Compensation for caregivers:
Good practice recommendations
recommendations SUMMARY
By: Debbie Budlender and Nina HunterEdited by: Shannon Thomson
This recommendations summary highlights good practice recommendations drawn from the
findings of a composite research report entitled Compensation to Caregivers: An exploratory
study on roles and attitudes in respect of caregiver support. The recommendations outlined
in this summary provide guidance for NGOs, donors, and development agencies in design,
implementation and funding of HIV care and support programming.
The study was commissioned by Tearfund in
partner­ship with 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 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 responded to perceived increasing
interest, including among international development
agencies such as the United Nations agencies, about
care work – and particularly unpaid care work.
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 anti-retroviral 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.
Availability of funding has decreased markedly for
HIV care and support. The limited past support and
compensation previously available for caregivers
has been further curtailed. Despite all these
constraints and limited (if any) compensation,
many caregivers continued with their tasks gaining
pleasure from improving the well-being of fellow
community members. Such perseverance was most
likely where caregivers had personal reasons for
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
l A multiplicity of types of caregivers and ongoing
expansion of understanding of what ‘care’
involves.
Good practice recommendations
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.
Financial compensation
Include financial compensation to caregivers as
a budget item when planning a programme that
includes secondary caregiving.
In-kind compensation
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 food, and it has a positive impact on the
work they undertake.
Logistic and material support
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
INGOs should ensure that what is planned as part
of a programme (such as psychosocial support) is
implemented in practice.
Training and professional recognition
Ongoing refresher training needs to be prioritised
in planning and budgeting, particularly in the
current changing context of care needs.
Income-generating support
More thought should be put into planning incomegenerating 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
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.
Caregiver retention
Work out ways to facilitate the combination
of caregivers’ income-earning work and their
caregiving work.
Accountability
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
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.
STOPAIDS is the network of UK agencies working since 1986 to
promote an effective global response to HIV and AIDS.
Tel: +44 (0)20 7324 4780 Web: www.stopaids.org.uk
Tearfund is a Christian relief and development agency building a
global network of local churches to help eradicate poverty.
Tel: +44 (0)20 8977 9144 Web: www.tearfund.org
To read the full research report, please visit tilz.tearfund.org or contact shannon.thomson@tearfund.org
Design: Wingfinger © STOPAIDS and Tearfund 2014