Water, Sanitation and Hygiene in Community- Based Care: Implications for Wellbeing for People Living with Hiv/Aids/Tb in Durban, South Africa

RESEARCH PAPER WATER, SANITATION AND HYGIENE IN COMMUNITY- BASED CARE: IMPLICATIONS FOR WELLBEING FOR PEOPLE LIVING WITH HIV/AIDS/TB IN DURBAN, SOUTH AFRICA

1C. Mulopo and O. Akintola 1,2 1Health Promotion Programme, Discipline of Psychology School of Applied Human Sciences, University of KwaZulu-Natal 2School of Human and Social Development, Nipissing University, North Bay, Canada Corresponding author: [email protected]

ABSTRACT Majority of the HIV/AIDS patients in South Africa receive health care services at home. How- ever, limited studies have been conducted to examine the water, sanitation and hygiene (WASH) situation in the homes of the care receivers and its impact on community-based care. The main objective of this study was to explore community health workers (CHW) perceptions on WASH in home-based care and the implications on people living with HIV/AIDS/TB, their family members and the CHW. Participants for this qualitative study were drawn from four community home-based care organizations in four marginalized communities in Durban providing care to HIV/AIDS/TB clients. Data was collected using participant observation of care-giving activities; semi-structured interviews with five home-based care project managers from the organizations and five focus group discussions with a total of 49 CHW. The study revealed that CHW had limited access to protective materials such as gloves and aprons and therefore tended to avoid carry- ing out activities that could help maintain proper hygiene in the homes for fear of infection. There was limited and unreliable access to water supply. CHW had to fetch water from immedi- ate neighbours or surrounding areas and this created a time burden for caregivers taking away the time spent with patients. Inadequate access to water influences sanitation and hygiene, and this affects the work of CHW. Government needs to respond promptly to the water and sanitation needs of marginalized communities with limited resources. The findings of the study had implications for policy on WASH and community-based care in low in-come communities.

Keywords : WASH, HIV/AIDS, Community-based care, Community health workers, Care-givers

INTRODUCTION Public Health England [PHE], and United Na- Unsafe and insufficient water, poor sanitation tions Office for Disaster Risk Reduction and hygiene are some of the factors contribut- [UNISDR], 2011). They can result in con- ing to poor health in low and middle-income strained medical treatment in health services countries (World Health Organization [WHO], and increase a community’s vulnerability

Journal of Science and Technology © KNUST April 2016 23 Mulopo and Akintola (Montgomery and Elimelech, 2007). It is esti- community-based care, water is used to bath mated that over 2 billion of the world’s popula- patients with HIV/AIDS, wash soiled clothing tion do not have access to adequate sanitation, and linen, keep the home environment clean, with sub-Saharan Africa having the highest take medication, cook food, and adopt hygienic proportion of 30% (WHO and UNICEF, 2006). practices to prevent the spread of infectious In sub-Saharan Africa 8 out of 10 people with- diseases (Yallew et al ., 2012). Unfortunately, out improved water live in rural areas and 9 out access to potable water, safe sanitation and of 10 people in rural areas practice open defe- good hygiene may become more difficult for cation (WHO, 2015). Approximately 115 peo- people living with HIV/AIDS due to their de- ple die every hour from diseases resulting from clining physical health and worsening eco- poor sanitation, poor hygiene and contaminated nomic status (Yallew et al ., 2012). A study water in Africa (WHO and UNICEF, 2006). In conducted in Botswana found that 66% of care- South Africa, close to 6 million people do not givers indicated that water shortage under- have access to safe drinking water (Department mined their daily activities (Ngwenya and of Water Affairs and Forestry [DWAF], 2008). Kgathi, 2006). Also, a study conducted by Ak- Furthermore, approximately 1.4 million house- intola and Hangulu (2014) in South Africa holds do not have access to a sanitation service found out that poor sanitation and hygiene and 3.8 million households have access but it is practices in homes and community-based care inadequate (DWAF, 2012). In addition to the presented a risk for TB and HIV transmission. WASH challenges that the world is currently Similarly, Blinkhoff, et al (2001) in their study facing, one of the most devastating diseases also found that home and community-based infecting people all over the world is HIV and care were associated with the high risk of infec- AIDS (Joint United Nation Programme for tion of HIV/AIDS and TB. HIV/AIDS [UNAIDS], 2010). Potgieter et al ., (2007) found, in a study con- South Africa has the highest number of indi- ducted in Limpopo South Africa that the prob- viduals living with HIV/AIDS in the world and lems associated with WASH served as a barrier in Sub-Saharan Africa (UNAIDS, 2013). The to the effective treatment of people living with national estimate of people living with HIV in HIV/AIDS in home-based care. In addition, one South Africa is 6,300,000 (UNAIDS, 2013). of the key findings by Potgieter and du Preez’s According to Akintola (2011), the high HIV (2012) study was that people living with HIV prevalence in South Africa has resulted in large and AIDS and households affected by HIV and numbers of patients seeking care at public hos- AIDS had substantially greater needs for pota- pitals. Many of these hospitals cannot cope ble water, safe sanitation and good hygiene. with the high influx of patients, so they send Ngwenya and Kgathi (2006) found that reduced patients with HIV/AIDS home to be cared for access to water supplies among households by their family members (Potgieter and du providing care and caregivers affected their day Preez, 2012; Akintola, 2006). Home and com- -to-day activities negatively. Although these munity-based care is one of the interventions to studies provide some information about WASH deal with the HIV epidemic in South Africa and HIV and AIDS care, they do not shed (Singh et al , 2011). People living with HIV/ enough light on WASH in home and commu- AIDS are vulnerable because their need for nity-based care. This study sought to explore clean water and good sanitation and hygiene caregivers’ perspectives about WASH in home practices increase as they struggle to cope with and community-based care. the disease (Water Aid report, 2010). Therefore it is crucial for individuals in home-based care METHODOLOGY to have access to clean water, and practice The study employed a range of research meth- proper sanitation and hygiene. In home and ods including participant observation, in-depth

Journal of Science and Technology © KNUST April 2016 Community health workers (CHW) perceptions on WASH ... 24 qualitative interviews as well as focus group 2) The relevance of water in relation to sanita- discussions. The explorative nature of qualita- tion; and tive research design was seen as most appropri- ate because of its flexibility to permit the con- 3) The need for water to maintain good hy- sideration of different aspects to the phenomena giene.

(Neuman, 2014). FINDINGS

Socio-demographic profile of community Research context health workers The research study was conducted in four mar- The total sample of community health workers ginalized peri-urban communities in the Dur- was 49 (n=49). All community health workers ban Metropolis where four non-profit organisa- were female. Most of the CHW were Chris- tions were engaged in home and community tians. Their ages ranged from 20-58 years old. based care for HIV/AIDs/TB patients. The data They all had worked in the community-based was collected over a period of four months organization for not less than 6 months and the (November 2014 - February 2015). longest serving participant had worked for 13

years. CHW did not receive remuneration for Study participants their work, however some did receive a stipend Prior to the data collection, ethical approval at the end of the month and this was also de- was granted by the Human and Social Sciences pendent on the availability of funds in the or- Research Ethics Committee of the University of ganization. KwaZulu-Natal, Durban, South Africa. Five in- depth interviews were conducted with project Accessibility/availability of water in the managers; one each from three organisations homes for community based care and two from one organisation. In one organi- Access to water in community-based care is sation the founder and an appointed project crucial. Water is necessary for infection control manager to whom CHWs reported to were in- as well as to maintain hygiene in households terviewed. All in-depth interviews were con- that have people living with HIV/AIDS ducted in English. Furthermore, five focus (PLWHA). In the focus group discussion it group discussions in IsiZulu language with 49 became clear that access to water was a chal- community health workers were conducted. lenge. Participants in focus group 1 indicated: Each focus group consisted of 5-12 partici- "...we’re given taps in our communities ...but pants. This study sought the perspectives of you find that there’ll be a time where there is CHWs because they have first-hand experience no water, you can’t get water maybe for a regarding the provision of care to patients and month or a few weeks and the person with their related situations with WASH. In addition HIV suffers”. Community health workers extensive field notes and careful observations need water in order for them to care for their were made during the field visits. patients. Unavailability of water hinders them from performing their duties. In the DATA ANALYSIS METHODS words of the CHW. All data collected in IsiZulu was translated and transcribed to English by a trained IsiZulu “ it happens that I need to bathe a patient but speaking research assistant. Data was analysed the water is often muddled and polluted , and following the six steps of thematic analysis I end up having to leave without bathing the described by Braun and Clarke (2006). Three patient” (Focus group 2). main themes emerged from the data: This was a clear indication from participants 1) Acessibility and availability of water in that they did not have water readily available to home and community-based care; them.

Journal of Science and Technology © KNUST April 2016 25 Mulopo and Akintola It is also the duty of the CHW to ensure that proper ventilation and access to toi- their patients take the medications while under lets” (Project manager 4). their care. However, unreliable water supply interferes with the routine of medication intake The relevance of water in relation to sanita- with some patients not being able to take their tion medications when they are supposed to because Water is necessary to keep the homes clean as they did not have access to water. well as to clean the toilets in order to reduce the “The patient might need to take pills, let’s transmission of opportunistic diseases. Patients say its 8 O’clock everyday, however some- suffering from AIDS experience loss of control times they are unable to take medication at in their bowel movement, as a result they defe- that time because there is no running water ecate and urinate on themselves. It became ap- and the only available water stored in the parent in the focus group discussions that there house is dirty ” (Focus group 1) . was a great need for water in households with PLWHA as the community health workers de- Patients end up not taking their TB or antiretro- scribed the conditions in the patients’ homes as viral medication when they are supposed to, a result of inadequate water. and this has serious consequences for them. “It's different for every household, sometimes This can result in the patient becoming drug you'd arrive and find a sense of cleanliness resistant and worsening the health of the pa- but in other houses it doesn't exist, and so tient. you find that houses are not cleaned and patients are not washed because there is no CHW therefore have to go and fetch water for water”(Focus group 4). the patients in order for them to perform their duties as well as meet the patients’ needs. How- The conditions in the homes can be so appall- ever, this creates a time burden for the care- ing with patients living in unhygienic condi- giver as they have a lot of patients to care for. tions and the patients relying on the CHW to maintain good hygienic conditions with little or A project manager from one of the organiza- no support from family members of the pa- tions said “ The challenge is that it takes a lot of tients. time for the CHW to go and fetch water and “Sometimes when you can get to an elderly this is a problem because they have a lot of patient’s home whom you only see once a patients to attend to. Fetching water sometimes week and you find that in their room there is prevents them from seeing other pa- a plastic bag filled with disposable nappies, tients” (Project Manager 5). hanging for days in the same room as the patient. This is so worrying because it is not Moreover going to fetch water takes away from a good thing at all to have such condi- the time spent with the patient and one of the tions” (Focus group 2). project managers feared that while the CHW is away to fetch water, patients left alone may CHW need water to clean the homes of the hurt themselves. She went on to say, patients. They need to clean up the vomit from “standing in the queue for so long and leav- the patients as well as the food left by the pa- ing the patient unattended for so long. A lot tients since most patients suffer from loss of of things can happen during the absence of appetite and they are sometimes too weak to the care-giver because some of the patients feed themselves. are so ill they can’t move or do anything. “Sometimes a patient is given a meal in the They could fall off the bed or anything could evening and he/she eats only a portion of it. actually happen. Sometimes caregivers resort The patient leaves the rest of the food on a to locking their patients in the rooms, without chair and by the next day the leftover food is

Journal of Science and Technology © KNUST April 2016 Community health workers (CHW) perceptions on WASH ... 26 infested with ants and cockroaches ” (Focus disease, CHW also need masks to protect them- group 3). selves from getting infected. However, home- based care organizations rely on donors and In order to save water, toilets are only flushed government to provide them with protective when a member of PLWHA household bathes equipment and sometimes it happens that the or when the caregiver fetches water to bathe the organization does not have all the necessary patient, the water from the bath is then used to equipment resulting in caregivers having to flush the toilet. If nobody bathes or if the care- care for patients with TB without masks at a giver was not able to bath the patients then the great risk to their health. toilet would not be flushed. “You find that the households with four “In our work with people infected with TB, rooms have flushing toilets. When they ex- we usually go to them even if we do not have perience water shortages the toilets are dirty, protective material. But they (Organisation) because there isn’t any water. In situations help us by going to check us up for TB regu- where you are assisting a patient, you experi- larly” (Focus group 4). ence challenges because there is no water. As a CHW I am forced to use water that I CHW need water to maintain hygiene as they bathed the patient with to flush the toilet and move from home to home and patient to patient if no one left his or her bathing water then for infection control purposes. there is no water to flush the toilet ” (Focus group 3). “We use gloves and little plastic aprons to protect ourselves, because as I have men- The need for water to maintain hygiene tioned earlier on we give bed bathes so we One way through which HIV is transmitted is use gloves to handle the patients because by direct contact with body fluids of an individ- some have bedsores and rashes. It is impor- ual infected with the virus. Community care- tant for us to wash our hands when we are givers come into contact with body excretions done so that we do not easily contract the of PLWHA in their day-to-day activities. sickness” (Focus group 1). “While wearing gloves you take the “powa” (a bucket like container used to defecate in) DISCUSSION containing the feces and empty it out into the The findings show that limited water supply in toilet” (Focus group 2). marginalized communities has adverse ramifi- cations for the wellbeing of individuals living Hence CHWs are susceptible to the risk of con- with HIV/AIDS/TB. Although the Municipality tracting the HIV Virus through their work. has made efforts to provide low-income com- There is therefore the need for protective equip- munities with communal taps (Manase et al , ment as well as water to maintain hygiene in 2009), these taps are not regularly checked or community-based care in order to ensure infec- maintained which makes them get damaged. tion control. Some taps have been vandalized by community “Sometimes you find that the patients you are members and have not been replaced. This has looking after have soiled themselves and you resulted in community health workers and would need to help get them clean. It's diffi- PLWHA having to walk long distances in order cult to leave people who have soiled them- to access water. Reduced access to water wors- selves without cleaning them just because ens the burden of caregivers; this finding is there is no water.” (Focus group 4). consistent with Ngwenya and Kgathi (2006) who concluded that reduced access to water Since most HIV/AIDS patients are co-infected brought about a time burden for caregivers. with tuberculosis (TB), which is an airborne

Journal of Science and Technology © KNUST April 2016 27 Mulopo and Akintola The study found that there was a great need for CM’s Master’s Research Dissertation super- water in households that have PLWHA. vised by OA. An earlier version of the paper Nwenya and Kgathi (2006) found that house- was presented by CM at the 2nd SNOWS Sci- holds with PLWHA use more water. House- ence Conference for Early Career Scientists holds that have patients living with HIV/AIDS working in Africa, Kumasi, Ghana (18-20 need water to clean the patient’s vomit, to bathe May). The authors are greatly indebted to the the patients, wash soiled clothing and linen and community health workers and programme keep the home environment clean. Since indi- managers who participated in the study. We viduals living with HIV/AIDS have weak im- will also like to thank participants at both meet- mune systems, keeping the home environment ings for their feedback and suggestions.CM and the toilets clean is necessary to reduce would like to thank the Wellcome Trust, UK transmission of opportunistic diseases, and for supporting her participation in the SNOW availability of water helps to maintain a high conference. level of cleanliness. REFERENCES The findings also revealed the need for protec- Akintola, O. and Hangulu, L. (2014). Infection tive equipment for community health workers. control in home-based care for people living Community health workers are continuously with HIV/AIDS/TB in South Africa: An ex- exposed to the body fluids of PLWHA in their ploratory study. Global Public Health , 9(4): daily activities and they sometimes work with- 382 -393. out protective equipment (Akintola and Han- gulu, 2014). The government needs to intervene Akintola, O. (2011). Home-based care and so- and ensure that there is a continuous supply of cial capital: Exploring the role of social capi- protective material to organizations offering tal in resource creation and access. Response- care to PLWHA. This will help households and Ability in the Era of AIDS: Building Social- community health workers to maintain hygiene Capital in Community Care and Support. in community based care. Bloemfontein, South Africa: AFRICAN SUN MEDIA , 227-243. CONCLUSION This study reveals the importance of WASH Akintola, O. (2006). Gendered home-based services in community-based care. The study care in South Africa: more trouble for the has highlighted the perspectives of CHW on troubled. African Journal of AIDS Re- WASH in community-based care. The govern- search,5(3): 237-247. ment needs to address the issues relating to water and sanitation in low-income communi- Blinkhoff, P., Bukanga, E., Syamalevwe, B. ties. One way of doing this would be for the and Williams, G. (2001). Under the Mu- department of health to collaborate with the pundu Tree: Volunteers in Home Care for department of water and sanitation to ensure People with HIV/AIDS and TB in Zambia that households with PLWHA in particular are Copperbelt. London, UK: Strategies for supplied with sufficient water. Hope Series No 14, ActionAid

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