People with
HIV can receive excellent care and adhere well to antiretroviral treatment
despite staff and resource shortages, but the attitudes and performance of
nurses and patients’ experiences of the clinic are often crucial in determining
how satisfied patients are with the care they receive – and whether they keep
coming back to the clinic, a study conducted in Zimbabwe shows.
Catherine
Campbell and colleagues reported the results of a qualitative study of the
perceptions of nurses and their patients on antiretroviral treatment at three
sites in rural Zimbabwe,
published in the online edition of International
Journal of Nursing Studies.
Both nurses
and patients stressed the importance of nurse kindness, understanding,
confidentiality, the ability to listen, acceptance of HIV like any other disease,
and adherence.
Different
expectations and priorities presented challenges to both nurses and patients. Nurses,
for example, often failed to notice how distressing and difficult long waiting times
and frequent hospital visits were for patients.
A significant
source of frustration for both patients and staff was the unpredictability of
key services including payment for services, time to wait until being seen, and
the availability of drugs and/or doctor’s services.
With the
increasing availability and affordability of antiretroviral treatment in
sub-Saharan Africa, HIV can be viewed as a chronic, manageable condition rather
than one of acute and predominantly palliative care.
The World
Health Organization recommends the delivery of antiretroviral treatment through
health centres as part of a package of care that includes cotrimoxazole
prophylaxis, counselling, the management of opportunistic infections and other
co-morbidities, and nutritional support.
Following
initiation of ART by a doctor, follow-up care is given primarily by nurses, who
are increasingly taking on many of the responsibilities previously undertaken
by doctors (task shifting).
The authors
stress that the rollout of ART provides both opportunities and challenges for
healthcare workers, “heralding a new era of HIV nursing in Africa”.
The availability of ART means that nurses will develop a different kind of
relationship with patients interacting more frequently over a long period of
time.
To make the
most of these positive opportunities requires, according to the authors, a
greater understanding of what these changes bring, in particular in terms of
how best to support nurses and patients.
Their
case study looked at how patients and nurses viewed the changes and challenges
brought about by ART. Improvement of care in resource-poor settings requires an
understanding of what nurses and patients consider to be good clinical care,
the authors note. Looking at the differences in their perceptions is critical
to improving care and so contributing to best practices in HIV nursing.
Research,
involving interviews and focus groups as well as 100 hours of observation of
treatment settings, was conducted by four fieldworkers over a period of six
weeks in 2009. The study took place in rural Zimbabwe
at three sites providing free antiretrovirals:
a Catholic clinic
an Anglican
hospital
a government hospital.
The adult HIV infection rate is
approximately 20%. Specifics were
excluded to protect the identity of the participants.
A total of
53 patients on ART and 40 carers of children on ART were interviewed and
participated in focus groups. During focus groups patients were invited to
role-play a ‘good day at the clinic’ and a ‘bad day at the clinic’.
Twenty-five
health staff (primarily nurses but including counsellors, pharmacists and a
clerk) were interviewed. Because of staff shortages, a focus group was only
possible at the Anglican hospital.
The
overwhelming response by patients and nurses was extremely positive.
High
quality of care was the norm in a setting where chronic stress is a given because
of critical staff, drugs and/or equipment shortages, lack of respect between
the different health cadres and little or no accountability. These findings,
the authors stress, are contrary to most research concerns that focus on non-adherence
and burn-out. This suggests improved care needs to understand and address
differing nurse and patient needs and priorities, they add.
The
findings were grouped into five thematic areas:
Ideal interaction between nurses and
patients
Obedience versus adherence
Control/distribution of
antiretrovirals
HIV clinic availability
‘Grey areas’ surrounding payments
and access to service.
At all
sites both patients and nurses gave critical importance to kindness,
confidentiality and not being treated differently (stigmatised). Both patients
and nurses said listening was key to good clinical care.
Both nurses
and patients recognised the importance of adherence with patients acknowledging
nurses' instructions as critical.
However, at
times the boundary between adherence and obedience was blurred. Nurses gave orders
to patients for no other reason than to show their power over the patients; a
way of coping with the stresses of working in a resource-limited and often
unpredictable setting, note the authors. For example, a nurse might say “Everyone
sit down, I won’t serve anyone standing up”.
Efforts to
change healthcare worker behaviour in such settings are limited if root causes
are not addressed, the authors stress. Yet, in this setting compassionate care
was the norm. Understanding what makes this possible in such an environment is
critical to help “support future efforts to foster positive staff-patient
relationships in resource-poor settings”.
The area of
greatest misunderstandings related to the organisation of the ART programme.
Patients were confident in their ability to adhere; they wanted fewer visits allowing
for receipt of several months of ARVs at a time, they struggled to pay the one or
two dollar consultation fee, and they wanted shorter wait times. The visits usually
exhausted their already limited financial and physical resources.
Patients
believed a good nurse or pharmacist is one who prescribed several months of ARVs
at a time and those who gave out small amounts were seen as bad. The patients
did not consider this as the nurse’s desire to closely monitor ART, nor to ARVs
often being in short supply. Nurses, in turn, failed to recognise these as sources
of stress to the patient.
The authors
suggest that finding ways to speed up patient visits on ART review (check-up
and refill) days would greatly relieve the considerable stress experienced by
patients. They recommend, for example, reviewing ART on more than one or two
days a week or increasing staff on high-capacity days.
The authors
note almost every patient is poor and in need of nurse or doctor assistance, so
staff will be at odds as to whom to prioritise - on top of which will be the pressures to help relatives and friends.
Dealing with conflicting demands is part of their work routine.
The authors
note their findings also suggest that religious faith offers a sense of solidarity
requiring further study.
Noting that
their study was undertaken when ART had only been introduced into their sites a
year previously “limits their understanding of the longer-term evolution of
patient-provider relationships in the era of ART”. A follow-up study in 2012 is
planned to review these initial findings.