Experiences of HIV / AIDS home-based caregivers in Vhembe district of the Limpopo Province

The purpose of this study was to explore and describe the experiences of HIV and AIDS home-based caregivers in the Vhembe district of Limpopo Province. A qualitative research design which was exploratory, descriptive and contextual was executed with a sample of purposively selected participants who provided home-based care to people living with HIV and AIDS in the Vhembe district of Limpopo Province. Data saturation occurred after in-depth interviews with fifteen participants. In-depth individual interviews and field notes were also used during data collection. The findings reveal that HIV/AIDS home-based caregivers express pain and despair when caring for HIV/AIDS patients. The theme was supported by the following categories and subcategories: problems related to stigma when caring for patients at their homes; stress, burnout, frustration and feelings of helplessness when caring for patients. Recommendations that are described focus on building a working relationship between the home-based caregivers, community and the family.


introduction and background
The growing HIV and AIDS pandemic continues to make a serious impact on all countries throughout the world.Glo bally, countries have responded to the HIV and AIDS pandemic by investing millions of dollars to help fight the dis ease, but the impact of HIV and AIDS is even greater in developing countries of Sub-Saharan Africa, including South Africa (Department o f Health, 2001: 2).
One of the goals of South Africa in its HIV and AIDS Strategic Plan for 2007-2011 is to provide adequate treatment, care and support services in communi ties through the development of appro priate home-based care implementation guidelines {Department o f Health, 2007: 22).In its National guidelines, the South African government has indicated that the HIV and AIDS epidemic is making it difficult for the hospitals to cope with the increasing number of patients be cause hospitals are overcrowded ow ing to a disproportionately inadequate number of medical, nursing and allied health professionals.It was resolved that, with the current situation persist ing, home-based care will provide a back-up for people who need extended care and it was clearly stated in the national guidelines that home-based care should not be taken as "cheap care or second class care" for those who cannot afford hospital care (Depart ment o f Health, 2001:3).
Lack of resources such as home-kits within home-based care programmes in South Africa is reported to be yet an other major problem.It is further re ported that the majority of HIV and AIDS home-based caregivers are us ing extremely limited resources and work under extreme pressure.Generally, HIV and AIDS home-based caregivers are not trained nurses; they are volun teering community members who are dedicated to helping other people in the com m unity (Sebanyoni-Mothlasedi, 2003:33).
In his speech about HIV and AIDS, the former President of South Africa, Mr Thabo Mbeki, stressed the importance of caring for people living with HIV and AIDS (Maister, 2001:36).HIVandAIDS home-based caregivers, therefore, have a very important role to play in amelio rating the condition of HIV and AIDS sufferers through caring.

Statement of the problem
Health-care services in South Africa are unable to cope with the increasing number of HIV and AIDS patients, and therefore patients are discharged ear lier from hospitals to be cared for in the familiar home environment.Some hos pitals in South Africa are reported to have eventually decreased the pa tients average stay from 14 days to just 3.5 days whilst referring patients to home-based care organizations (Leake, 2009: 1).In South Africa HIV and AIDS home-based care is almost always provided by community volun teers who are unemployed.They carry out basic care to people living with HIV and AIDS (PLWHA) who are sick at home.Some of the PLWHA cannot help themselves in performing tasks such as bathing, going to the toilet, feeding and cooking because they are suffer ing from debilitating HIV and AIDS-related diseases.Home-based caregivers often carry out household chores, in addition to the basic care that they pro vide (Leake, 2009:2;Sebanyoni-Mothlasedi, 2003:33).
A comparative study of South Africa and Uganda showed that home-based care (HBC) programmes in South Af rica are inadequately developed as compared to those in Uganda.It was found that many HBC programmes in South Africa still reflect a response of crisis management and were found to be unsustainable because they rely on volunteers from the affected communi ties to carry out the caregiving activi ties in patients at their homes (Akintola, 2004:3).Given the background that home-based care (HBC) is becoming a dominant programme in HIV and AIDS treatment and support in South Africa, the need to understand the experiences of HIV and AIDS hom e-based caregivers in providing care to patients at their homes is indispensable in or der to work on its sustainability.o f Health, 2001: 1).In this study it re fers to the method of using trained vol unteers to provide health care to indi viduals at their homes with the purpose of assisting the patients to meet their needs in order to promote good health.

Research design and method
A qualitative, explorative, descriptive and contextual research design used to explore and describe the experiences o f HIV and AIDS hom e-based caregivers for this study (Creswell, 2009:175).
The population of this study comprises of all HIV and AIDS home-based caregivers in the Vhembe district of the Limpopo province.A non-probability, purposive sampling method was used because it enabled the researcher to consciously select voluntary HIV and AIDS home-based caregivers who had been trained in home-based care, had worked for a year as a home-based caregiver and were still working with home-based patients in the community.
HIV and AIDS home-based caregivers were the most appropriate participants to share their experiences regarding caring for HIV and AIDS patients (Bums & Grove, 2007:241;Creswell, 2009:175).
Fifteen home-based caregivers were selected from different Home-based care (HBC) organisations w ithin Vhembe district of Limpopo Province.Fourteen of the participants were fe males and only one was a male.Their ages ranged between 27 and 52 years.
They had been working as volunteers in home-based care for more than one year and most of them had no other employment except one who was also a hairdresser.Ten participants were sin gle parents living with their children and some were staying with their par ents.The remaining five participants were married.In-depth individual interviews were used to get more information on the experiences of HIV and AIDS homebased caregivers (De Vos, Strydom, Fouche & Delport, 2007: 298;Morse, Swanson & Kuzel, 2001:83).During the interviews, HIV and AIDS home-based caregivers were able to express their experiences freely without restrictions.
The researcher and the participants were involved in interviews in which they were co-participants (Henning, van Rensburg & Smit, 2004:74).The interviews took about 45 to 60 minutes each.The broad question that was asked enabled the researcher to gain a better understanding of the experi ences of HIV and AIDS home-based caregivers.Probing questions were asked to allow for deeper and more thoughtful responses from the partici pants (Rubin & Rubin, 2005:159).
Field notes were used to record the non-verbal cues that were observed during the interview.This was done in the presence of participants after the purpose was explained to them (Neuman, 2000:364).An audiotape re corder was used to record the inter views and the data was later tran scribed verbatim for analysis purposes (Henning, Van Rensburg & Smit, 2004: 75).Data sets were analysed using Tesch's eight steps of open coding in which raw data was organised into one theme, categories and subcategories (Cresswell, 2009:186).

Measures to ensure trustworthiness
To ensure that the findings of this study are a true reflection of human experience, the model of Lincoln and Guba (De Vos, Strydom, Fouche & Delport, 2007:345) was used.Four cri teria for establishing trustworthiness were used, namely: truth value (cred ibility), applicability (transferability), consistency (dependability), and neu trality (conformability).The strategy of credibility was used to ensure that the findings of the study reflect the experi ences of HIV and AIDS home-based caregivers.The following methods were used to confirm credibility: • Prolonged engagement: The re searcher was engaged in a pro longed interaction with the HIV and AIDS home-based caregivers during data collec tion.

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Member checking: Follow-up interviews were conducted with some participants for validation of data that was already gath ered.
were held with the supervisor who is experienced in research methods.Study findings were presented ibefore a team of senior researchers.The strategy of transferability was used to ensure applicability.Transfer ability was enhanced by giving a dense description of the experiences of HIV and AIDS home-based caregivers.The strategy of dependability was used to ensure consistency which was enhanced by coding and re-coding of data by an independent coder who has a doctoral qualification, with experience in qualitative research methods.The strategy of conformability was used to ensure neutrality.Transcrip tions, audiotapes and field notes were made available to supervisors to con firm the findings.

Ethical measures
In order to do what was right and good without violating the rights of the par ticipants, the following ethical meas ures were considered: ethical clearance was obtained from the University's Eth ics Committee and the Limpopo Pro vincial Ethical Research Committee.The following ethical measures were con sidered throughout the process of the research to protect the rights of par ticipants (Creswell, 2009:89, LoBiondo-Wood & Haber, 2002:273): permission Peer review: Several meetings to conduct research was sought from HBC organisations and participants.The researcher developed an informed consent for participants to sign before engaging in the research to ensure that participants1 rights were protected throughout the process of the study.Participants were informed that partici pation in this study was voluntary and they should feel free to withdraw from participation at any time if they felt like doing so.Codes instead of names were used to ensure anonymity of partici pants and raw data was not exposed to anyone except to the supervisors of the study.Participants were assured that the information they provided would not be used against them.

Discussion of the findings
The table that follows gives a summary of the findings of this research according to themes, categories and subcategories.During the data collection process with HIV and AIDS home-based caregivers, participants expressed that they expe rienced pain and despair while provid ing home-based care to patients suf fering from HIV and AIDS.These are discussed under the following catego ries: problems related to stigma; stress and burnout; frustration and feelings of helplessness.The discussion that follows gives a description of each cat egory, its subcategory, direct quota tions and literature control.

Problems related to stigma
HIV and AIDS home-based caregivers indicated that they experienced many problems that were related to stigma when providing care to HIV and AIDS patients at their homes.Discussions with HIV and AIDS homebased caregivers revealed that when they visited patients at their homes for the first time, they were not freely wel comed by patients, but as time went on, with subsequent visits, patients began to accept and welcome them.
Reluctance to be welcomed by patients was also expressed in terms of fear of being seen with an HBC by friends and neighbours.
Participants expressed statements such as: "...Other patients after disclosing their status to us, they want us to visit them, but you will find that they are afraid o f their neighbours.They be lieve that our visit will make the neigh bours aware oftheir HIV and AIDS sta tus.You will find that this person is not completely free, but.Participants reported that late disclo sure of their status by patients affected the process of caring that they should provide.This is how a participant ex pressed it: "These people due to fear o f disclosing their status, they end up not taking treatment for a long period after disclosing their status, it might be due to the fact that they start dis closing their status when they are un able to do anything, or when they are bedridden." Participants indicated that they be lieved that the reason for late disclo sure was fear of the stigma that is at tached to HIV and AIDS disease.Un fortunately it delays the process of re ceiving care and support and therefore their condition becomes worse before they could be assisted.
According to Lindsey, Hirschfeld, Tlou and Ncube (2003:498), it has been found that stigma often prevents peo ple from accessing available health care services because they are afraid that people will know about their HIV -posi tive status, and therefore continuous care and support from HIV and AIDS home-based caregivers is delayed.This finding is also supported by Baker, et al. (2005:1).It is explained that stigma and discrimination discourage people infected with HIV and AIDS from seek ing the services they need because it may lead to the revelation of their HIV status to their families, colleagues and community.In this study, participants revealed that in some families they were at least ac cepted by relatives when the patients' condition started to deteriorate.One participant said: "Some families start by not accepting us, but as the condi tion worsens and when they see that there is nothing that they can do, then they accept us so that we can help them in caring fo r their relative.They think that we will assist them and relieve them o f their burden." It would appear there was an element of opportunism on the part of some family members.
Mostly it was only that they required an extra, willing pair of hands more than anything.

• Lack of knowledge by family members regarding care of their loved ones
Findings from this study revealed that lack of knowledge by family members hampered caring for their loved ones as it exacerbated stigma and discrimi natory practices.Adebayo, Irinoye, Oladoyini and Fakande (2004:52) iden tify lack of knowledge about HIV and AIDS as the main reason for family members' not taking care of their loved ones.In this study participants indi cated that family members were afraid of taking care of the patient because of lack of knowledge about HIV and AIDS.One participant said: "They do not know how this disease is transmitted, the truth is that people lack knowl edge, yes they lack knowledge." The findings from this study revealed lack of knowledge about the mode of spread of HIV by relatives and family members as a contributing factor to re jection and isolation, and therefore they were afraid that they might con tract the disease during caring.Accord ing to Smith (2003:29), the advantages of home health care include strength ening the family unit and restoring fam ily control.Clients recover more quickly at home than in hospitals; home care allows for easier access to loved ones and their support; home care is a less threatening and more familiar and com fortable environment which enhances care and the quality of life.
It is clear that there are many benefits to patients if they are cared for at home, but according to this study it was not always the case, as some patients were not getting help from their loved ones.(Bennet, Ross & Sunderland, 1996:145).
During the discussions with the HIV and AIDS home-based caregivers, the following factors were identified as the causes of stress and burnout:

• Suffering and death of patients
In this study participants expressed the stress that they feel when they witness patients dying of HIV and AIDS-related diseases.From the discussions with the HIV and AIDS home-based caregivers it was clear that during the process of providing care to patients, they became emotionally attached to patients in such a way that they would do every thing in order to satisfy the needs of the patients without considering their own.This is further supported by Phaladze (nd: 8), who also indicates that HIV and AIDS caregivers carry an immeasurable burden because when their patients suffer, they also suffer, and this suffer ing is characterised by feelings of help lessness and despair.
A participant expressed the emotional distress of witnessing patients in their care dying: "Emotionally we feel pain because you find that as we are pro viding care to patients we become close and form a good relationship with the family.In the family if there is a problem with the patient, the first person that they think o f is "m e" the caregiver.We are the first people to be called by family members ifthe patient dies, they will say: "Your patient is dead.It means thatfor the arrange ment o f the hearse and other immedi ate needs, the family will be looking up to me because o f frustration.There fore I must act bravely because if I panic then we will all be uncontrolla ble and will not be able to make im mediate arrangements effectively." The findings in this study reveal that HIV and AIDS home-based caregivers expressed the emotional distress of having to arrange for the removal of the body after the death of a patient at home.They felt that if the relatives of the dying patient called them, it was their responsibility to show support to the family because they were taking care of the client before death.
Participants expressed that losing a patient through death was very pain ful because they felt that they had done their best, devoting their time and en ergy when caring for the patient.There fore death was perceived as a loss to the HIV and AIDS hom e-based caregiver.

AIDS
One of the potential risks associated with caring for HIV and AIDS clients is the increased probability of contract ing the disease through exposure.In care-giving there is commitment of time and effort that may be made at a high price to the self because for care giv ing to be complete, the caregiver be lieves that it has to be recognised by the cared-for person, which is very hard to establish at times (Phaladze, nd: 1).
In this study some participants ex pressed their fear of contracting the infection while providing care to HIV and AIDS patients at their homes.Some participants explained that they use gloves when bathing or changing patients* position but they did not tell their patients that the reason for wear ing gloves was to protect them as caregivers from getting infection from the patient.Participants further indi cated that some patients did not feel good if the caregiver was wearing gloves.This is how the participants explained it: "Somepatients do notfeel free when we use gloves while caring for them, but we explain that we are protecting them from getting infection from us." In this study some participants indi cated that the gloves were too thin, to such an extent that they tore when they were bathing a patient and if a patient had sores, or if the gloves were not in tact, one could get infected.The risk of getting infected is reported to be high during the terminal stages of HIV and AIDS when the patient is bedridden.The body fluids are infected and the voluntary hom e-based caregiver will be dealing with these dis charges (Uys & Cameron, 2003:129).This is the time when the patient needs total basic care including bathing, changing of linen, wound dressing, feeding etc., therefore there is too much contact with body fluids and the risk of transmission of infection is high.

* Frustration and feelings of helplessness
In this study participants expressed feelings of frustration which they ex perienced every day when they as sisted patients at their homes because of lack of basic resources and having to walk long distances to get to their patients.Participants cited poverty as a major problem that they were experi encing during the provision of homebased care.In other studies it has also been discovered that hom e-based caregivers in developing countries are faced with poverty in all its ugliness.HIV and AIDS home-based caregivers find it frustrating getting into house holds to assist with care and finding families including the patient hungry and cold, without hope of relief (Uys & Cameron, 2003:162).The following two subcategories will be discussed in de tail:

Lack of basic resources
During interviews with HIV and AIDS home-based caregivers, lack of basic resources was cited as a very big prob lem.Participants in this study explained that when they visited patients in their homes they felt helpless and frustrated because they found patients living in extreme poverty where there was no food or even water to drink.They indi cated that it became a burden which they felt that they had to carry because if there was no food, they had to make sure that the patient got something to eat before treatment was taken, as they could not give treatment on an empty stomach.In this study participants ex plained that they were forced by the conditions under which their patients were living to fetch water and also to buy bread for their patients.Participants verbalized the emotional distress that they felt when the patient requested soft porridge from them and they promised to bring it the following day.If they did not get it, they felt em barrassed to face the patient the fol lowing day because they knew that their relationship of trust with the pa tient could be affected.In a study on action learning and reflection with HIV and AIDS home-based care workers in Gauteng by Pistorius (2002:6), partici pants reported the guilty feelings that they experienced after a patient asked to be given money to buy fruit.
Throughout the discussions with the participants, they could not hide the pain that they felt when visiting a pa tient who was hungry.HIV and AIDS home-based caregivers found them selves in a dilemma because they knew that treatment must not be taken on an empty stomach, and here they were bringing treatment to a hungry patient.
Participants in this study explained that they were emotionally affected when they were to provide treatment and found that the patient was hungry.Participants explained that they walked long distances, up to 10 km, when vis iting HIV and AIDS patients in their homes and they got tired before they could help the patient.It became worse if they found that there was no water to bath the patient and they had to go up to 3km to fetch water with a 20 or 25 liter container.

Recommendations to support HIV and AIDS home-based caregivers
The following are recommendations that were described, based on the find ings of the study to support HIV

Limitations of the study
The study was exclusively conducted in one district of Limpopo Province.Therefore, a generalisation of findings is not possible.However, there is both a possibility and a need for the research to be replicated in other districts.

Conclusion
In this study the experiences of HIV and AIDS home-based caregivers were explored, measured and qualified.HIV and AIDS home-based caregivers ex pressed the pain and despair that they experienced while providing homebased care to patients.The research ers discovered that the findings of this study highlighted needs of the HIV and AIDS home-based caregivers that were often not attended to because they were overwhelmingly masked and su perseded by the care that should be provided to HIV and AIDS patients at their homes.It was discovered that caregivers also had a whole range of support needs that should be met.

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Reluctance on the part of patients to welcome HIV and AIDS home-based caregivers.

disclosure of their HIV and AIDS status by patients
• Late