Compensation for caregivers:
Good practice recommendations
summary report
By Debbie Budlender and Nina Hunter
March 2014
Introduction
This summary report draws on the findings from the composite report of a study of
compensation of caregivers providing home-based care (HBC) in respect of HIV and
AIDS (human immunodeficiency virus and acquired immunodeficiency syndrome) and
other diseases and conditions (see ‘Compensation to caregivers: An exploratory study
on roles and attitudes in respect of caregiver support’).
The study was commissioned by Tearfund
on behalf of the Care and Support Working
Group of STOPAIDS (previously known as the
UK Consortium for AIDS and International
Development), a UK-based network of
more than 80 not-for-profit, faith-based and
academic agencies.
The objectives of the study were to explore
the understanding, practices and attitudes
of international and local non-governmental
organisations (NGOs) towards caregiver
support, in terms of caregiver retention, support
and compensation.
The study responded to concern among
network members that ‘care and support’
had become the ‘forgotten pillar’ of the
2006 UN Political Declaration on HIV, which
committed to universal access to prevention,
treatment and care and support. It also
Photo: Chris Boyd/Tearfund
Caregiving takes many forms. Mother Buddies in Malawi
support pregnant women through delivery and after birth,
reducing vertical transmission of HIV and improving both
maternal and infant health.
2
responded to perceived increasing interest,
including among international development
agencies such as the United Nations agencies,
about care work – and particularly unpaid
care work.
The terms of reference for the research noted
that the 2004 UNAIDS report on the global
HIV epidemic estimated that in sub-Saharan
Africa, around 90 per cent of care for people
living with HIV and AIDS was provided in the
home by family or community-based caregivers.
In line with common usage, we refer to the
family caregivers as ‘primary’ caregivers and
the community-based non-family caregivers
as ‘secondary’ caregivers or ‘community’
caregivers. It is the role of and compensation for
the secondary/community caregivers that is the
focus of this study.
Further, the terms of reference pointed to
the work of both primary and secondary
caregivers as being of critical importance
in terms of meeting the desired increased
demand for health services at the community
level, extending the reach of health service
delivery, providing care where people are most
comfortable, often in the home, and reducing
the financial and human resource burden of
government. However, there was less evidence
and understanding of the extent and nature of
community-based care and support. There was
also limited consideration of the best approach
for supporting and compensating caregivers. In
the words of the terms of reference, these gaps
had ‘led to haphazard approaches to address
caregiver support and an inadequate evidencebase for promoting caregiver compensation
amongst development partners (ie donors) and
national governments.’
Compensation for caregivers: Good practice recommendations
The research was initially framed on an
understanding that there would typically be
several layers of actors in respect of community
caregiving. Thus the caregivers would be
recruited and ‘employed’ (but generally without
monetary compensation) by a communitybased organisation (CBO), supported by a
local NGO intermediary, which would in
turn be supported by an international NGO
(INGO), receive funding from various sources,
including international donors. The research
was thus seen as focusing on the role of both
the international and local NGO intermediaries.
In line with this focus, there was an interest
in issues of accountability of local NGOs to
INGOs, and of INGOs to their own donors
in respect of compensation for caregivers. In
practice, the initial interviews with INGOs
suggested that there were not necessarily
separate local NGOs and CBOs, with the link
between the INGOs and the implementing
partners more direct than initially assumed.
Methodology
A multi-method approach was adopted, including:
l A limited literature review of core
documents produced by the network and
other key actors on compensation for
caregivers, as well as documents referred to
by INGO interviewees;
l In-depth interviews with eight
representatives of INGOs (Catholic Agency
for Overseas Development, Help the
Hospices, mothers2mothers, Save the
Children, Tearfund and Voluntary Services
Overseas), providing support for caregiving in
Zambia and Zimbabwe;
l In-depth interviews with a key government
official in each country, and with a
representative of the Department for
International Development (DFID) as a
key donor in Zambia. Attempts to secure
an interview with a development partner
representative for Zimbabwe were
unsuccessful;
l Country case studies in Zambia and
Zimbabwe of projects supported by different
INGOs. These countries were chosen
because they were those in which the largest
number of consortium members were or had
been active. With each of the two countries,
two projects, representing interventions
supported by different INGOs, were chosen
© STOPAIDS and Tearfund 2014
as project case studies. The Zambian case
studies were Mwazwini Home-Based Care
(a VSO-supported organisation) and St
Peter’s Home-Based Care (a CAFOD-funded
organisation). The Zimbabwean case studies
were Family AIDS Caring Trust (FACT)
(funded by Tearfund) and Zimbabwe National
Network of People living with HIV (ZNNP+)
(a World Vision-funded organisation).
The Zimbabwe case study also collected
information on Island Hospice, an NGO that
provides training for caregivers of FACT but
also itself employed caregivers. The two
country studies are reported on in more
detail in separate reports (‘An exploratory
study on roles and attitudes towards
caregiver support: Zambia case study’ and
‘Tearfund: Zimbabwe case study’).
Local researchers were contracted to conduct
the Zambia and Zimbabwe case studies (Joseph
Simbaya and Rodwell Chaitezvi respectively). To
enhance comparability, the same interview and
focus group research instruments were used for
all the case studies.
Consortium partners were engaged at various
steps in the research. Shannon Thomson of
Tearfund played a lead role in guiding and
supporting the research. She ensured that other
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consortium members were informed about
and comfortable with the terms of reference
and choice of researchers. Some consortium
members also saw and commented on interim
products and, in particular, the write-up of
the INGO interviews. Shannon used the
opportunity of a STOPAIDS Caregiving Seminar
in November 2013 to present interim findings
from the country case studies.
Main research findings
HBC in the narrow sense was initially introduced in response to the inability of the
formal health system in developing countries affected by HIV and AIDS to respond to
the need for care of patients. In essence, the HBC caregivers were performing a role
that should have been performed by the formal health system.
It is recognition of this fact that constitutes
one of the strongest motivations for adequate
compensation to be given to community
caregivers. However, the nature of caregiving
has changed with the availability of antiretroviral therapy (ART). Caregivers have
faced new tasks. It seems that in many cases
they might not have been adequately trained
for these tasks, and may not even be the
best people to do all the tasks. If ART has
changed the scenario, with fewer desperately
ill and dying patients, the need for and role of
caregivers may need to be reconsidered.
Availability of funding has decreased markedly
for HIV care and support. In some cases this
deprioritisation of care funding reflects the
perception that care is no longer needed in the
same way. In other cases it reflects a shift in
focus of major donors to ‘systems strengthening’
rather than funding of direct delivery. The
limited past support and compensation
previously available for caregivers has been
further curtailed. The reduction ranged from
provision of food to availability of regular
training.
Despite all these constraints and limited (if any)
compensation, many caregivers continued with
their tasks and continued to gain pleasure from
improving the well-being of fellow community
members. Such perseverance was most likely
where caregivers had personal reasons for
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continuing such, as religious faith and conviction
or the benefits for their own HIV-positive status
they derived from the project.
In addition to the themes summarised
above, the research highlighted a range of
contradictions and complexities. These included
the following:
l A mismatch between what is contained in
country policies and what is found on the
ground;
l A mismatch between the compensation and
support that INGOs report is provided to
caregivers and what is found on the ground;
l A mismatch between what is reported by
different key informants, such as those from
government and development partners;
l A wide range in the type and extent of
support provided by INGOs to the local
caregiving projects which they report they
support (which then implies a wide range
in the extent to which INGOs can influence
the support and compensation provided to
caregivers);
l A multiplicity of types of caregivers and
ongoing expansion of understanding of what
‘care’ involves.
A number of good practice recommendations
for INGOs can be derived from the research
with regard to different forms of compensation
and support, as follows.
Compensation for caregivers: Good practice recommendations
Good practice recommendations
This section includes good practice recommendations with regard to caregiver support
and compensation, caregiver retention, and some issues relating to governance, namely
accountability and project financing.
Caregiver support and
compensation
Financial compensation
This refers to monetary compensation for the
caregiving work undertaken by the caregiver.
The UK Consortium (2011a) recommends that
governments, donors and NGOs work together
to ensure a ‘minimum stipend that meets all
their care costs and is standardised nationally
among NGOs, governments and donors’ in
the medium to long term. GEMSA and VSORAISA (2010) argue that since caregivers are
doing government’s work, they have a right
to financial reward. The remaining literature
shies away from making recommendations on
financial incentives for caregivers, usually citing
the unsustainability of donor funding and lack
of government funding for such payments or
‘incentives’. Arguments against paying caregivers
Photo: Alice Dube/Tearfund
Palliative Care care kits provide caregivers in Zimbabwe
with what they need to support their clients.
© STOPAIDS and Tearfund 2014
include that the introduction of cadres of paid
workers could erode the ethos of volunteerism.
One of the INGOs – Help the Hospices (HtH)
– plans to provide for financial compensation,
but the amount is below even the US$14 per
month recommended by the Zimbabwean
government. Another INGO, m2m, did provide
financial compensation during the duration of
the project, but this INGO is no longer active
in either Zambia or Zimbabwe. m2m’s main
principle in determining the compensation for
caregivers is that it should be in line with what
is paid to others who do similar work in the
country concerned.
None of the caregivers in case study
organisations in either Zambia or Zimbabwe are
receiving financial support for their caregiving
work. A past caregiver at St Peter’s remarked
that government should acknowledge that ‘a
caregiver is more like a doctor, a nurse or as
well as a midwife, because it involves carrying
out the roles of the above-mentioned, for
example, bathing patients, washing sores
and many more which demands ample time
from a caregiver.’ This, she said, meant that
government should ‘show some kind of
appreciation’ by providing allowances. One
of the past caregivers at Mwazwini felt that
the absence of compensation reflected lack
of acknowledgment of the work done, and
that the caregiver ‘is also just a person’, and
that caregivers also need to take care of their
families.
The Mwazwini coordinator argued persuasively
that the work caregivers were doing was ‘on
behalf of the Ministry of Health’ in that they
were ‘filling the gap’, and they therefore should
be compensated. Caregivers working for FACT
expressed unhappiness that they did not receive
financial allowances outside of reimbursements
for transport expenses. As one commented: ‘It
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is sad to know that village health workers who
are doing the same type of work are paid by the
government yet we do not get anything.’
Across all projects, caregivers expressed a
desire to receive monetary payments. In one
of the Zambian organisations food is ranked
higher than money, but even in this organisation
caregivers would like financial reimbursement
for costs such as transport. Money payments are
wanted by caregivers, but very seldom given by
these organisations.
Unless there is a regular monthly payment,
whether a wage or stipend, caregivers are
unlikely to perceive themselves as receiving
monetary compensation.
on an empty stomach and coming back home
to a house without food. As one caregiver said
when asked which forms of support were most
important: ‘Food is more important because
without eating you can’t do the work.’
The St Peter’s coordinator reported that the
decision to provide food to caregivers was
made after they discovered that some of the
food allocated for delivery was not reaching
the patients. The blanket is provided because
it ‘proved to be cheaper and affordable’ when
compared with money compensation.
FACT caregivers receive preferential treatment
with regard to jobs that may become available at
local clinics. ZNNP+ caregivers receive reading
material from the clinic.
Good practice recommendation
Include financial compensation to
caregivers as a budget item when
planning a programme that includes
secondary caregiving.
Good practice recommendation
If caregivers are to be compensated for
their caregiving with in-kind items, the
best form of support may be food, since
many caregivers are without it, and it
has a positive impact on the work they
undertake.
In-kind compensation
This refers to non-monetary compensation
for the work undertaken by the caregiver,
for example food packs, soap, free medical
treatment, agricultural inputs. By definition,
such support does not include the receipt of
work-related items such as uniforms, bicycles,
raincoats, umbrellas. Our definition thus does
not include some of the suggested elements
of ‘in-kind’ support put forward by VSO and
GEMSA (2010).
Two of the INGOs provide for some sort of
in-kind support, which takes the form of basic
personal necessities for the work or incomegenerating assistance. The Catholic Agency for
Overseas Development (CAFOD) supports
partners to provide food supplements or
agricultural inputs for some of its caregivers and
Save the Children Zimbabwe provides soap.
In Mwazwini caregivers emphasised the need for
compensation in the form of food. Caregivers
complained about setting off to do the work
6
Logistic and material support
This refers to items which will assist the
caregiver to undertake the caregiving work,
such as uniforms, bicycles, raincoats, umbrellas,
gloves, transport allowances. For the most
part, these items cannot rightly be considered
as compensation, as they are tools required to
perform the work effectively. If anything, they
represent a form of reimbursement.
All INGO informants stated that they provide
work materials, generally in the form of
transport equipment, uniforms and care kits
or some of the contents of kits. In this regard,
m2m is an exception in providing access to
cellphones.
While this type of support was not mentioned
at all by one of the Zambian organisations,
caregivers at the other organisation are
provided only with Panadol for patients and
Compensation for caregivers: Good practice recommendations
chitenge materials. The latter were provided
in response to a request from caregivers for
uniforms.
This type of support was mentioned more
frequently by the Zimbabwean organisations.
FACT receive uniforms, T-shirts, bags, trousers
for men and skirts for women, umbrellas,
tennis shoes, soap and Vaseline. The caregivers
are also reimbursed for their transport costs.
Caregivers at FACT view bicycles as important
equipment for caregiving work because they
enable caregivers to visit patients faster and
free them to do income-earning activities as
well as cut travel expenses to submit reports.
ZNNP+ caregivers are meant to receive gloves
from the local clinics but most of the time these
are not available. Island Hospice caregivers also
have uniforms, kits (for needy patients only),
wheelchairs and walking sticks (available for
needy patients).
Good practice recommendation
There is a wide array of means to assist
the work of caregivers. However, some
may be more personally beneficial to
caregivers (eg tennis shoes), others may
assist with both caregiving and other more
personal needs of caregivers (eg bicycles),
while yet others may prioritise the safety
of caregivers (eg gloves). Clear thought
should be put into selecting the forms
this support will take at the programme
planning stage.
Psychosocial/emotional support
All but one of the INGOs reported that
they provide some sort of emotional (or
psychosocial, to use the term more commonly
used in the literature) support for caregivers.
This most often takes the form of regular
meetings, but CAFOD sees some of its social
protection-type support – such as burial society,
savings and lending schemes, and incomegeneration activities – as forming part of
emotional support.
© STOPAIDS and Tearfund 2014
However, while seven of the eight INGO
representatives reported that the caregiving
projects they work with provide various forms
of emotional support to caregivers, this form of
support was barely mentioned by caregivers in
the case study projects.
The focal person at FACT indicated that they
provide emotional support to both secondary
and primary carers. FACT had, at the time
of the interview, recently employed a social
worker who was to be based in Chimanimani,
so as to be close to the caregivers. The sistersin charge of clinics, a church leader who is
a caregiver and cluster supervisors provide
emotional support during debriefing sessions
with caregivers. The focal person said that
emotional support is provided through the
ward-based health technicians of the Ministry
of Health and Child Welfare, National AIDS
Council ward-based focal persons and other
caregivers. However, caregivers reported that
they receive no emotional support.
At Island Hospice, emotional support was
described by the focal person as being provided
through debriefing sessions, supervisory
sessions, group sessions and mentorship
sessions, with carers taught about self-care and
encouraged to take time out for themselves.
Caregivers at Island Hospice were not
interviewed as part of the study, therefore their
perspectives cannot be reflected here.
Good practice recommendation
INGOs should ensure that what is
planned as part of a programme (such
as psychosocial support) is implemented
in practice.
Training and professional recognition
Accredited training that is ongoing and can
put the caregiver on a career pathway was
emphasised throughout the literature reviewed.
This aspect is not, generally speaking, a form of
compensation. It could perhaps be considered
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widespread acknowledgment of the changing
nature of the care needed and thus, presumably,
the skills and knowledge needed by caregivers.
At Mwazwini, caregivers said that they would
like further training, and two, in particular,
referred to the need for guidance on how to
persuade patients who did not want to go for
HIV testing or take anti-retroviral therapy (ART)
because ‘they would be laughed at’. Another
said that without refresher training, ‘Some of
the clients might be more learned than the
caregivers and if it happens that way, the client
will lose hope in listening to you.’
Photo: Alice Dube/Tearfund
Palliative Care caregivers working with FACT in Zimbabwe
receive umbrellas to help them with their work.
compensation if it provides caregivers with
accredited skills and knowledge that can be
used to secure better-paid employment.
All INGO representatives stated that caregivers
receive some sort of training or capacity
building. Several referred to both initial and
follow-up training. In most cases at least some
of the training is certificated. However, it is not
clear to what extent the certificates will enable
the person to seek employment outside of that
particular project, or home-based caregiving
more generally.
With regard to the Zimbabwean case studies,
after initial accredited training, FACT caregivers
receive regular refresher courses informed by
gaps noted by the project coordinator, while
ZNNP+ caregivers receive the National Home
Care training, but there seems to have been
little, if any, refresher training.
There are many similarities across the two
Zambian case study projects, including the
absence of educational requirements for
recruitment and minimal training after the initial
basic introduction. The absence of followup training is particularly worrying given the
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The nature of caregiving has changed with the
availability of ART, and organisations seem to
have responded to this change by expanding
their scope to other chronic conditions.
Caregivers face new tasks, such as monitoring
that patients comply with medication
requirements and encouraging behaviour
change, however it seems that in many cases
they might not have been adequately trained for
these tasks.
Good practice recommendation
Ongoing refresher training needs to be
prioritised in planning and budgeting,
particularly in the current changing
context of care needs.
Other support
Most INGO representatives reported various
other forms of support. CAFOD, Voluntary
Service Overseas (VSO) and Save the Children
Zimbabwe noted exchange visits for learning
purposes. m2m offers a wellness programme.
There were a number of references to support
for income generation in the form of training
and start-up grants. One INGO informant
described caregivers being linked to savings
groups. VSO provides volunteers who support
capacity building. World Vision Zambia supplies
a grinding mill for a group of caregivers if certain
conditions are met.
Compensation for caregivers: Good practice recommendations
In terms of ‘other’ support, informants at case
study organisations mentioned assistance with
income-generating activities. Both Zambian
organisations provide such assistance. However,
it is unclear to what extent these are intended
to support the project and to what extent the
aim is to support the caregivers. The reports
on the success or otherwise of the incomegenerating activities were mixed. The fact
that many caregivers left caregiving to engage
in their own income-generating activities
suggests that the project-based ones were not
enormously successful.
In Zimbabwe, support for income-generating
activities for caregivers and patients was also
mentioned. FACT caregivers received training
on income-generating projects after which they
were asked to write group project proposals
and were given seed money for their projects,
which initially involved goat-rearing and poultry.
One group later started an income savings
and lending project. The amounts received as
seed money ranged from US$250 to US$735.
The livelihoods training was provided by
FACT’s field officers with support from the
Ministry of Agriculture. The Island Hospice
community gardens, for which training and
seeds were provided, supply vegetables (for
sale or consumption) for orphans and other
vulnerable children as well as for the caregivers
themselves.
The reported results of this assistance were
mixed. In some cases organisations recognised
that caregivers’ work on either the group or
individual income-earning required that their
caregiving hours be limited. However, there
was little, if any, mention of the time that the
primarily female caregivers need to spend on
(unpaid) caregiving tasks in their own homes.
In several cases the income-generation projects
seem to have raised suspicion of fraud and
allegations of unfairness. Overall, it seems that
income-generation support is not a quick and
easy fix.
© STOPAIDS and Tearfund 2014
Good practice recommendation
More thought should be put into planning
income-generating assistance if it is to be
given. Where it is given it should include
monitoring that those who benefit from
such programmes are the intended
beneficiaries; and acknowledging that
caregivers must spend time on tasks
other than their secondary caregiving and
income generation.
Support to cared-for
At least four of the eight INGOs describe some
sort of support (other than care) for patients
and their families. In most cases this is provided
only for those considered to be most in need.
Through their partners, CAFOD provides food
for those most in need: energy supplements,
corn/soya blend, maize meal, matemba and
cooking oil. World Vision Zambia provides
school kits for needy children, as well as a link to
livelihoods activities for people living with HIV,
while World Vision Zimbabwe supplies items
from home-based care kits eg Betadine, gloves,
eye ointment, soap, Vaseline, towels. Save the
Children Zimbabwe provides short-term relief
only if the need is dire.
The study findings indicate that this form of
support to patients is important, particularly
the provision of food. According to caregivers
working for Mwazwini, the fact that caregivers
were not able to bring food regularly to their
homes made some patients resist and reject
the caregiving service. The Island Hospice
coordinator said that caregivers are instructed
not to support patients from their own pockets,
but that some caregivers did so in order to
be accepted by the patient or the family.
Considering the economic circumstances of
many caregivers, this is likely to be difficult for
them to do, but is necessary for their work.
Therefore support by caregiving programmes
for the cared-for is important. However, it
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should be balanced with a focus on caregivers,
who are often in circumstances that are not
dissimilar to patients. The coordinator at
Mwazwini said that the donor focus only on
beneficiary (ie patient) livelihoods was ‘wrong’
because caregivers were ‘important’ people in
the community who needed basic necessities
and tools in order to do their work better.
Good practice recommendation
Including support – particularly food – to
the cared-for in caregiving programmes
will benefit patients but also caregivers
who are often in difficult circumstances
themselves. Caregivers will benefit
because they will not have to give food to
the cared-for themselves and they will be
more accepted through the giving of food.
before joining as a caregiver. Some continued
with these activities after joining, while others
stopped because they could not combine both
types of work successfully.
In sum, where caregivers were said to have left
projects, this was often for financial reasons,
such as to have time for income-earning or
to join another project where compensation
was given. As evidenced by the movement
of caregivers from one project to another,
caregivers expressed unhappiness at seeing
others being paid while they were not. The
comparisons were not restricted to caregiving,
but were also made in respect of other
groups of workers, such as domestic workers.
The Zambian policy requires that there be
harmonisation of benefits across organisations
working in a particular area. Such harmonisation
is currently clearly not in place. The motivation
for such harmonisation could be protection of
caregiver interests, but could also be avoidance
of caregivers being able to ‘vote with their feet’
to reject poor support.
Caregiver retention
Both Zambian organisations had caregivers
who had stopped caregiving. For both, the
issue of lack of, or diminished, compensation
emerged as a key reason for caregivers stopping
the work. For example, one of the current
caregivers at St Peter’s said that she had
stopped caregiving for three to four months
because she found a job that helped her provide
for her children. The coordinator at St Peter’s
believed that some monetary compensation,
even if small, was needed to attract back those
caregivers who had left the project.
Mwazwini has also had challenges in retaining
caregivers. One of the caregivers said that
previously there had been as many as 45
caregivers but many had left because ‘akabomba
akabiye kamunda’ (you can’t work when there
is nothing eaten in the stomach). A current
caregiver observed that widows with many
children who were undertaking secondary
caregiving saw that others were making a
success of small businesses and therefore left
caregiving. Some of the Mwazwini caregivers
were engaged in income-earning activities
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Good practice recommendation
Work out ways to facilitate the
combination of caregivers’ income-earning
work and their caregiving work.
Accountability
The study found a mismatch between the
compensation and support that INGOs report
is provided to caregivers and what is found on
the ground. This could be interpreted as raising
questions about accountability. The issue of
accountability of projects to INGOs, and of
INGOs to their own donors, was one of the
issues in which the UK Consortium expressed
interest. It is, however, difficult to pronounce
on accountability without knowing whether
the INGOs and donors prescribed approaches
in respect of compensation when providing
funding and other support to implementing
partners. In the interviews, INGOs tended to
Compensation for caregivers: Good practice recommendations
based labour. Funding has perhaps decreased
over time for HIV and AIDS as a whole,
but has definitely decreased in respect of
caregiving, as funders and governments
channel money to ART (or issues other than
HIV and AIDS) or decrease overall levels of
funding given their own financial constraints. In
some cases this reprioritisation of care funding
reflects the perception that care is no longer
needed in the same way. In other cases it
reflects a shift in focus of major donors such as
PEPFAR and DFID to ‘systems strengthening’
rather than funding of direct delivery.
Photo: Chris Boyd/Tearfund
Caregivers in Malawi are identified through T-shirts, providing
a way for community members to know who they can go to
for support.
say that they did not prescribe. Given the
lack of prescription, one cannot interpret the
mismatch as lack of accountability. INGOs
which do not provide financial support to
projects are also in a weak position in terms of
requiring accountability.
Good practice recommendation
Ensure that what is planned for as part of
a caregiving programme is implemented
by local organisations on the ground. Do
not expect local organisations to take
actions which require resources unless
these resources are made available to
them. Where there are requirements,
discuss these with the organisations and
reach agreement on what is desirable
and possible.
Project financing
This reduction in funding to caregiving
programmes is evidenced in various ways across
case study organisations. At most organisations,
mention is made of how many items were
received by caregivers in previous years,
and how many of these items are no longer
received. At St Peter’s the coordinator said that
caregivers should be given regular refresher
training, but that this had not happened for
some time due to lack of funds.
The reduction in available funds had affected
Mwazwini Home-Based Care in many ways,
including its ability to provide food supplements
to patients. This, in turn, resulted in some
patients stopping their medication as the
medication needed to be accompanied by
adequate food. It was argued that the saving on
food expenses ultimately imposed higher costs,
as patients developed resistance to the first-line
drugs, and had to be put on more expensive
second-line treatment.
Good practice recommendation
A minimum package of support should
include, among core line items, funding
for ongoing refresher training. Where
availability of funds decrease, ensure that
it is not caregivers or patients who must
bear the added burden of a project.
Availability of funding has decreased
markedly. Caregiving was to some extent
always the ‘forgotten pillar’ in terms of
funding, a factor which resulted in the
widespread use of voluntary community-
© STOPAIDS and Tearfund 2014
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Email: info@stopaids.org.uk
Web: www.stopaids.org.uk
Tearfund is a Christian relief and development
agency building a global network of local
churches to help eradicate poverty.
Tearfund
100 Church Road
Teddington
TW11 8QE
UK
Tel: +44 (0)20 8977 9144
Email: publications@tearfund.org
Web: www.tearfund.org
A company limited by guarantee.
Registered Charity No 265464 (England and Wales)
Registered Charity No SC037624 (Scotland)
Company Number: 2589198
Charity Number: 1113204
To read the full research report, please
either visit: tilz.tearfund.org
or contact: shannon.thomson@tearfund.org
Design: Wingfinger
Cover photo: Chris Boyd/Tearfund
Home-based caregivers support family members
who are working hard to care for their relatives.
© STOPAIDS and Tearfund 2014