The experiences of informal care givers in home-based care in the ODI sub-district area in the North West Provice

Curationis 31(4): 24-30 The purpose of this study was to explore and describe the experiences of informal caregivers in home-based care in the Odi Sub-District area in the Province of the North West. A qualitative, exploratory and descriptive study was followed to collect data from the selected population. The study population consisted of informal caregivers who conduct home visitations in the Odi Sub-District area. Participants were purposively selected. Data were collected from the participants by means of focus group interviews, which were guided by the group moderator. The experiences of informal caregivers were shared through the participants’ responses to a central research question. Tesch’s qualitative method of data analysis was used to analyse the data. The experiences of informal caregivers were related to emotions, social circumstances and support. The participants placed emphasis on emotions of love and caring, fulfilment, frustration, exploitation, anger and helplessness, fear, rejection, shame and denial. Social circumstances regarding finance, antagonism and stigma were also emphasised. The participants raised the issue of the necessity of the support of the family, community and clinic during home-based care. It was recommended that this support group should assist families in dealing with fear, stigma and discrimination. Furthermore, it was recommended that the government should provide the services for developing and empowering informal caregivers in home-based care. Key terms: Home-based care; HIV and AIDS; inform al caregivers; focus group interview Correspondence address; Dr MD Peu Department of Nursing Science P.O.BOX 667 School of Health Care Sciences University of Pretoria Pretoria 0001 T e l: (012)354-2133 Fax:(012)354-1490 E-mail: doriccah.peu@up.ac.za Introduction H om e-based care is one o f the strategies that should be implemented to provide care to the community during home visit. It was introduced in the 1980s and 1990s, as additional health service provision to clients. Homebased care activ ities are m ostly conducted by non-governm ental organisations (NGOs) to care for the sick. These organisations are involved in the training of community health workers in assisting families with homecare (Uys, 2002:99). During hom e-based v isits, opportunities are provided to identify both the barriers and support systems of the families (Stanhope & Lancaster, 2002:276). According to the South African National Department of Health (South A frica, 2001b:5) the implementation of home-based care as the primary healthcare strategy reduces the pressure on hospitals and other resources on a variety of levels of services. W ith hom e-based care, patients spend their days in their familiar surroundings, reducing their 24 Curationis December 2008 isolation. Considering the above, there is a need to investigate or explore the experiences o f informal caregivers in home-based care. Informal caregivers are therefore trained because they serve as potential partners in the delivery o f health services. In return, they gain knowledge of caring and providing a broad range of services, and can achieve a variety of health-related goals w ith pa tien ts (S tanhope & Lancaster, 2002:5-18). Furthermore, the National Department of Health (South Africa, 2001b:9) indicated that homebased care empowers families and other patient caregivers to take care of their health. This could be done through effective education and training, to reduce unnecessary visits and admissions to hospitals. This was also confirm ed by the development o f a curriculum, the modules of which were based on the multiple roles of homebased caregivers (South Africa, 2002:16). Home-based caregivers were given the chance to suggest different topics on which objectives could be based, in order to promote health and recovery and assist them in the attainment of certain skills. This study investigated the experiences of informal caregivers during home visits in the Odi Sub-District region in the North West Province, in order to promote the health of the community. The background to the study According to the National Department o f H ealth (South A frica, 2005:5), approximately 4.2 million South Africans are living with HIV and AIDS. It is estimated that the pandemic will infect a further six million South Africans by 2005. It was therefore necessary to educate patients, their families and home-based caregivers. In order to promote and ensure q u ality healthcare, safety, com m itm ent, cooperation and collaboration should be ensured. Homebased caregivers detected and treated problems, and also assisted skilled and qualified caregivers to render quality care. Mutual trust and rapport amongst patients and fam ily members were established (South Africa, 2004a:5). According to Zimba and Mclnerney (2001:84), the escalating increases in the number o f HIV and AIDS victims in Malawi dictated a need for skilled informal caregivers to provide relevant care to the community. They added that new trends in managing HIV and AIDS patients focus on im proved ou tpatien t treatm ent procedures. There is a growing emphasis on community home-based care services, which are less expensive. Home-based care reduces transport problems, time spent in hospitals, waiting in long lines for treatment and other costs (Department of Health, 2001b:2-3). This was observed when the healthcare providers visited the patients in their homes. Home visits are also conducted to help people to face ill health or death in their familiar surroundings, rather than in a hospital ward (Lundy and Janes, 2001:884-885). The visits conducted permitted better follow-up and provided educational opportunities regarding HIV and AIDS prevention. It was also noticed that regular home visits promoted efficient and effective supervision of families in their homes. Informal caregivers are exposed to the opportun ities w here they observe families who experienced the symptoms of the social problem such as poverty. Basic needs, such as hunger and thirst, often remain unmet. In an attempt to remedy this, the Government gives poor families, both in rural and urban areas, relief in the form of food parcels and other incentives. Van Dyk (2001:95) mentioned that informal caregivers should take responsibility for supporting families in need of care, irrespective of their health, religion, culture, norms or values. The identification and implementation of successful prevention strategies for patients, who present with chronic illnesses, will assist policy makers in making progress in the community. In the North West Province it was observed that supplem ents are provided to the chronically ill, on a monthly basis to cater for the community. These activities are recorded and are kept to control costs, to re-order (depending on client number) and for statistical purposes. Richter and Peu (2004:31) noted that the number of elderly people and HIV and AIDS victims was increasing and that there was a high rate of malnutrition, HIV and AIDS and TB. This has left families and home-based caregivers to face many challenges. Therefore, the government had to persuade the National Department of Health to expand centres for training home-based caregivers (South Africa, 2005:6). The Odi Sub-District was one of the areas in the North West Province that caters for informal caregivers, providing them with information on how to care for various patients. As a result of a shortage of skilled formal healthcare personnel, healthcare has becom e a scarce commodity. In order to alleviate suffering in communities, informal caregivers should be deployed at grassroots level. Therefore there is a need to investigate the impact and the experiences of informal caregivers during home visits as they are faced with variety of challenges.


Introduction
H om e-based care is one o f the strategies that should be implemented to provide care to the community during home visit.It was introduced in the 1980s and 1990s, as additional health service provision to clients.Homebased care activ ities are m ostly co n d u cted by non-governm ental organisations (NGOs) to care for the sick.These organisations are involved in the training of community health workers in assisting families with homecare (Uys, 2002:99).

D uring
h om e-based v isits, opportunities are provided to identify both the barriers and support systems o f the families (Stanhope & Lancaster, 2002:276).According to the South African National Department of Health (S outh A frica, 2001b:5) the implementation of home-based care as the primary healthcare strategy reduces the pressure on hospitals and other resources on a variety o f levels o f services.W ith hom e-based care, patients spend their days in their familiar surroundings, reducing their isolation.Considering the above, there is a need to investigate or explore the experiences o f informal caregivers in home-based care.
Informal caregivers are therefore trained because they serve as potential partners in the delivery o f health services.In return, they gain knowledge of caring and providing a broad range of services, and can achieve a variety o f health-related g o als w ith p a tie n ts (S tanhope & Lancaster, 2002:5-18).Furthermore, the National Department o f Health (South Africa, 2001b:9) indicated that homebased care empowers families and other patient caregivers to take care of their health.This could be done through effective education and training, to red u ce u n n ec essary visits and admissions to hospitals.This was also confirm ed by the developm ent o f a curriculum, the modules of which were based on the multiple roles o f homebased caregivers (South Africa, 2002:16).Home-based caregivers were given the chance to suggest different topics on which objectives could be based, in order to promote health and recovery and assist them in the attainment of certain skills.
This study investigated the experiences of informal caregivers during home visits in the Odi Sub-District region in the North West Province, in order to promote the health o f the community.

The background to the study
According to the National Department o f H ealth (S o u th A frica, 2005:5), approximately 4.2 million South Africans are living w ith HIV and AIDS.It is estimated that the pandemic will infect a further six million South Africans by 2005.It was therefore necessary to educate patients, their families and home-based caregivers.In order to promote and en su re q u a lity h ealth care, safety, co m m itm en t, cooperation and collaboration should be ensured.Homebased caregivers detected and treated problems, and also assisted skilled and qualified caregivers to render quality care.Mutual trust and rapport amongst patients and fam ily m em bers w ere established (South Africa, 2004a:5).
According to Zim ba and M clnerney (2001:84), the escalating increases in the number o f HIV and AIDS victims in Malawi dictated a need for skilled informal caregivers to provide relevant care to the community.They added that new trends in managing HIV and AIDS patients focus on im proved o u tp a tie n t treatm en t procedures.There is a growing emphasis on community home-based care services, which are less expensive.
Hom e-based care reduces transport problems, time spent in hospitals, waiting in long lines for treatment and other costs (Department of Health, 2001b:2-3).This was observed w hen the healthcare providers visited the patients in their homes.Home visits are also conducted to help people to face ill health or death in their familiar surroundings, rather than in a hospital ward (Lundy and Janes, 2001:884-885).The visits conducted permitted better follow-up and provided educational opportunities regarding HIV and AIDS prevention.It was also noticed that regular home visits promoted efficient and effective supervision o f families in their homes.
Informal caregivers are exposed to the o p p o rtu n itie s w here they observe families who experienced the symptoms of the social problem such as poverty.Basic needs, such as hunger and thirst, often remain unmet.In an attempt to remedy this, the Government gives poor families, both in rural and urban areas, relief in the form o f food parcels and other incentives.Van Dyk (2001:95) mentioned that informal caregivers should take responsibility for supporting families in need of care, irrespective o f their health, religion, culture, norms or values.The identification and im plementation o f successful prevention strategies for p atients, w ho present w ith chronic illnesses, will assist policy makers in making progress in the community.In the North West Province it was observed that su p p lem en ts are pro v id ed to the chronically ill, on a monthly basis to cater for the community.These activities are recorded and are kept to control costs, to re-order (depending on client number) and for statistical purposes.Richter and Peu (2004:31) noted that the number o f elderly people and HIV and AIDS victims was increasing and that there was a high rate of malnutrition, HIV and AIDS and TB.This has left families and home-based caregivers to face many challenges.Therefore, the government had to persuade the National Department of Health to expand centres for training home-based caregivers (South Africa, 2005:6).
The Odi Sub-District was one of the areas in the North West Province that caters for informal caregivers, providing them with information on how to care for various patients.As a result of a shortage o f skilled formal healthcare personnel, h ea lth c are has becom e a scarce commodity.In order to alleviate suffering in com m unities, inform al caregivers should be deployed at grassroots level.Therefore there is a need to investigate the impact and the experiences of informal caregivers during home visits as they are faced with variety o f challenges.

Problem statement
The National Department of Health noted th at South A frica has in su fficie n t healthcare resources (South Africa, 2004a: 6).Many people who became ill with HIV and AIDS-related diseases and other chronic conditions were not able to stay in h o sp itals as a re su lt o f shortages of equipment, beds and staff, and an increase in the care demanded by patients.
It has been emphasised that caregivers experienced em otional and physical problems, such as rejection, anger and grievance, physical strain and stress, when providing care to patients confined to their beds (South Africa, 2001 b: 10).
The following research question guided the researcher to achieve the results "What are the experiences o f informal caregivers in home-based care in the Odi Sub-District in the North West Province

Significance of the study
The study will assist in the improvement o f home-based care services and the relations between informal caregivers and patients during home visits.If services im prove, this will reduce h o spitals' workload o f caring for term inally ill patients.The study will also encourage informal caregivers to provide the best possible care to the community.

Research question
What are the experiences o f informal caregivers in home-based care in the Odi Sub-District in the North West Province?

Purpose of the study
The purpose of this study is to explore and describe the experiences of informal caregivers in home-based care, in the Odi Sub-District in the North West Province.

Ethical considerations
The researcher obtained permission to conduct investigation from the North West Province and the institution at which the research was conducted.The Ethical Committee of the University of Pretoria (UP) Faculty of Flealth Sciences approved the research proposal and participants must signed written consent forms.The researcher provided adequate information, regarding the research, to the participants.They were free to choose or decline participation (Polit & Hungler, 2001:78).Principles o f ethics were adhered to.

Research design and method
A qualitative, exploratory and descriptive design was used.The experiences of informal caregivers were explored and described.

Population and sampling
The population in this study consisted o f inform al caregivers who visited patients in their homes in the Odi Sub-District.The inclusion criteria for this population were informal caregivers conducting home visits, residing in the Odi Sub-District area and consenting to participate in this study.The participants also had to understand the culture o f the community.
Purposive sampling was utilised in this study.The researcher personally and p u rp o siv ely selected the study population for this study.Bless and Smith (2004:92) noted that a sample is chosen on the basis o f what the researcher considers to be a typical unit.

Data collection and instrument
A focus group interview was conducted to collect data from the participants.In this study, two focus groups were utilised.Each focus group consisted of five participants who were divided into two groups of five each.The groups consisted of both males and females who are informal caregivers conducting home visits in the Odi Sub-District area.The focus group interviews were conducted in three phases.Phase one involved the preparatory stage, phase two involved the initial focus group interview and phase three involved the post-interview events.

Data analysis
In the data analysis, the researcher and co -co d er analysed the data independently.The data w ere qualitatively analysed.Bums and Grove (2003:379) define data analysis as a technique used to reduce, organise and give meaning to the data.In this study, the Tesch method of data analysis was used (Tesch, 1992:141).
Audiotapes were listened and re-listened to.Some ideas were noted down as they came to mind.Verbatim transcripts were read and re-read to understand the data properly and to get a sense o f the whole.The underlying meaning of the data was sought.Thoughts were written in the margin.A list o f topics was made and similar topics were clustered together.T hereafter colum ns w ere draw n to identify major topics, unique topics and those that fitted into neither o f these categories.The list was used to compare the data.Similar data were identified and categorised as the list was reduced.The topics relatin g to each other were grouped together and given a title or description.Each category, subcategory and them e was checked.All data belonging to each category, subcategory and theme were assembled in one place and a preliminary analysis was performed.The co-coder and researcher conducted consensus m eetings after the data analysis (Coffey & Atkinson, 1996:46;Creswell, 1994:154;Tesch, 1992:141).

Discussion of findings and literature control
During the data analysis, three main categories, nam ely em otions, social circumstances and support, emerged.Four subcategories emerged from the category em otions, namely informal careg iv ers, relativ es o f p atien ts, com m unity and patients.T hree subcategories emerged from the category social circumstances, namely finance, antagonism by family and stigma.The subcategories family, community and clinic emerged from the category support.

Emotions
The first category that emerged was emotions.The category emotions was further divided into the subcategories informal caregivers, relatives of patients, community and patients.

• Informal caregivers
The Participants also expressed feelings of being exploited during home visits.They felt exploited because the entire burden of care was placed on the shoulders of the informal caregivers.Suspected HIV and AIDS sufferers were harassed, blamed and punished by community members (Herek & Capitanio, 2002:371).Herek and Capitanio (2002:371) noted that inform al caregivers w itnessed instances o f exploitation when HIV patien ts w ere turned aw ay from healthcare services employment.These patients were often evicted from their homes by their families and rejected by their friends and colleagues (Herek & C apitanio, 1993:577).C om m unity members also often felt uncomfortable with their children attending school with HIV and AIDS sufferers.

Relatives of patients
The following themes emerged from the subcategory relatives of patients, namely

Peer examination
The services of an independent co-coder were enlisted.The research process was discussed with experts.

Persistent observation
The researcher identified characteristics and elements relevant to the problem and monitored the participants' non-verbal cues.

Triangulation
Multiple methods of data collection were used to increase the reliability of the observations.
Prolonged engagement T rust and rap p o rt w ere established and an in-depth understanding of the culture and language gained by the interviewer.A period of three weeks was spent with the participants in order to do this.

Transferability Authority of participants
The participants were inform al caregivers, who render continuous home visits in the Odi Sub-District area.They were selected due to their acquired skills and knowledge in conducting home visits.The research steps were checked for transferability to other situations by the supervisor.

Peer debriefing
This assisted the researcher in knowing what steps to take after the interview.The services of the co-coder were enlisted and the research process was discussed with experts

Data collection
The findings were well defined, starting with research methods, data gathering, analysis and interpretation.Co-coding and recoding were done and the results compared.

Confirmability Researcher
The researcher remained neutral throughout the study and carefully guarded against imposing her ideas in order to ensure accuracy, relevance and meaning.
It was realised that family members seemed to be afraid o f the HIV and AIDS patient.The majority o f participants caring for patients in the Odi Sub-District expressed anger over fam ilies who rejected their ill family members.Herek and Capitanio (2002:373) argued that HIV in fected p eo p le w ere rejected and isolated because of fear of the spread of HIV and AIDS through casual contact.
In fearing rejection, they kept their status secret from others, which ultimately prevents them from receiving societal support. A

• Community
The theme stigmatisation caused by HIV and AIDS disease emerged from the subcategory community.AIDS-related stigm a refers to the prejudice, discounting and discrimination directed at people perceived to have HIV and AIDS (Unaids, 2000:27).
D enial goes hand in hand w ith discrim ination.M any people w ill continue to deny that HIV exists in their communities.Unaids (2000:1) stated that stigma results in rejection, denial and discrediting and consequently leads to discrimination and the violation of human rights, especially those o f women and children.
O lenja (1999:189) noted that even sexually transmitted and other related diseases are stigmatised by community members.Stigma also surrounds people with illnesses thought to be infectious, such as leprosy.The majority of patients are denied the privileges o f the sick.Olenja (1999:189) also argues that the stigma associated with HIV and AIDS originates in the belief that people with HIV and AIDS are promiscuous, which the community feel relieves them o f the obligation to sympathise.People with HIV and AIDS are hated, seen as outcasts and no one wants to be near them.
The stigma that surrounds HIV and AIDS is a problem that is still present in society today.As a result, HIV and AIDS patients may be reluctant to share information pertinent to the assessment, planning, implementation and evaluation o f their care (O lenja, 1999:189).F ear o f discrimination and stigmatisation may prevent people from seeking treatment for HIV and AIDS, as they face the possibility o f being turned away from health care fa cilities, being denied housing and em ploym ent, being divorced by their spouses and suffering physical violence and even murder.
Stigma affects an individual's experience o f illness and the care they ought to receiv e, and gen erates the fear o f rejection that prevents individuals from disclosing their status (Olenja, 1999:189).

Patients
The subcategory patients emerged from the category emotions.The subcategory patient was further divided into themes o f shame and denial associated with HIV and AIDS disease.These them es o f shame and denial seemed to be closely related to the prev ious them e o f stigmatisation by the community.
Louw; Edward & Orr (2001:5) emphasised that, in many societies, people living with HIV and AIDS are seen as shameful and th eir disease is associated w ith behav io u rs of, for exam ple, homosexuality.HIV and AIDS was seen as the result o f irresp o n sib ility .According to Pierret (2000Pierret ( :1593)), HIV positive women in Australia felt ashamed and guilty when they found out their status.They felt they are dirty and a p o llu te d source o f infection.This prevented them from revealing their HIV and AIDS status to their partners and families, as they fear rejection.This occurred mostly in people who were symptomatic.Rassool (2003:235) added that the shame asso c ia te d w ith HIV and AIDS discourages individuals from seeking voluntary counselling, testing and treatment, and slows prevention efforts.Stigma directly affected the Government's capacity to respond effectively to the d ev astatio n o f the HIV and AIDS epidemic.Fears and taboos surrounding HIV and AIDS translated into silence and inaction, despite the consequences for individuals and societies (R assool, 2003:387).Opportunities for prevention are missed, care and treatment remained inaccessible and the death toll arose.

Social circumstances
The second category that emerged was social circumstances.The subcategories finance, antagonism by family, and stigma em erged from the category social circumstances.

• Finance
The them es poverty w ithin the community, lack of transport to access health services and lack of facilities to support their daily activities emerged from the subcategory finance.Some participants expressed how poverty impacts patients, families, and the care re n d ered by inform al caregivers, including relatives.Financial problems, such as the loss of income and other financial supports, lead to a lack of food and clothing, and the inability to pay the high cost o f m edical fees (U naids, 2000:12).Illness and the inability to pay school fees lead to diminished livelihood opportunities.HIV positive women often feel ashamed o f taking care o f their children in these circumstances.
Campbell and Foulis (2004:9) stated that poverty refers to the lack of basic needs for survival, such as food and water.Campbell and Foulis (2004:9) further noted that an estimated 22 million people in South Africa could be in danger of starvation.In fact, in this state o f abject poverty, even if anti-retroviral drugs were issued for free, many people living with HIV and AIDS would die o f hunger irre sp ectiv e o f the av ailab ility o f treatm ent.A ccording to P ierret (2000:1598), the poverty experienced by immigrants, women, and families with HTV positive children places a high care demand on government.

• Antagonism by family
Two them es em erged from the subcategory antagonism by family, namely poor cooperation and family belief system.The participants reported resistance and an antagonistic attitude by the families toward them as caregivers.
Fam ilies o f HIV and AIDS patients indicate their antagonism by refusing to cooperate with informal caregivers, by refusing to continue with care in the absence o f the caregiver and by keeping secret the patient's HIV positive status.
Instead o f being caring, loving and patient, participants observed that family members sometimes talk loudly to and are physically aggressive w ith the patient.Caregivers felt overwhelmed and frustrated, especially when they had to take time off and leave their patients unattended for a few days (Farran et al., 2004:47).Caregivers sometimes provide care to patients without knowing their HIV status.They are only informed after a long period o f exposure to the sick, which can be regarded as a violation of human rights (Ndaba-Mbatha & Seloilwe, 2000:222).

Stigma
The participants of this study saw family and community stigma as an obstacle in the provision o f healthcare.Adebayo et al. (2004:54) stated that inform al caregivers o bserve the poverty, stigmatisation and discrimination that people living with HIV and AIDS must endure.Herek and Capitanio (1997:2) mention that the stigma surrounding HIV and AIDS has resulted in HIV positive people being hated and seen as outcasts.
Nobody wanted to be near them and many felt it is almost impossible to take care of them.The stigma surrounding HIV and AIDS also resulted in those infected being denied life insurance, which could serve as a guarantee to buy an apartment or a house (Arber & Knipe, 2001:1532).
HIV and AIDS also compromised the life of those it infects, resulting in illness, loss o f their houses and disempowerment.

Support
Three subcategories, namely family, community, and the clinic, emerged from the category support.

• Community
The theme pity as seen by community members emerged from the subcategory community.Despite cases of rejection, isolation and stig m atisation by the com m unity, p ity is evident when community m em bers act as informal caregivers.Gelaw; Genebo; Dejene; Lemma and Eyob (2001:387) noted that the community did felt pity for TB and HIV and AIDS patients.Neighbours would not speak against people afflicted with TB and/or HIV and AIDS.Apart from an avoidance o f contact with TB patients and their consequent social isolation, the community agreed that TB could have a strong influence on relationships during engagement and married life.

• Clinic
The them e good support from local clinics emerged from the subcategory clinic.The participants spoke o f the support they receive from local clinics.One participant expressed a wish for a hospital facility.These were expressed that they cook and prepare lunch boxes and dish them to their clients because of poverty.
Ndaba  HIV and AIDS (Rassool, 2003:235).Those infected and affected by HIV and AIDS should be p ersu ad ed to activ ely participate, so that their opinions can be analy sed to en su re the proper formulation o f strategies and policies (Rassool, 2003:235).

Recommendations
The following recom m endations are based on the findings o f the study: • The Government should offer informal caregivers relief grants, in order to provide for transport when conducting home visits.The grant should also cover the facilities needed for care giving.

•
Anti-retroviral drugs should be made freely available to patients in order to reduce morbidity and mortality rates.

Recommedations for further research
Because this study was conducted on a small scale in the Odi Sub-District area, the following areas should be further explored, described and quantified: • The experiences of families with patients who receive anti retroviral drugs.

•
The views o f patients who receive food parcels in the area.

•
An evaluation of anti-retroviral programmes in the primary healthcare setting.

References
them es love for their jo b s and accomplishing caring for their clients, fulfilment for what is expected from them, frustrated by the conditions o f work, exploitation by other members o f the families, anger and helpless relating to their work emerged from the subcategory informal caregivers.The participants reported that they love th eir jo b s, especially when cooking for and teaching patients in their homes.They felt that they accom plish the goal o f caring.W oodw ard, A belson, T edford and Hutchinson (2004:180) stated that homebased caregivers render quality care to patients, based on set goals.When care was provided with both knowledge and compassion, the isolation of the patient is reduced, and their dignity and respect maintained(South Africa, 2001 b:4).