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.
Campbell C et al. A ‘good hospital’: nurse and patient perceptions of good clinical care for HIV-positive people on antiretroviral treatment in rural Zimbabwe - a mixed-methods qualitative study. Int J Nurs Stud, 2010. doi:10.1016/j.ijnurstu.2010.07.019