were single, only 10% had not had a sexual partner in the past five years. Since only a quarter of those with long-term partners or husbands actually lived with them, opportunities for either partner to have other sexual partners are magnified, and provide opportunities for potentially risky behaviour. These women experienced similar levels of violence in and outside their relationships as other women in South Africa. Almost a fifth had been pushed, shoved, slapped or had things thrown at them in the previous year, 6% had been raped, and 6% forced to have sex by their partner when they did not want to. Violence, rape and coercive sex all increase the vulnerability of women to HIV infection. Another defining characteristic of this group of women was the lack of condom use. Over 60% of the sample had never used a condom in their lives. But, only 12% did not know where they could get free condoms. Also disturbing is that the majority of those who used condoms used them irregularly with only a fifth of condom users saying they used condoms all the time. One of the reasons for low condom usage could lie with the low levels of knowledge around HIV/AIDS issues among these women. Almost a third were unable to describe how to have safe sex. Levels of knowledge around antiretroviral treatment and other HIV/AIDS related issues were also low. Only 16% knew about antiretroviral therapy. Low levels of condom usage could also reflect perceptions of vulnerability, as only 11% said they thought they might have been infected. Less than a third had been tested for HIV and only 26 of the women interviewed had tested positive. Low levels of knowledge and condom use appear to be largely unchanged by the experiences of the women with the virus. Over a third knew someone who had died of AIDS, a similar proportion had a member of their family who was HIV positive, and almost a fifth had physically cared for or supported someone with AIDS. Overall, it seems that migrancy and work shape these women’s lives and affect their vulnerability to HIV. For many, particularly those who live in or on their employers property, their social lives are restricted by their working and living conditions. This social isolation may protect domestic workers as it reduces opportunities for starting new relationships. Conversely, their migrant status, separation from partners, and for many, restrictions on when and where they can see their partners and boyfriends, may make them more vulnerable. Low levels of condom use, given the circumstances of their relationships, and low levels of knowledge around issues related to HIV/AIDS are of concern. The majority of these women look to television and listen to the radio to get information. The majority attend health services at some point during the year. Therefore, it seems that this cohort of women workers in Johannesburg are not being reached by health promotion campaigns relating to HIV/AIDS education, prevention and treatment

Exploring the meanings of death and dying and the burden of living with HIV/AIDS in Soweto, a South African township

Includes bibliographical references (leaves 72-75).The main study purpose was to inform a proposed model of palliative care in Soweto, the N'doro model, to identify an acceptable approach for a palliative care service in Soweto, and find out which issues were of concern to the people who would be potentially receiving these services. The aim is to understand meaning of death and dying and the burden of living with HIV/AIDS

Maintaining wellbeing for South Africans receiving ART: The burden of pain and symptoms is greater with longer ART exposure

Background. Physical and psychological symptom burden among people with HIV infection is associated with poor quality of life, poorer treatment adherence, viral rebound and risk behaviour. Symptomatology has not been investigated among outpatients in sub-Saharan Africa. Objective. To measure the seven-day period prevalence, burden and correlates of pain and other physical and psychological symptoms among HIV patients receiving antiretroviral therapy (ART).Methods. This was a cross-sectional self-report study. A total of 378 patients were interviewed using validated tools in three South African public sector clinics.Results. The most prevalent symptoms were feeling sad (64%), feeling irritable (61.6%), worry (60.8%), numbness and tingling in hands/ feet (59.8%), and sexual problems (51%). In multivariate analysis, later disease stage was associated with worse psychological symptom burden (β=0.359; 95% confidence interval (CI) 0.202 - 0.516; p≤0.001), global symptom burden (β=0.365; 95% CI 0.204 - 0.526; p<0.001) and number of symptoms (β=0.308; 95% CI 0.150 - 0.465; p<0.001). Those receiving treatment for a greater number of years also reported higher burden for physical (β=0.083; 95% CI 0.037 - 0.129; p≤0.001), psychological (β=0.068; 95% CI 0.019 - 0.117; p=0.007) and global symptoms (β=0.065; 95% CI 0.016 - 0.115; p=0.010), and a greater number of symptoms (β=0.081; 95% CI 0.032 - 0.130; p=0.001). Conclusions. The data reveal a high symptom burden despite treatment. Detailed symptom assessment and control continues to be required in the era of treatment.

Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale

<p>Abstract</p> <p>Background</p> <p>Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study.</p> <p>Methods</p> <p>Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets).</p> <p>Results</p> <p>The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit.</p> <p>Conclusions</p> <p>The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.</p

Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study

Objectives To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field

Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study

<p>Abstract</p> <p>Background</p> <p>Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool.</p> <p>Methods</p> <p>A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (<it>Function, Symptom, Interpersonal, Well being, Transcendent</it>) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the <it>Total QOL </it>score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda.</p> <p>Results</p> <p>285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean <it>Total </it>score 17.32 (possible range 0 to 30). Patients scored most poorly on <it>Function </it>(mean 0.21), followed by <it>Well being </it>(2.59), <it>Symptoms </it>(5.38), <it>Transcendent </it>(5.50), <it>Interpersonal </it>(9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on <it>Well being </it>(<it>Z </it>= -2.778, p = 0.005), <it>Transcendence </it>(<it>Z </it>= -2.693, p = 0.007) and <it>Total QOL </it>(<it>Z </it>= -2.564, p = 0.01). Global QOL score was most weakly correlated with <it>Total QOL </it>(r = 0.37) and the <it>Transcendent </it>subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA.</p> <p>Conclusions</p> <p>Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the <it>Function </it>domain warrants further research.</p

Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa

Background: Despite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS). Methods: Patients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman’s rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed. Results: 315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman’s rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p  F > J (0.96–0.89) in ROC analysis. Conclusions: Hands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score

No. 40: Migration and Domestic Workers: Worlds of Work, Health and Mobility in Johannesburg

South Africa is in the middle of a well-documented HIV/AIDS epidemic. Infection rates were calculated to be 22% of the adult population in 2003. A number of different reasons have been advanced to explain the HIV/AIDS epidemic in South Africa. They include poverty and economic marginalization; differing strains of HIV; and high rates of sexually transmitted diseases. However, migration patterns in Southern Africa have also been identified as one of the keys to understanding the high rates of infection in the region. Male migrants have been the focus of research on the relationship between HIV and migration. In the same way that the vulnerabilities of migrant women to HIV have thus far largely remained unexplored, the lives of migrant women have also received far less attention than the lives of their male counterparts. This study examines the migrant and health experiences of domestic workers in Johannesburg, as well as some of their points of vulnerability to HIV. In 2004, domestic work was the second largest sector of employment for black women in South Africa. And, as this study shows, a defining characteristic of domestic workers in Johannesburg is their status as migrant workers. Given the importance of domestic work for women workers in South Africa, and the potential for their working conditions to affect their access to health care and their vulnerability to HIV infection, the study explored questions around migrancy, working conditions, access to health care and the experiences of, and vulnerability to HIV of domestic workers working in Johannesburg. The study is based on interviews with 1,100 female domestic workers employed in the City of Johannesburg. A defining feature of the lives of this cohort of domestic workers was that they were overwhelmingly migrant workers; over 86% had a home outside Johannesburg and over 70% of those with other homes really wanted to be living there. Three-quarters of those with other homes had been working in Johannesburg for more than five years. The majority were from South Africa, and only 6% of the sample came from other countries, all in the SADC. Another defining characteristic of the lives of domestic workers related to their migrant status was separation and isolation. Although the majority of the women interviewed were aged between 21 and 50 years, over 40% identified themselves as single, widowed, divorced or separated. The majority of those with long-term partners or husbands lived apart from their partners and children. Only a quarter of respondents lived with their long-term partner or husband. Over two-thirds lived on their employers’ property. Most of these women were not allowed visits from their families and friends. Their friends were mainly other domestic workers, neighbours and other church members. Their working lives were hard, as many employers were not even meeting the minimum standards of employment set out by the Department of Labour. The majority of the sample worked for one employer (88%) and almost 45% worked six or seven days a week. Most worked between eight and ten hours a day. Their incomes do not reflect their long working weeks. Although over half earned between R501 and R1000 per month, over a fifth earned less than R500 per month. Despite their working conditions, the women did not report problems accessing health services when they got sick. Those who had used health services overwhelmingly used allopathic government clinics and hospitals. Almost a third had used family planning services in the previous year, almost half had visited a clinic, and almost a third a doctor. Only 15% had chosen to visit a traditional healer. Of these, over a third had gone for non-health related matters. Although almost half of the sample were single, only 10% had not had a sexual partner in the past five years. Since only a quarter of those with long-term partners or husbands actually lived with them, opportunities for either partner to have other sexual partners are magnified, and provide opportunities for potentially risky behaviour. These women experienced similar levels of violence in and outside their relationships as other women in South Africa. Almost a fifth had been pushed, shoved, slapped or had things thrown at them in the previous year, 6% had been raped, and 6% forced to have sex by their partner when they did not want to. Violence, rape and coercive sex all increase the vulnerability of women to HIV infection. Another defining characteristic of this group of women was the lack of condom use. Over 60% of the sample had never used a condom in their lives. But, only 12% did not know where they could get free condoms. Also disturbing is that the majority of those who used condoms used them irregularly with only a fifth of condom users saying they used condoms all the time. One of the reasons for low condom usage could lie with the low levels of knowledge around HIV/AIDS issues among these women. Almost a third were unable to describe how to have safe sex. Levels of knowledge around antiretroviral treatment and other HIV/AIDS related issues were also low. Only 16% knew about antiretroviral therapy. Low levels of condom usage could also reflect perceptions of vulnerability, as only 11% said they thought they might have been infected. Less than a third had been tested for HIV and only 26 of the women interviewed had tested positive. Low levels of knowledge and condom use appear to be largely unchanged by the experiences of the women with the virus. Over a third knew someone who had died of AIDS, a similar proportion had a member of their family who was HIV positive, and almost a fifth had physically cared for or supported someone with AIDS. Overall, it seems that migrancy and work shape these women’s lives and affect their vulnerability to HIV. For many, particularly those who live in or on their employers property, their social lives are restricted by their working and living conditions. This social isolation may protect domestic workers as it reduces opportunities for starting new relationships. Conversely, their migrant status, separation from partners, and for many, restrictions on when and where they can see their partners and boyfriends, may make them more vulnerable. Low levels of condom use, given the circumstances of their relationships, and low levels of knowledge around issues related to HIV/AIDS are of concern. The majority of these women look to television and listen to the radio to get information. The majority attend health services at some point during the year. Therefore, it seems that this cohort of women workers in Johannesburg are not being reached by health promotion campaigns relating to HIV/AIDS education, prevention and treatment

Restless worlds of work, health and migration: domestic workers in Johannesburg

The lives of migrant women have generally received far less attention than those of their male counterparts. Similarly, male migrants have been the focus of research on the relationship between migration and HIV/AIDS. Little attention has been paid to the vulnerability of female migrants themselves to HIV infection and their access to health care and treatment. Domestic work is the second largest sector of employment for black women in South Africa, and the largest for black women in Johannesburg and, as this article shows, most of these workers are migrants. Based on a survey of 1100 domestic workers in Johannesburg, the article explores the lives of domestic workers, focusing on their experience as migrants, their working conditions, use of health-care services and knowledge of and possible vulnerability to HIV/AIDS.