CHAPTER THREE

HOME BASED CARE: A LITERATURE REVIEW

INTRODUCTION

The review explores the definition of home based care and the history of this model of

care. An overview of the different home based care models is highlighted and a

comparison is made of home based care and hospital care. The key aspects of managing

the home based carers are discussed in relation to the COC project. It further considers

the integral role of home based care in the fight against HIV/AIDS.

3.1 DEFINITION OF HOME BASED CARE (HBC)

The World Health Organization (WHO) (in Department of Health, 2001:53) defines HBC

as “the provision of health services by formal and informal care givers in the patient’s

home in order to promote, restore and maintain a person’s maximum level of comfort,

function and health, including care, towards a dignified death”. The strength of this

approach is the dignity and privacy it gives to the patient and his/her family to be cared

for in the comfort of the patient’s home. However, a draw back to this approach is the

likelihood of patients wanting to be cared for at home, even with conditions that are

beyond the scope of care for the home based carers.

Chapter Three: Home Based Care: A Literature Review 61

3.2 The history of home based care

Home based care was conceived as a means of alleviating the strain on overburdened and

under-resourced hospitals whilst providing better and more holistic care to chronically ill

and HIV/AIDS patients. Groups of home based carers –often drawn from churches-

would visit patients in their communities, providing them with palliative and spiritual

care, and educate the patients’ families on how to care for persons living with HIV/AIDS.

Home based care was meant to be a support mechanism for the hospital system and the

PLWAs and their families; a way to empower communities to respond to the impact of

HIV/AIDS themselves by supporting them through the process (Edoh, 2004).

When there is a sick or dying person in the house, someone – quite literally - has to care,

whether out of love, duty, or simply a lack of options (Ogden, et al, 2004). Indeed,

research has indicated that up to 90% of illness care is provided in the home (WHO,

2002). Quite often, the burden of care is borne by women and female children (Marenga,

1995). The care work done by women and girls in the household, which includes the

services associated with physical, social and psychological development of family

members, as well as volunteer activities in the community that keep the social fabric in

good order, is referred to in economics literature as the ‘care economy’ (Elson, 2002).

Whenever there is a household crisis, such as an illness, the amount of time and energy

required to care for the person at home increases exponentially. (Ogden, et al, 2004).

Depending on the nature of the crisis or illness, the duration of the increased workload

can be short-or-long-term (Ogden, et al, 2004). HIV/AIDS is a chronic, long-term illness

Chapter Three: Home Based Care: A Literature Review 62

– or in Barnett’s classification, a ‘long-wave disaster’ (Barnett, 1991; Barnett and

Blaikie, 1992). According to Russel and Schneider (2000) most HIV/AIDS patients

spend the better part of their illness at home. Research conducted on home and

community care however suggest that there has been an increase in the number of AIDS

patients being cared for in their homes as public hospitals discharge infected patients to

be cared for by friends and family in line with government policies (Uys, 2001; Akintola,

2004).

Over the past few years, the largely silent epidemic of HIV has grown into a highly

visible epidemic of AIDS throughout the world. As early as 1986, the Committee on a

National Strategy for AIDS (CNSA) for the United States of America described the

system of AIDS care in terms of three components, namely hospital care, out-patient

care, and community-based care. They described the main function of each component

as follows:

• Hospitals: Diagnosis and in-patient therapy, and discharge planning to integrate

patients with out-patient and community agencies.

• Out-patient services: Medical management of patients with AIDS-related

complex (ARC) or AIDS ideally delivered through dedicated AIDS clinics, as

well as counseling and health education.

• Community-based care: this is care occurring at a patient’s home to support or

replace hospital-based care. This includes medication management, palliative

care, and social support (Committee on a National Strategy for AIDS, 1986).

Chapter Three: Home Based Care: A Literature Review 63

Home based care programmes started in North America and Europe when it became clear

that hospital care was too expensive, and that family and other carers found it difficult to

cope on their own with the demanding nature of caring for people living with HIV/AIDS

(PLWA) (Spier and Edwards, 1990). In the USA, the Committee on a National Strategy

for AIDS (1986:101) concluded that:

“If the care of these patients is to be both comprehensive and cost effective, it

must be conducted as much as possible in the community, with hospitalization

only when necessary. The various requirements for the care of patients with

asymptomatic HIV infection, ARC or AIDS (i.e. community-based care, out-

patient care, and hospitalization) should be carefully coordinated.”

In most African countries, there are now well developed home based care programmes

and systems, although access to these programmes is still not universal (Uys and

Cameron, 2003).

The impact of this on health services, families and communities is placing an

overwhelming burden on society at large. In an attempt to deal with this impact, it is

common practice for health care facilities to rationalise services to people with HIV, and

as mentioned earlier, shift the bulk of the burden of care onto the shoulders of home

based carers, households and communities. No wonder that in South Africa, home based

care has become a national policy priority.

Chapter Three: Home Based Care: A Literature Review 64

Any discussion on the care and support of HIV/AIDS patients inevitably turns to the

consideration of how to enlist community participation, both in minimising the impact on

the formal health sector and in meeting the needs of the patients. Community

mobilization becomes a key factor to sustaining the success of home based care and

support programmes. Community mobilization uses deliberate, participatory processes to

involve local institutions, local leaders, community groups, and members of the

community to organize for collective action towards a common purpose. Community

mobilization is characterized by respect for the community and its needs.

Historically, health and welfare services adopted a top-down approach where little

recognition and consideration were given to the reality that communities had an inner

knowledge and capabilities to develop their own resources. The AIDS pandemic has

forced communities to rally together and address the challenges of the disease.

Conventional methods of care and support have needed to be revisited in the light of the

devastation of the disease. Clearly, the social sector leads the HIV and AIDS response.

Allocations via conditional grants to the provinces prove this point. In line with the

National Integrated Plan for HIV and AIDS, National Treasury has allocated HIV and

AIDS funds to three social sector departments: health, education and social development.

This forms the government’s integrated response to the epidemic in South Africa. Budget

2005 has allocated a total of R6, 6 billion for the integrated response for the 2005/6 –

2007/8 periods (Department of Social Development Strategic Plan 2003/4 and 2005/6). It

is evident that classic health services may not be able to extend their outreach to people’s

Chapter Three: Home Based Care: A Literature Review 65

homes and will be unable to address the financial and psychosocial implications of the

disease on the patient and family.

Hospital-based care for the HIV/AIDS patient is, for many, out of the question. Many

cannot afford the drugs or the transport costs of getting their AIDS patients regularly to

the hospitals. AIDS related psychosocial interventions include: information,

communication and education. These can be achieved through technological, peer,

community and counseling services.

Home based care offers some solutions to the problem. It increases the involvement of

the patients themselves, their families and even communities in addressing the harsh

realities of caring for the infected. Traditionally, family members are regarded as the

primary caregivers in most cases. Their motivations to care for their loved ones, who are

ill, are obvious: they do so out of love and a sense of kinship. People dying have a need

to be surrounded by those they are familiar with, and in surroundings that they are

familiar with. This affords them with the control of reliving past memories and

addressing unresolved issues in the familiarity of their homes. Palliative care has been

defined as the combination of active and compassionate long-term therapies intended to

comfort and support individuals and families living with a life threatening illness. It aims

to improve the quality of life at the end of life by relieving symptoms (especially pain)

and enabling people to die in peace with dignity and in keeping with their wishes (WHO,

2002). The focus of home- based palliative care for the dying patient largely fulfills the

patient’s and family’s needs.

Chapter Three: Home Based Care: A Literature Review 66

According to the National Guidelines on Home Based Care and Community-Based Care,

Department of Health (DOH), 2001, home care services can be classified into preventive,

promotive, therapeutic, rehabilitative, long term maintenance and palliative care

categories. Community-based care is the care that the consumer can access nearest to

home, which encourages participation by people, responds to the needs of people,

encourages traditional community life and creates responsibilities (DOH, 2001). These

patient- and family-centered approaches use the skills of interdisciplinary team members

to provide a comprehensive continuum of care including spiritual and emotional care

(WHO, 2001).

Additionally, families are an ideal entry point for educational messages about HIV/AIDS

prevention in communities. Community volunteers or home based carers have partly

filled this gap by participating in home-based care. Experiences from the Community

Outreach Centre, St Mary’s (COC) in Mariannhill, Kwa Zulu Natal, show that home

based carers, under the supervision of experienced nurses, can be an efficient and

effective means to extending services to the neediest.

Recent developments in disease and illness management show the value of home based

care in dealing with the issues that HIV/AIDS raises. Some of these issues are:

procurement of high quality male and female condoms; Sexually Transmitted Illness

(STI) management; life skills and HIV/AIDS education; Tuberculosis control and

integration with HIV/AIDS; prevention of mother-to-child HIV transmission (PMTCT);

vaccine development; and blood safety.

Chapter Three: Home Based Care: A Literature Review 67

In many instances home based carers are leading the communities’ responses in

prevention and care initiatives. Far from becoming incapacitated victims of HIV/AIDS

and poverty themselves, their resilience is inspiring. NGOs and Faith Based

Organizations (FBOs) have a very important and leading role to play in bringing about

changes in the way in which home based carers are treated.

The role of home based carer can be seen as:

• Care that is based outside the conventional health care facilities (hospitals,

hospices, health centres) but has some connection with the formal health and

welfare sectors;

• Care that addresses any aspect of ‘continuum of care and support’, from the time

of infection to death and to the psychosocial and economic impact on the

survivors.

The ultimate goal of HBC is to provide hope through high-quality and appropriate care to

assist ill people and their families to maintain their independence and achieve the best

quality of life in the comfort and familiarity of their own homes. Home based care

structures offer home based carers training on how to care for patients in a variety of

ways. They train home based carers to counsel patients and their families, help to monitor

medication needs, teach the primary caregivers about symptomatic treatment and monitor

the needs of the children in these homes. One of the most lasting benefits of home based

care is the way in which it reduces the stigma surrounding HIV/AIDS, as the community

Chapter Three: Home Based Care: A Literature Review 68

sees the way these home based carers touch and care for those who are infected by

HIV/AIDS. Seeing other members of their society valuing the lives of those who are ill

changes perceptions of whole communities (DOH, 2002). The home based carers’

attitudes towards their patients empowers the community to address its misconceptions

and prejudices about HIV/AIDS, making the community less scared and less inclined to

reject those infected by the disease. The World Health Organization (2001) suggests the

need to develop a structured approach to home based care that involves beneficiaries and

their families, as well as communities.

Home based care may not be the ultimate answer to care for the HIV/AIDS patient or

other chronic illness. However, it offers an alternative to:

• Clinic based care for those who suffer from chronic or terminal illnesses;

• Those who cannot afford clinic based care; or

• Those who prefer being treated and taken care of in their natural, familiar

environment.

Home based care may well be a viable solution to providing for basic needs of the

chronically ill, in environments where resources are constrained. Home based care

assures high quality of care whilst at the same time conscientises families and

communities to the pivotal role they have to play in the fight against the pandemic of

HIV/AIDS. Well-organized and well-funded home based care programmes may provide

basic care to those who cannot seek clinical care because they cannot access it for

Chapter Three: Home Based Care: A Literature Review 69

different reasons. Some of these reasons could be the lack of funds to transport patients to

hospitals or clinics; the long distance that patients have to travel to get to health

institutions; and the compromised position some health institutions find themselves in, as

a result of having to cope with the influx of patients.

Through its participatory approach involving and sensitizing a broad spectrum of

community members, home based care may provide an opportunity for the alleviation of

stigma that People Living with AIDS (PLWA) are confronted with. By openly and freely

caring for PLWAs, the home based care send a clear message that HIV is not transmitted

by the simple act of caring for a person. Home based carers also send a clear message

that PLWAs are not ‘social lepers’ that must be ostracized and banished from the

mainstream of the community but rather that with care, love, support and understanding,

PLWAs can be integrated into families and communities as functional, contributing

members.

3.3 MODELS OF HOME BASED CARE

Thus far, most home based care services have been established through unsystematic,

needs-based efforts (Uys and Cameron, 2003). As the HIV/AIDS pandemic continues to

grow, many organizations and communities recognize the need to expand in a more

pragmatic manner. Countries are looking for ‘scaled-up’ responses and national strategies

for home based care. A key to this is to understand what home based carers dealing with

HIV/AIDS really need, to keep them engaged in these programmes. It is expensive to

Chapter Three: Home Based Care: A Literature Review 70

provide the basic training in home based care and management of a HIV/AIDS patient; so

therefore, it is a critical objective to reduce the dropout rate of the home based carers.

Home based Care organizations recognize the importance of providing home based carers

with adequate training.

These trainings should include:

• General basic nursing care

• Training primary caregivers in home based care

• Counseling services of patients and families

• Assessments of basic needs (food, shelter, clothes etc)

It has given little or no attention to researching their needs and ways of sustaining their

involvement in volunteer capacities. The time has come for home based care services to

develop empirically validated programmes for home based carers that fulfill their needs

so that they will continue to provide meaningful services to HIV/AIDS sufferers and their

families, in their own communities.

A number of different systems on home based care have been reported on in the literature

namely Uys and Cameron (2003); Louden (1999); and Defilippi (2005):

Chapter Three: Home Based Care: A Literature Review 71

3.3.1 Integrated home based care

This model works by linking all service providers with patients and their families in a

continuum of care. The aim is to enhance mutual support between the different systems:

patient, family, home based carer, hospital, clinic, and NGO. This system allows for

referral between all partners as trust and capacities among these partners develop. The

patient and family are the focus of the care and support. The small group is supported by

a larger network of services (home based carers, clinics, hospital), and the larger

community (Uys and Cameron, 2003). The care given is based on home based care and

palliative care standards. Its primary purpose is the prevention of illness, and related

complications, by increasing openness and understanding among participants, hereby

changing behaviour (Louden, 1999). The research facilitator believes that an additional

motivation for this model is its emphasis on support. Open support of the HIV positive

patient and family encourages people to better understand the disease and makes them

open to learning new skills about how to control and manage it.

3.3.2 Single service home based care

In this model, one service provider (a hospital, a clinic, a NGO, or a FBO) organizes

home based care by recruiting volunteers, training them, and linking them to patients and

their families at home (Uys and Cameron, 2003). While this is largely how most home

based care initiatives started out, it soon became evident that networking with other

stakeholders was crucial if the intention was to provide holistic and adequate home based

care.

Chapter Three: Home Based Care: A Literature Review 72

3.3.3 Informal home based care

In this model, families are helped to care for their sick members in their own homes, with

the informal assistance of their own social network. Nobody has any specific training or

external support, and there is no structured or organized intervention (Uys and Cameron,

2003). This model held true during the pre HIV/AIDS era. Since the onset of the disease,

it has become increasingly important that home based care becomes more formalized and

organized.

The ideal would be if all home based care could be delivered via the integrated model.

This model ensures that the patient and family receive all the care and support they need

from the point of diagnosis through to terminal care. Support is made available to the

families when the patient dies. This model ensures that the quality of care is optimal,

since there is regular supervision and support from the home based carers and the

‘employing’ NGO/FBO who strive to improve care. Because this model relies on high

levels of recruitment and involvement we witness the single service home based care

model more frequently being used and this will continue until more partners can be

recruited and formal structures are put in place. Informal home based care is very

strenuous because those home based carers have to deal with the burden of lack of

necessary skills, training, knowledge and emotional tenacity to care and support their

patients. The models may be viewed as a progressive continuum of care process as

outlined below.

Chapter Three: Home Based Care: A Literature Review 73

 Informal home Single Integrated
based care service home home based
based care care

Figure 1: Progressive continuum of care process

The challenges facing the progressive continuum of care process are as follows:

• Often, informal care may be the beginning and end of the continuum of care

process. Accessing health facilities is difficult due to a lack of transport/funds to

get to institutions, or even a lack of awareness of the existence of such

institutions. In such instances, the families are expected to rally together, as best

as they can, to care for the patient - often in the process exposing himself or

herself to the virus.

• As discussed earlier, single service home based care services such as hospital

outreach programmes and clinics, are finding it increasingly difficult to cope with

the flood of desperate patients trying to access their services. Many such

institutions are being forced to impose a cut-off quota for the day, such as shutting

their doors after the first 150 patients have been registered. Addington Provincial

Hospital, in Durban, and the [Link] Provincial Hospital in Chatsworth are two

such hospitals that have been forced to adopt a similar stance to cope (The Rising

Sun, 2005). This is the last resort that health care institutions are exploring and

adopting, but as they cannot meet the demands for their services, patients rely

Chapter Three: Home Based Care: A Literature Review 74

 more and more on their families and communities to care for them. The family

often carries the burden of care.

• Integrated home based care poses many challenges even though it is largely

viewed as the ideal model. This model relies heavily on trust that the other

‘partners’ will provide their services adequately and effectively and that

networking will be an ongoing process among the different systems. Most home

based care organizations/systems are governed by their own constitution, values

and policies. While all have one common aim: the home based care and support

of the patient and the family, trying to synchronize these efforts remains a

challenge.

3.4. HOSPITAL- BASED CARE VERSUS HOME-BASED CARE IN TREATING

PEOPLE LIVING WITH HIV/AIDS

There are two ways of caring for people living with AIDS: hospital-based care and home

based care. As mentioned hospital-based care fails to cope with the overwhelming

number of patients suffering from HIV/AIDS, at a time when there has been an increase

in the exodus of medical staff overseas. Hospitals and other health facilities are over

burdened because they are either short staffed or staffed with inexperienced members. As

hospital –based care is unable to deal with the scourge of HIV/AIDS, the second option:

home based care, has become more prominent.

Chapter Three: Home Based Care: A Literature Review 75

Table 1: Comparisons between hospital-based care and home based care (Beechey,

J. 2004:76).

Hospital-Based Care Home-Based Care

High costs to set up and run Low cost in comparison to hospitals
Focus of care is on the disease Focus is the whole person

Quality of medical care is good Quality of medical care is good

Non-medical care is not available Non-medical care is available
Relationships exists with medical staff only The patient is part of a web of relationships
including medical staff, volunteers,
community and other HIV positive people
Awareness and prevention are regarded as Awareness and prevention are integrated
separate activities
Patients are referred to outside Patients are helped to access hospital
organizations to access long-term, holistic treatment when needed
care

This table reveals that there are many positive indicators why home based care is an

attractive alternative. Rather than just visiting a hospital for treatment, a HIV positive

person becomes part of a network of caring relationships. These networks support them

medically, as well as provide socio-emotional support, whilst simultaneously

encouraging the patients and their families to remain healthy. Home based care facilities

develop links between the HIV positive patients and their families, with other people

living with HIV/AIDS who understand what it means to be HIV positive. Care and

support is holistic and inclusive because the patient is cared for physically, emotionally,

spiritually and socially cared for by trained home based carers with the aim of healing

Chapter Three: Home Based Care: A Literature Review 76

their bodies and souls. Hospitals are finding it increasingly difficult to provide such

holistic support. A holistic approach is particularly important in a disease that may last

for many years and has such wide-ranging social ramifications. Perhaps the most

important difference between hospital and home based care is the support groups that

arise out of this care – both for the patients and the home based carers.

Support groups popularity is grounded in the fact that the existing health institutions

networks continues to leave a gap of unmet psychosocial needs. These unmet needs can

often be alleviated by mutual aid provided by people who share a common experience.

Mutual aid complements professional help by adding a dimension of support that is best

provided by other members of the group in need. Themes of discussion in support groups

include the emotional impact of illness, the meaning of illness, family difficulty, and

problems of intimacy, sense of isolation/stigma, role changes, and cancer-specific

concerns.

3.5 BENEFITS OF HOME- BASED CARE FOR PEOPLE WITH HIV/AIDS

As discussed by Uys and Cameron (2003), the benefits of home based care may be

summarized as follows:

• It affords the patient and the family time to come to grips with the illness, and the

impending death of the patient.

• It is less expensive for the family because problems with transport to the

hospitals/clinics, time spent on hospital visits, and other related costs are reduced.

Relatives can care for the patient while doing other chores.

Chapter Three: Home Based Care: A Literature Review 77

 • Care is more personalized, and the patient is likely to feel less isolated from

family and friends.

• People prefer to face ill health and death in familiar surroundings rather than a

clinical hospital ward.

• Home based care is less expensive for the country than institutional options

(hospitals, hospices) since periods of say at those institutions are reduced.

3.6 KEY ASPECTS OF MANAGING HOME BASED CARERS

Key aspects that require special attention when managing home based carers include:

motivation, special needs of home base carers, recruitment and selection of home based

carers, training of home based carers, and the retention of home based carers.

3.6.1 Motivations of home based cares caring for PLWAs

It can be argued that volunteering demands a relatively high level of commitment from

individuals. It is much easier to write a cheque for charity than to devote hours, or even

days, of one’s time to volunteering. Yet charitable organizations and NGOs depend on

volunteer efforts as much as they do on funds. Therefore, understanding motivations and

expectations as they relate to volunteering, may ultimately help organizations make the

adjustments that allow them to sustain a stronger, and longer serving, volunteer base.

Akintola (2004) describes 7 broad factors that motivate home based carers to volunteer in

care activities. They are:

Chapter Three: Home Based Care: A Literature Review 78

 • Pure altruism: UNAIDS (2000) notes that there is a strong sense of community

and a rich tradition of doing community work and reaching out to one’s neighbour

or sick friend in Africa. Because people are dying in large numbers in

communities, it is difficult for us to ignore. Members of communities, who are

compassionate, see volunteering as a way of contributing their own quota to

solving common problems that are currently bedeviling their communities. Most

caregivers mentioned their love and empathy for the sick as their primary reason

for becoming volunteers. They try to place themselves in the shoes of the sick

(Akintola, 2004).

• Unemployment: Lack of employment is a common denominator among people

who have volunteered to be caregivers. Most home based carers apply to

participate in the programme because, in addition to other motivations, they do

not have any work and have time to spare. Some mention the fact that they do not

want to stay home doing nothing since it is not healthy to do so. They decide to

engage in something that is productive whilst they continue their job search.

Many, however, find that they became so emotionally involved in care giving that

it is difficult to quit even when they find employment (Akintola, 2004).

• Hope of future reward and reciprocity: The hope of future reward was a

pervasive theme given by home based carers for volunteering. Some home based

carers see volunteering as ‘sowing a seed that will later be rewarded’. They

believed that they will be cared for if they ever have similar needs in the future.

Chapter Three: Home Based Care: A Literature Review 79

 Some volunteers state that the hope for some sort of reward from the government

is one of the motivations for giving care. Although in most cases this is not a

primary reason it as an underlying wish (Akintola, 2004).

• Religious considerations: There are also religious considerations in volunteering

as caregivers. Some volunteers indicate that it is godly to volunteer (Akintola,

2004). There is a common belief among some that volunteering is synonymous to

doing God’s work. They see their role as home based carer as an enactment in the

image of God, therefore giving them a closer link to Him.

• Experience of HIV/AIDS in the family: Many of the home based carers

experience HIV/AIDS in their households and therefore feel the need to acquire

skills to deal with the situation. Some of the people who enroll as home based

carers recognize the need to give adequate supportive care to HIV/AIDS patients,

because of the chronic nature of the disease, and the complex nature of the

activities that are required to care properly for the sick. Some volunteers

experience multiple illnesses in their families and believe that if they are trained

to care for the sick it will be of great help to them in dealing with their own

families (Akintola, 2004).

• Previous experience or interest in paramedic or community work: Experience

with medical or paramedical work is a motivating factor among home based

carers. A study by Uys (2001) reports that many of the subjects in her study of

Chapter Three: Home Based Care: A Literature Review 80

 home-based care of the Department of Health in the seven pilot sites in South

Africa, had previous experience in community or paramedic work. This might be

due to the fact that the home-based care model evaluated by Uys required that one

have a previous experience with community care as one of the criteria for

recruitment into the programme (Akintola, 2004).

• Hope of securing employment: As noted by UNAIDS (2000) the hope of

securing a job is a covert reason for people to volunteer as home based carers.

While home based carers do not make this explicit; this information was not

readily given by any of them. Some studies indicate that some ‘volunteer’ home

based carers receive some form of stipend to cover some of their expenses

(UNAIDS, 2000; Uys, 2001). Instead, and in the absence of funds, volunteers

occasionally receive incentives like biscuits, soaps, and cosmetics among others,

which have been donated to the programme (Akintola, 2004). This satisfies their

material needs to some degree.

As discussed earlier, there is a paucity of literature on the motivations and expectations of

home based carers caring for HIV/AIDS patients. In the absence of the desired empirical

evidence, the research facilitator interviewed four project managers and staff of home

based care organizations to establish what perceptions they had about the motivations of

their home based carers. These organizations were: Sinosiso Home Based Care

Programme, The Dream Center, Hope and Family Life Foundation, and St Clements

Home Based Care Programme.

Chapter Three: Home Based Care: A Literature Review 81

No formal research had been conducted into the needs, motivations and expectations of

their home based carers at any of these organizations. The information gleaned was from

the project managers’ and staff’s personal observations and their informal discussions

held with their home based carers, that they had gathered over a period of time. The

following organizations were interviewed:

• Sinosiso Home Based Care and Orphan and Vulnerable Children Programme –

situated in Amanzimtoti, south of Durban, it provides free home care services to

people living with HIV/AIDS and their families. It also provides outreach to

chronically ill and aged clients in the community. Sinosiso means “We Help” in

Zulu. This programme offers Home Based Care Service, Orphan Care, Training,

and Anti Retroviral Clinic Services. The Catholic Archdiocese of Durban AIDS

Care Commission (CADACC) coordinates the project.

• The Dream Centre - a ‘step down’ facility for HIV/AIDS patients, situated in

Pinetown, east of Durban. A ‘step-down’ facility, in the context of the health

setting, can be described as a non-hospital based continuum of care facility for the

HIV positive patient. It encourages family intervention and support. The Dream

Centre is a Section 21 company, registered under the name of the Mophela

Housing Trust. It operates as a mission/outreach in association with Ambassadors

for Christ, Canada. It is a NGO facility that provides institutionalized home based

care for the non-hospital based continuum of care for HIV/AIDS patients, and

terminal or Palliative Care for HIV/AIDS patients.

Chapter Three: Home Based Care: A Literature Review 82

 • Hope and Family Life Foundation – is recognized as a capacity building

organization, which is situated in Mariannhill, east of Durban. The church, in

response to the breakdown of family life, started this initiative. This NGO

promotes healthy Christian family life that upholds the dignity of life and

empowers individuals, families and communities through counseling, education,

training and development. Two programmes drive this organization: their

HIV/AIDS Desk and the Children’s Centre.

• St Clements Home Based Care Project – offers a home based care programme in

Clermont/Kwa-Dabeka district, north of Durban. This project renders supportive

services to people affected/infected by HIV/AIDS. Service delivery includes:

home based care, the distribution of food parcels, a meals-on-wheels scheme, and

services to Orphan and Vulnerable Children.

The research facilitator conducted twelve interviews over a period of one year with the

aforementioned project managers and staff, using semi-structured interviews. While the

common themes cited were grouped together and are presented below, the themes that

emerged have been further consolidated in Chapter Six.

• Empowerment: Training and skills acquisition empower the home based carers to

volunteer. Being unskilled, home based carers are anxious to secure any

opportunity to be trained.

Chapter Three: Home Based Care: A Literature Review 83

 • Personal experience with death and illness: Many home based carers have either

lost a loved one to HIV/AIDS or have a loved one infected by the disease.

Joining a home based care organization seems to offer them renewed hope and

helps them to work through their experiences of hopelessness.

• Religious reasons: All of the organizations that were interviewed are faith-based

and a strong Christian ethos predominates in each of them. The home based carers

have strong Christian backgrounds steeped in African tradition. They believe that

doing good to others will in turn bring good upon themselves and their off spring.

Interestingly, a similar finding was made in this study as can be read in Chapter

Six. A strong sense of Ubuntu (spirit of care and support) predominated.

• Hope of employment: Some home based carers hope to secure employment as a

direct result of the training they receive from their respective organizations. When

home based carers manage to secure employment, the home based carers who are

left behind see this as something to aspire towards and their hope is renewed.

Most hope to be employed by the organization where they volunteer.

It is hoped that the research undertaken would offer empirical validity to the observations

of the service providers.

An understanding of home based carers’ motivations for volunteering is critical to

understanding their role in mitigating the burden of caring for people living with

Chapter Three: Home Based Care: A Literature Review 84

HIV/AIDS (Akintola, 2004). Although many of them are unemployed and themselves

living in poverty, they are generally driven by magnanimity and the will to make the lives

of their patients better. They carry out their work with a sense of commitment and

dedication earnestly seeking to end the misery of community members. In the process

they often confront other problems that complicate their lives and that of their families.

Indeed these volunteers constitute the backbone of the home based care

programmes/projects. They are an invaluable resource to affected households,

communities as well as the health care system. A strong theme that emerged from these

interviews was that there are no formally agreed upon measures in place to motivate

home based carers – this is done informally and varies from organization to organization

(Akintola, 2005).

3.6.2 Individual needs of home based carers

All volunteers have their individual needs that motivate them to volunteer. Similarly, all

organizations, including NGOs, identify particular areas of work for home based cares in

an effort to attempt to ensure that their needs are met. Fisher and Cole (1993) indicate

that organizations wishing to attract and retain volunteers need to be sensitive to the

needs that are dominant among those they seek. Psychological needs influence

individuals to participate in volunteer activities. As summarized earlier in the chapter, the

needs of each individual volunteer may vary, but from literature, the following general

needs of volunteers are identified: the need for personal satisfaction and recognition;

personal contact; good quality training; the need for accomplishment; doing good or

helping those less fortunate; an opportunity to learn and develop new skills; and

Chapter Three: Home Based Care: A Literature Review 85

expression of ones social and religious commitment. Some of these needs will be

discussed in the context of the COC setting.

• Personal satisfaction and recognition – COC recognizes this unselfish, noble

gesture of serving their people and community by providing incentives to the

home based carers and awarding them with certificates at the end of their

trainings. Some of the incentives are: edibles like biscuits; food vouchers; sanitary

pads; free medical treatment at the St Mary’s Hospital. The Hope and Family Life

Foundation provide their home based carers with transport fees and meals for the

days when trainings are provided. Sinosizo Home Based Care and Orphan and

Vulnerable Children’s Programme also offers a similar incentive scheme as

above.

• Training – the COC recognizes the need for good quality training and as such has

a structured training curriculum that home based carers are trained in.

• Personal contact – following close on the need for personal satisfaction, the

home based carers value the contact they have with the patients and the help that

they bring to them. They also value the contact they have with the organization,

the manager, the staff and other volunteers of the organization.

Understanding the needs of the home based carers, and the needs of the COC, plays an

important part in the recruitment and retention of the home based carers at COC.

Chapter Three: Home Based Care: A Literature Review 86

3.6.3 Recruitment and selection of home based carers

As outlined in Chapter Two, Lauffer and Gorodezky (1977) state that recruitment

requires more than just “putting the word out” – it requires having systems in place to

effectively manage the volunteers. Home based carers need to be carefully screened and

recruited into care giving programmes. Home based care organizations often utilize a

whole day in the careful screening of prospective home based carers. This is to ensure

that as far as possible the prospective home based carers are aware of what the tasks

entails and the organization feels confident in investing its time and resources in

upgrading the home based carer. Ultimately, the continuity of uninterrupted service

delivery to patients is paramount.

3.6.4 Training of home based carers

Training home based carers is essential if they are expected to provide good, quality care.

Most organizations utilizing home based carers have, in place, a training schedule. While

the training modules may differ among organizations with regard to the numbers of

courses offered and the duration of the courses, all home based care training focuses on

teaching basic nursing skills, and emphasizes the practical care of the patient in the home

The COC has a training curriculum that is compulsory for every home based career to be

trained in. The COC also has optional, specialized training opportunities, for example,

Palliative Care and Child Care, that home based carers are selected to undergo, based on

their performance and skills while in the programme. The COC also provides refresher

training courses and in- service training (COC Fact Book, 2005). The aim of the training

Chapter Three: Home Based Care: A Literature Review 87

offered by the COC is to ensure that the home based carers are skilled and knowledgeable

in the care of their patients and that they, as volunteers, are empowered and capacitated to

upgrade and eventually seek formal employment.

3.6.5 Retention of home based carers

In any organization, management wants to retain volunteers, especially when much time,

money and resources has been invested in recruitment and training. Currently, the COC

has 352 trained and active volunteers in its programme, 40% of whom have been

volunteers for five year and more (COC Fact Book, 2005). In 2004, 49 volunteers left the

COC to take up formal employment – some at COC itself, some at the St Mary’s

Hospital, and the rest elsewhere. Interestingly, most of them still continue to volunteer as

home based carers in their spare time (COC Fact Book, 2005).

SUMMARY

There are currently still thousands of PLWAs, and their families, who are not being cared

for by a dedicated home based care team. Where such programmes have been

implemented and evaluated, PLWAs and their caregivers, as well as health service

providers, are all convinced of their intrinsic value (Uys, 2001). Clearly, a need exists for

more services like those to be set up. This is not one organization’s task, but the

responsibility of every community and service provider (Uys and Cameron, 2003).

Chapter Three: Home Based Care: A Literature Review 88

The literature review presents a working definition of the term ‘home based care’ and

looks at the history of home based care. The literature also describes the three models of

home based care: integrated home base care, single service home based care, and

informal home based care. The reviewed literature provides a comparison between

hospital-based care and home-based care in treating PLWAs. The literature also

highlights the benefits of home based care with particular emphasis on the personalized

nature of care, and the cost effectiveness of care, that only home based care can offer.

Key aspects of managing home based carers were discussed and the literature reviewed

provided one with a comprehensive understanding of the intrinsic motivational factors,

needs, and expectations of volunteers providing home based care. Intrinsic motivational

factors were described as: pure altruism, unemployment, hope for future reward and

reciprocity, religious considerations, personal experiences of HIV/AIDS in the family,

previous nursing or paramedical experiences, hope of securing employment,

empowerment, and personal experiences of death and illness in families. Needs of home

based cares were described as the need for personal satisfaction and recognition; personal

contact; good quality training; the need for accomplishment; doing good or helping those

less fortunate; an opportunity to learn and develop new skills; and expression of ones

social and religious commitment. The review ended with a discussion on the recruitment

and selection, training, and retention of home based carers as key aspect in the effective

management of home based carers.

Chapter Three: Home Based Care: A Literature Review 89

The review showed that despite the acknowledgement in the literature of the importance,

and the value of the home based carer in the step-down care of HIV positive patients,

very little locally specific research is available on the motivations and expectations of

home based carers. While there is an abundance of literature focusing on the impact of

HIV/AIDS on the government and communities, this review has shown that much of it

has been drawn from anecdotal sources. Why this has arisen is not clear. Stein (2003)

suggests that perhaps the speed and magnitude of the HIV/AIDS pandemic justifies the

use of untested theories. Clearly, there is a need for a greater body of scientific evidence

on home based carers’ motivations and expectations.

While Akintola (2004) provides a useful guide to understanding the motivations of family

care givers, his research failed to differentiate family care givers from home based carers.

It is acknowledged that while family care givers could also be home based carers, and

vice versa, it is very important to make this distinction, as the level of emotional

involvement in the care of a family member will invariably be greater than the emotional

involvement in the care of an unrelated patient. Consequently, the motivational factors to

voluntarily care would also be affected.

Akintola’s (2004) research failed to reflect the specific profile of the larger Mariannhill

region’s home based carers and just concentrated on two communities in Ward Seventeen

of Mariannhill. The unique characteristic of the Mariannhill region, and its dwellers, was

not fully captured as a result of this confinement, and therefore, generalizations cannot be

made on the Mariannhill region and its dwellers.

Chapter Three: Home Based Care: A Literature Review 90

Sadly, not much locally specific literature on home based care, and in particular on the

motivations, needs and expectations of local home based carers, was available. Having

largely used Euro centric literature, its relevance to the African setting is contentious.

However, with HIV/AIDS being a global issue, and with most countries struggling to

cope and contain this pandemic, the literature lends support and credibility to the

different and unique models of home based care developed in an attempt to best deal with

this global crisis.

The response from the communities and families to alleviate the impact of HIV/AIDS on

the care of the patients has been forthcoming. NGOs, CBOs, and FBOs have also

responded with a wide range of impacting programmes on home based care and support

(Uys and Cameron, 2003). There seems to be no doubt that volunteer/home based care

mobilization seems to be the backbone of NGOs, CBOs, and FBOs (Edoh, 2004).

Consequently, there needs to be more formal and scientific evaluations to assess home

based carers’ motivations and expectations in their roles as volunteer, giving way for the

need for further study in this regard.

Chapter Three: Home Based Care: A Literature Review 91