HIV/AIDS care encompasses a range of different programmes, including voluntary counselling and testing (VCT), prevention of mother to child transmission (PMTCT), health education, nutrition and psycho-social support, treatment of opportunistic infections and staging. Yet, since government’s decision to introduce anti-retroviral therapy in public health facilities, research and debate has focused almost exclusively on the delivery of ARVs.
Most of these essential HIV/AIDS services are rendered or supported by nurses at primary care facilities (clinics or community health centres). Yet primary care nursing is in danger of being seriously undermined in South Africa (and elsewhere in Africa) by an accelerating brain drain of nurses, decreasing productivity, lack of skills, and overwhelming anecdotal evidence of burnout and low morale amongst nursing staff.
Around 30 nurses and managers interviewed in Cape Town primary care facilities shared their insights, experiences and how they cope with the impact of the epidemic. Quotes extracted from the interviews speak graphically of their experiences.
Increasing stress levels
By far the most dominant theme in all interviews was the dramatic increase in stress and anxiety that has transformed their working life with the advent of HIV/AIDS, presenting as fear of injury and disclosure, the impact of stress on their family life, feelings of hopelessness and feelings of guilt.
While the fear of infection lives with nurses continuously, most were clear that, if given a choice, they would not test, nor did they want to disclose their status.
‘I will tell my family but the staff, no’.
‘You won’t be productive, that is what I do not like, I am on contract, and my boss will fire me’.
‘If I find out that I am HIV+, what’s going to happen to my family, they will say I got it from work, you know males do not accept the blame, I am better off not knowing’.
Occupational exposure contributes greatly to tensions within relationships, fuelled by fear and stigma.
‘It once happened [a needle prick injury] and my husband say please wash your hands before you touch us’.
‘It’s very hard but, as it ended up being a bedroom problem. I starved in the bedroom as my husband because of shock and fear I assume, was afraid to involve with me in the sexual relationship until I finished the whole process’.
‘When I told my daughter, she said again mama, you must stay away from the HIV+ people?’
Nurses spoke about an often overwhelming feeling of hopelessness in the face of the sheer size of the challenge confronting them. Many said that they had chosen the nursing profession to heal whereas now they had to watch clients die without being able to help or at least alleviate suffering.
‘To start with the HIV/AIDS has increased the feeling of hopelessness, you find that you are unable to help the client thinking that there ‘s a lot of job to be done’.
‘When thinking about the situation we are facing at work we just feel hopeless and helpless because we think that at the end of the day it may be you in that situation, and you’ll look like that client, and there is no cure for HIV/AIDS’
‘If you test more than three clients, and they all become positive same day, with the fourth one you are dead alive’.
Many nurses expressed feelings of guilt, which related to issues if confidentiality and stigma.
‘When you work in a place that you are living in, to see people that are being tested and they belong to your church, and results are positive, it’s not nice’.
‘My sister’s boyfriend died of AIDS, here at the clinic, my sister is not aware, and I have to keep quiet, each time I see an AIDS client becoming thinner and thinner, I just say soon I’ll be seeing my mother’s child in this position’.
‘Another problem we have is the problem of teenagers who are unable to tell their parents that they are HIV positive, some will tell you that I can’t tell my mother, she has heart attack and my father is suffering from stroke so if I can tell them they will die, sometimes you know their parents’.
A recurring theme was the fact that nurses increasingly find themselves engaged in extra-ordinary activities in the absence of other kinds of support services. Below are a few examples of such activities.
‘When they die some of their members come to the clinic to tell us that there is no money to do the funeral for the person and there is nothing we can do with the corpse in the trolley’.
‘For the funerals we are trying by all means to look for cheaper undertakers because you can find out that there is no one working in that house altogether, sometimes the members of the family hide themselves because they do not want to take the responsibility’.
‘The patient will tell you that he’s hungry and the tablets are making him feel hungry and you don’t know what you are going to give him, sometimes I even took money out of my pocket and give him so that he will be able to go and buy bread’.
‘One woman came to me in the dressing room she told me that she has nothing to eat at home, I gave her R10.00 she is my client, I knew her husband was my client too and he died’.
‘We even bring clothes from home for the babies, we end up being social workers’.
Quality of care ‘We used to go out on a daily basis and visit people in their homes (… ) it’s much more of a sausage machine now, one client in, one client out, and the more you can do in a day the better, which is sad.’
Important aspects of patient care, from promotive services and in particular health education to follow-up and support are increasingly being ‘crowded out’ by the ever-increasing volume of curative services.
‘We feel frustrated because we can’t take that task of health education, We can’t because we are busy with sick babies and adults, so that part of our duty has fallen off’
Nurses see clients defaulting because there was no capacity for sufficient follow-up:
‘Even the counselling that is done we do not do any follow up, it’s just it then nothing follows’
‘We see a lot of clients, we tell them they must come back when they come we are not there for them we are busy’;
‘Some come to the clinic not because they are sick, but for support, we do not give them any time for that’.
Most nurses were clear that in under these circumstances quality of care was dramatically declining.
‘We do not look at quality anymore its quantity, the managers want high statistics, so we rush numbers’.
Nurses were quite self-critical about their relations with staff, admitting that they are at times rude to clients because of stresses of the working environment.
‘Like any human being, you get tired, and become aggressive, we are like any human being, faced with dying people that you can not help, it’s frustrating, and people say we are rude, that’s it’.
‘If I feel I can’t cope anymore with the workload, I just withdraw myself’.
‘It has changed, I am even down spiritually, you don’t feel nice too, if all clients if all clients tested on that day are positive, your attitude changes automatically, you become down, it’s haunting, you can’t be nice as you were before’.
Lack of appropriate skills
Most nurses had an acute sense that they lack appropriate skills to deal effectively with HIV/AIDS clients.
‘I never went for training on counselling, I question my ability, I need those counselling skills’.
‘I think it should be the basic thing to start with in nursing, to go through HIV/AIDS counselling’.
‘We need the counselling skills, clients think you know everything concerning this disease and you do not know a thing’.
While these are the voices of only a few nurses, experience tells us that they speak for many others in the country. Ignoring these voices presents a serious danger to primary health care in most under-serviced areas in South Africa.
Critical Health Perspectives is a publication of the Peoples Health Movement-South Africa (PHM-SA). However, the views expressed here do not necessarily reflect the view of all those who have identified with PHM-SA. For further information see: http:///www.phmovement.org