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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

A ‘good hospital’: Nurse and patient perceptions of good clinical care for HIV-positive people on... International Journal of Nursing Studies 48 (2011) 175–183 Contents lists available at ScienceDirect International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns 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 a, a b b,c Catherine Campbell *, Kerry Scott , Claudius Madanhire , Constance Nyamukapa , b,c Simon Gregson Health, Community and Development, Institute of Social Psychology, London School of Economics, London, United Kingdom Manicaland HIV/STD Prevention Project, Biomedical Research and Training Institute (BRTI), Harare, Zimbabwe Department of Infectious Disease Epidemiology, Imperial College, London, United Kingdom AR TI CLE I NFO AB ST RACT Background: Antiretroviral treatment for HIV is gradually being made available across sub- Article history: Saharan Africa. With antiretroviral treatment, HIV can be approached as a chronic, Received 16 April 2010 Received in revised form 16 July 2010 manageable condition rather than a shorter-term issue of palliative care. This treatment Accepted 26 July 2010 involves repeated interaction between health staff and patients for ongoing check-ups and prescription refills. Keywords: Objective: This study aimed to understand patient and healthcare staff perceptions of good Antiretroviral treatment clinical antiretroviral treatment care. HIV/AIDS Design: Over 100 h of ethnographic observation at healthcare sites; interviews and focus Nurse–patient interaction groups with 25 healthcentre workers (mostly nurses), 53 HIV-positive adults taking ARVs Qualitative research and 40 carers of children on ART. The data were analyzed using thematic content analysis. Resource-poor healthcare centres Setting: Three healthcare sites providing free antiretroviral drugs in rural Zimbabwe, Zimbabwe where the adult HIV infection rate is approximately 20%. Results: Contrary to reports of poor antiretroviral treatment adherence and task-oriented rather than patient-oriented nursing, our study found great patient commitment to adherence, outstanding nurse dedication and a pervasive sense of hope about coping with HIV. Within this context however there were some situations where patients and nurses had different expectations of the medical encounter, leading to stress and dissatisfaction. Patients and staff both emphasized the importance of nurse kindness, understanding, confidentiality and acceptance (i.e. treating HIV patients ‘like normal’) and patient adherence to medical directions. However, nurses at times overlooked the negative effects of long wait times and frequent hospital visits. Further, nurses sometimes conflated medical adherence with general patient obedience in all aspects of the nurse–patient relationships. Patients and staff were frustrated by the ambiguity and unpredictability surrounding key elements of hospital visits such as how much patients had to pay for service, how long it would take to be served, and whether drugs or the doctor’s services would be available. 2010 Elsevier Ltd. All rights reserved. What is already known about the topic? * Corresponding author at: Institute of Social Psychology, London Antiretroviral treatment (ART) is increasingly accessible School of Economics, St Clements Building, Houghton Street, London to HIV-positive people in sub-Saharan Africa, primarily WC2A 2AE, United Kingdom. E-mail address: [email protected] (C. Campbell). through resource-poor healthcare centres. 0020-7489/$ – see front matter  2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2010.07.019 176 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 ART requires long-term nurse–patient interaction for throughout sub-Saharan Africa has been found to be high monitoring, adherence support and drug refill. (Amberbir et al., 2008; Bisson et al., 2008; Orrell et al., 2003); a recent study of Ugandan and Zimbabwean ART patients found that good adherence increased from 87%, What this paper adds four weeks after ART initiation to 94% at 48 weeks, but only half the patients achieved good adherence at every visit in Contrary to concerns about non-adherence issues and the first year (Muyingo et al., 2008). high levels of nurse burn out, nurses and ART patients in Making ART accessible to the general population in sub- rural Zimbabwe were positive about adherence levels Saharan Africa is a new phenomenon presenting new and primarily pleased with the quality of care provided, challenges. With treatment, HIV can be considered a despite staff and resource shortages. chronic disease requiring ongoing hospital visits and a Nurse–patient interactions surrounding ART nonetheless carefully managed drug regime rather than a terminal present challenges to both parties that stem from illness requiring palliative care. A patient found HIV differing struggles and priorities. positive today, with access to ART, can expect to live 10 These findings provide insights in the ongoing develop- years or more (Walensky et al., 2009). With frequent health ment of best practices in HIV nursing, with application to centre visits to renew prescriptions, ongoing interactions the general challenges of introducing new treatment with healthcare workers are becoming a routine feature of protocols in resource-poor areas in relation to any health many Africans’ lives. condition. ART has renewed nurses’ sense of hope but also increased their workloads (Stein et al., 2007). Overworked 1. Introduction nurses who lack sufficient material and emotional support often fall back on task- rather than patient-oriented care AIDS is the biggest killer in sub-Saharan Africa (WHO, (Fassin, 2008; Manongi et al., 2009). In the paper ‘Why do 2008a). In 2008 it accounted for 1.4 million deaths – 14.7% nurses abuse patients? Reflections from South African of total deaths – in the region (UNAIDS/WHO, 2009). HIV is obstetric services’ Jewkes, Abrahams and Mvo report that highest among economically productive adults of child- the frequent and often violent abuse of patients can be bearing age and has an enormous impact on families, caused by a complex interplay of concerns including communities, and regional economies. ART is gradually organizational issues (such as a lack of nurse account- being made affordable and accessible to HIV infected ability), professional insecurities, a perceived need to people across the continent predominantly through the assert control over the environment and sanctioning of the provision of free or highly subsidized antiretroviral (ARV) use of coercive and punitive measures to do so, and an drugs in under-resourced medical settings (WHO, 2008b). underpinning ideology of patient inferiority compared to ART is to be delivered through health centres as part of a the nurses’ status as middle-class professionals (1998, p. package of care that includes co-trimoxazole prophylaxis, 1781). Lewin and Green’s 2009 paper ‘Ritual and the counselling, the management of opportunistic infections organization of care in primary care clinics in Cape Town, and comorbidities, and nutritional support. Following South Africa’ reports similarly fraught, although less several counselling sessions, patients are initiated onto overtly violent, patient–provider relationships. They found ART by a doctor. Nurses provide the majority of subsequent that healthcare providers used rituals (directly observed support through meeting with patients at the clinic on a treatment of tuberculosis and daily prayer) to reinforce regular basis. asymmetrical relations of power and to strengthen ART roll-out presents new opportunities and challenges conventional modes of provider–patient interaction, char- for healthcare providers, heralding a new era of HIV acterized by rigid hierarchy. Such problematic relation- nursing in Africa. ART enables different types of relation- ships have presented significant barriers to the roll-out of ships between nurses and patients, characterized by new healthcare regimes in Africa, such as TB treatment regular interactions over many years for check-ups and (Lewin et al., 2005) and mental healthcare (Petersen, refills. Optimising the positive opportunities presented by 1999), and could be a potential barrier to ART roll-out. ARVs requires a greater understanding of the changes they There has been little examination of the needs, bring and the supports required by patients and nurses. We expectations and interactions of ART patients and the examine these issues through a case study of HIV-positive nurses who care for them. Understanding what patients people receiving free ARVs through three healthcare and nurses perceive to be good ART-related clinical care centres in rural Zimbabwe. This paper explores how and exploring differences in these perceptions is a vital patients and nurses view the changes and challenges component of improving HIV care in poor countries. Most brought about by ART. studies on patient–health worker interaction in the field of Zimbabwe was one of the first African countries to HIV focus on HIV/AIDS care before ARVs were widely show a declining HIV rate (UNAIDS/WHO, 2005) with the available (e.g. Ehlers, 2006; Kohi and Horrocks, 1994). The adult prevalence rate falling from 25% in 1997 to 13.7% in studies that do examine clinical interactions surrounding 2009 (ZMoHCW, 2009). Despite major challenges in the ART are generally from rich countries (e.g. Wood et al., early 2000s, ARVs have become increasingly accessible in 2003) where ART has been accessible for significantly Zimbabwe and by the end of 2009 the government longer than in developing countries such as Zimbabwe. succeeded in getting over 218,000 people on ART, 56% of Research on ART in poor countries is very new and tends to those needing treatment (UNAIDS, 2010). Adherence focus primarily on issues of patient non-adherence (Rosen C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 177 Table 1 et al., 2007; Wringe et al., 2009) or explore the views of Summary of study participants. either health workers or HIV patients, rather than both (e.g. Wouters et al., 2008; Stein et al., 2007). Participants Interviews FGD Improving the clinical experiences for patients and Staff 25 18 1 health staff in resource-poor environments is vital to Carers of children 40 21 3 Patients 53 19 4 support the ongoing response to HIV. Good quality Total 118 58 8 patient–health worker relationships promote adherence (Deyo and Inui, 1980), with recent studies extending this finding to ART adherence (Roberts, 2002). Beyond adher- administrators); the Anglican hospital had a clinical ence, the importance of positive clinical experiences, officer, about 50 nurses and about 30 additional staff. including positive interactions with health workers, is At both sites, the doctor/clinical officer also visited smaller closely linked to patient willingness to pay for services clinics and attended meetings and workshops in the cities. (McPake, 1993) and nurse job satisfaction (Kangas et al., The bulk of patient care was provided by nurses and 1999). counsellors. At the government hospital, the doctor had so It is less clear what factors lead to positive clinical many commitments outside the hospital that he was only experiences for patients and how more positive patient– able to treat hospital out-patients once every two weeks. health worker interactions can be fostered, particularly for The Catholic clinic was visited monthly by a doctor and patients on ART in resource-poor settings. Efforts to improve was otherwise staffed by nurses. the nurse–patient interface frequently fail. For example, nurses in Tanzania recognized they were often rough with 2.2. Research design patients and provided slow service but suggested these problems stemed from complex issues surrounding low job The research involved interviews and focus groups with satisfaction and resisted simplistic sensitivity training patients, carers of children on ART and healthcare (Manongi et al., 2009). Manongi et al.’s study highlights providers (see Table 1), as well as ethnographic observa- the need for further research into the human dynamics of tion of treatment settings. clinical service delivery and how clashing expectations and Interviews and focus groups were conducted with a total needs of staff and patients can be addressed. To this end, our of 53 ARV users (19 one-hour interviews with people on paper will highlight how nurses and patients often have ARVs, and four two-to-three-hour focus groups with eight to different goals in the medical encounter, leading to stress 10 participants) and 40 carers of children on ART (21 and misunderstanding. interviews and three focus groups). Since carers of children on ART must attend the clinic for their child’s check-ups and prescription refills they have similar clinical experiences as 2. Methods adult ART patients. Most participants were recruited from Our qualitative research involved collaboration openly HIV-positive community members known to the between two British universities and a Zimbabwean public researchers through previous HIV/AIDS research. Others health institute. Research was conducted by four experi- were approached as they visited hospital or clinic sites. A enced fieldworkers over six weeks in 2009 in rural few participants approached the researchers asking to be Zimbabwe, focusing on three sites: a Catholic clinic, an interviewed because they had heard about the project. Anglican hospital and a government hospital. Details of the Researchers’ requests to interview a person on ART were region and health settings have been anonymised to only refused in one case, by someone who cited time protect the identity of participants. limitations. Topic guides explored changing perceptions of HIV, social support and ways of coping with HIV and ART, 2.1. Context issues surrounding treatment adherence, andexperiences at the healthcare centre. During focus groups with patients, The HIV rate in the region is approximately 20% participants were invited to perform a role-play of ‘a good (Gregson et al., 2006). Residents of the region are primarily dayat the clinic’ and‘a bad dayat the clinic’. These role-plays subsistence farmers. Most live in rural homesteads revealed a great deal about what makes clinical experiences (compounds with several mud and thatch houses, a pit- positive or negative for ART patients. latrine and animal pens), often without electricity. Large Interviews and focus groups were conducted with a commercial farming estates in the region employ a total of 25 health staff (nurses, HIV counsellors, pharma- significant portion of the local population. Many families cists and a clerk) at the three hospital/clinic sites, and one have members working in major cities, some of whom focus group was held at the Anglican hospital. A focus send money back to the rural areas. Poverty is a major group at the other two sites was not possible due to staff challenge and many local people receive food aid from shortages. Staff members had often been born in the region international organizations. or had moved there through marriage, sharing a common All three health centres studied had infrequent electricity. The Catholic clinic relied on water from a nearby hand pump while the other two had running water, A clinical officer is healthcare worker who is trained for three years albeit irregularly. The government hospital had one staff and received a diploma in community health, surgery and community doctor, almost 40 nurses and approximately 40 additional medicine. Clinical officers, unlike nurses, are licensed to prescribe staff (nurse aids, counsellors, pharmacists, cleaners and medicine and initiate ART in Zimbabwe. 178 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 identity with patients. Researchers received permission to happy to have access to free life saving drugs. Many spoke conduct the research from each health centre’s doctor or positively about the healthcare staff, the changes in their nurse-in-charge. Staff members were then approached lives since beginning ARVs and their adherence. individually to participate; all agreed. To elicit information Against this positive background, there were none- about challenges and positive elements of working with theless challenges and difficulties, especially surrounding HIV/AIDS patients and issues of clinic access and treatment in-clinic experiences and interactions. Findings on patient adherence, nurses were asked about their views of ‘good’ and staff perceptions of good care were for the most part and ‘bad’ patients, sources of frustration and support in consistent between the health centres and are thus their lives and their perceptions of proper clinical care. presented together; cases where significant differences Over 100 h of ethnographic observation were con- arose are specified. One note on site differences concerns ducted at the health centres, observing interactions as HIV the role of religion in the clinic. Some patients reported patients waited for the doctor, paid hospital fees, visited finding the religious atmosphere enriching to their the pharmacy, and waited for nurses to review their experience, as an ART patient explains: progress on ART and prescribe refills of their ARVs. There are times when the nurses come and greet Researchers did not observe private interactions between everybody and invite us into a room. In that room we patients and staff. Observation focused on hospital activity, pray together...after that we will get served in a very including interactions between patients and staff and the friendly fashion (Patient, Anglican hospital, focus group arrangement of people in hospital spaces. Extensive (FG)) detailed notes were taken by the researchers throughout the hours of observation, recording what occurred (and Staff at each site, however, generally favoured their own when), how people were organized within the clinic space type of institution. Nurses at the Christian sites felt and comments made about the experience. These notes patients preferred religious-based care. Government hos- were included in the body of text data (along with focus pital staff said secular care was better because it was free group and interview transcripts) for analysis. from church-related regulations. Data were collected by three Shona-speaking fieldwor- kers and a fourth researcher working with an interpreter. It is better here because the church can provide spiritual counselling, which does not happen in government All audio files were translated into English and transcribed by trained researchers. To thank the informants, focus hospitals. (Nurse, Anglican clinic, interview) group participants were given soap, and interviewees were I prefer working at a government hospital because the given a t-shirt. church hospital has too many church imposed regula- tions ... here we only follow government regulations. 2.3. Thematic analysis (Nurse, government hospital, interview) The data were analyzed using thematic content analysis Whilst staff seemed to favour their own type of (Flick, 2006). Thematic network analysis is a process of institution, many patients praised the encouragement encoding qualitative information to find, record and and camaraderie fostered by church-based clinics. interpret patterns in ‘raw’ text (in this case transcripts of interviews and focus groups and ethnographic notes 3.1. Ideal interactions between nurses and patients taken by researchers). Two researchers, working indepen- dently, carefully read and re-read the texts to find themes, At all sites, patients and nurses spoke of the importance called coding units, which describe and organize observa- of kindness, understanding, confidentiality and stigma tions, or interpret aspects of the phenomenon (i.e. nurse– reduction. Basic friendliness came up repeatedly, with patient interactions and conceptions of ‘good clinical patients and nurses showing how a greeting from a nurse care’). The researchers then grouped codes into larger or an expression of gratitude from a patient was vital to themes and compared their findings to ensure reliability. positive clinical interactions. Beyond the frequently These larger themes were finally grouped into five central observed friendly greetings, patients and staff commented themes, which were: ideal interactions between nurses on the importance of these interactions: and patients, obedience vs. adherence, control of ARV pills, We see the patients every month and serving them is a HIV clinic availability and ‘grey areas.’ These five themes pleasure because they are always cheerful and they ask provide the sub sections for the findings reported below. questions when they do not understand. They bring us bananas and whatever they have because we have built 3. Findings that relationship with them.. . just yesterday there is a guy who brought me some potato chips. (Pharmacist, Patients and nurses were overwhelmingly positive about government hospital, interview) ART and associated services. Many friendly staff–patients interactionswereobserved.Healthcarestaff expressed great Both nurses and patients said listening was vital to good satisfaction at seeing patients improve and were extremely clinical care: positive about adherence rates. They were also confident about the quality of their counselling services, often We listen to people’s personal problems because HIV is referring to its effectiveness in helping patients come to more than a medical condition (Nurse, Anglican terms with the challenges of HIV and ART. Patients were hospital, interview) C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 179 When they come here apart from getting their medication and accessing food to eat with drugs). The treatments they also want to be listened to, so we try importance of obeying counsellors’ and nurses’ directions to give them a chance to say what they want (Nurse, around taking ARVs was emphasized by both patients and government hospital, interview) health staff. However, the line between adherence to medical guidance regarding taking ARTs, and general I really appreciate their kindness and they always try to obedience to nurses was sometimes blurred. Patient listen when we have issues. (Patient, Anglican hospital, deference to nurses on medical issues and the assertiveness interview) of nurses on these same issues were appreciated by both parties. However, sometimes nurses appeared to require Patients expressed dissatisfaction when nurses did not deference for its own sake, as a way of exerting authority or appear to listen to them: affirming their importance and superiority to patients, rather than for medical reasons. Sometimes the nurse might just tell the patient to go on Hospital staff were occasionally observed to make bed rest without even listening to what the patient has seemingly arbitrary demands that patients line up, stand to say (Patient, Anglican hospital, FG) or sit. Patients also commented on the difficulty of this type of interaction: If they ask what you are suffering from, and they think you are not a good patient, some nurses will not even ... He will be shouting different kind of instructions for listen to what I am trying to tell them. They will just go example ‘‘make sure you are in line’’ and ‘‘may everyone ahead and write what they think on my card (Patient, sit down, I won’t serve anyone standing up’’. The government hospital, FG) benches will be full so some will sit on the floor...if you try to complain he might even shout at you (Patient, Patients appreciated staff taking an interest in their lives and getting to know them over time. Nurses similarly government hospital, FG) emphasized that their main source of motivation was Power inequalities between patients and healthcare seeing patients improve over time and developing positive staff are often enacted and reinforced through the control relationships with them. Nurses recognized the impor- of patient movement in hospital spaces (Jewkes et al., tance of being understanding about the difficult circum- 1998). Telling a patient to sit down can be a kind act or, stances that many HIV patients were dealing with. One conversely, a means to display gratuitous control. Some nurse explains her compassionate approach to patients patients referred to instances where they had felt who defaulted on appointments: disempowered by displays of power by health staff: Suppose a patient has missed the review date. The A ‘bad nurse’ may come at the bench and shout at those reasons that they give for missing it makes you reverse sitting there, saying: ‘You think I’m the one who caused your initial decision to feel frustrated or angry with you to get sick?’ and ‘You want to be helped?’ You just them. One will tell you they couldn’t get transport, or keep quiet but you won’t feel free (Patient, Catholic they could not get the money to come, and maybe today clinic, interview) they have borrowed money to be able to attend. For me to be dissatisfied with such a patient would mean that I 3.3. Conflicting perceptions surrounding how and when to was not doing justice to them. It’s often their life access ART situations that cause their behaviour. (Nurse, Anglican hospital, FG) The organization of ART programs served as the key area of misunderstanding between health workers and Almost all nurses said that maintaining confidentiality patients, and a key source of patient stress. When in good about patients’ HIV status was a core component of good health, most patients sought to attend the clinic as seldom nursing practice, expressing satisfaction with their and as possible for ARV refills and check-ups, and all wanted to their colleagues’ ability to achieve this. In the face of high receive reasonably prompt care during these visits. levels of HIV/AIDS stigma in the region, patients appre- However the ART programs in this region usually require ciated nurses treating them ‘normally’—like patients with patients to come for monthly ARV refills, with all ART different ailments. Handshakes featured prominently in patients coming on specific days, leading to bottlenecks accounts of positive nurse–patient relationships. Shaking and slow care. The healthcare staff have reasons for this hands is a culturally accepted greeting that enables nurses arrangement that are sometimes not understood or valued to show they are not afraid of touching HIV-positive by patients; likewise it appears that the negative effects on patients. patients of frequent, long visits are not always fully appreciated by staff. Conflicting expectations and desires 3.2. Adherence versus obedience surrounding monthly ARV drug refills and HIV clinic days are discussed in turn below. Nurses and patients agreed that good clinical care included providing counselling and a supportive environ- 3.3.1. Monthly ARV refills ment to help patients develop optimal adherence strategies. Patients and health staff had different perceptions of Adherence could be undermined by misunderstandings good care regarding how often patients should come to the about drugs, side effects, and the practical challenges of hospital to report to nurses and get their next instalment of taking ARVs correctly (including remembering to take 180 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 pills. Patients generally felt healthy and confident about One day we were discussing among ourselves after we their capacity to adhere. By contrast, nurses anticipated were just given two months supply of ARVs, so we were negative side effects and adherence problems, leading very happy about it saying, these nurses have been good them to schedule frequent visits to monitor patient to us. (Patient, Catholic clinic, FG) adherence and well-being. Most patients wanted several months’ supply of ARVs at a time, in a context where Patient 1: The nurses don’t agree to it [giving several people often lived far from health centres and lacked months’ supply at once]. They only provide two months money for transport. In addition, patients often battled to supply for people who will be travelling away for a long pay a one or two dollar consulting fee each time they time, because they say they need to see us regularly visited the health centre. They also had to wait many hours in several queues to pay the consultation fee, be weighed Patient 2: Even sometimes when the nurses prescribe a and have their temperature taken, see the nurse and have two months supply the pharmacist will just say ‘‘I will the pharmacy fill their prescription. These health centre give you one month’s supply’’. (Patients, government visits sapped their already limited economic and physical hospital, FG) resources. Most patient informants were proud of their In the following quotation, a patient suggests that she adherence rates, eager to emphasise their understanding of received fewer pills as punishment for lacking money to the importance of taking their drugs correctly: pay the consultation fee, despite the fact that the nurse explained there was a drug shortage: I personally value my health, I love my family so much that I don’t want to die and leave them. So I religiously The habit of nurses saying ‘there are no drugs’ happens do what I am supposed to do to keep myself fit...My if you don’t have the money [consultation fee]. Like the main motive is to follow all that I am advised to do so last time the doctor prescribed us a full month’s supply that I can look after my children (Patient, Anglican of ARVs, but when we went to collect these from the hospital, FG) nurse, she said ‘Is your doctor normal? How can he allow you to get so many tablets? Where does he think I am sure very few people are not taking drugs as we get the drugs?’ And she gave a smaller supply, directed, because these drugs will not just be given to saying ‘these are the last pills we have in stock’. (Patient, anyone before they ascertain that you have been Catholic clinic, FG) counselled and understand that this is a lifelong course. Nobody would wake up one day and say ‘I am feeling As the following quotation illustrates, nurses and pharmacists frequently do not have the supplies for larger better now so I am stopping the drugs’. People really doses and feel that patients fail to understand this understand the value of taking these drugs as directed. limitation. (Patient, government hospital, FG) Health staff had several reasons for prescribing one Sometimes they just say they want a two months’ month of pills at a time. At times when ARVs were in short supply... they come up with all sorts of reasons and yet supply, staff had to give patients fewer pills and have them it affects us when we order from the AIDS and TB unit in come back for refills more frequently. When supplies were Harare. They will not understand this. Some have got adequate to give patients several months’ worth of pills, genuine reasons but some just want a two months’ nurses usually still gave out only one month’s supply in supply just for the sake of it being possible (Pharmacist, order to monitor adherence. To get their next instalment of government hospital, interview) pills, patients must show nurses the previous month’s In this way, many staff felt that seeking to limit clinic package of ARVs, which should have a few days’ worth of visits was not, in itself, a credible reason for wanting pill doses remaining. If the patient has more pills than he or several months dose at once—a patient must have some she should, nurses know that the patient has skipped pills additional reason such as travelling out of the region. and can intervene to improve adherence. Nurses also use Our study suggests that monthly refills deplete the the monthly refill visits to ask patients about their health energy of patients, involving patients in unnecessary and to track and deal with potential side effects or opportu- unaffordable expenditure on consultation fees and trans- nistic infections. However, for stable patients with a record port. However, in addition to drug supply irregularities, it of high adherence who have been on ART for over six seems that nurses perceive good clinical care to include months, such regular check-ups can be relaxed, according notions of surveillance, in contrast to patients who see to recent guidelines. The WHO’s (2006) ART recommenda- frequent visits as a hindrance to their well-being. tions suggest that clinical monitoring for stable patients can be performed every six months. 3.3.2. HIV clinic availability Misunderstandings arise because some patients think a Another area of stress and conflict between patients good nurse is one who prescribes several months of pills at and staff centred around long wait times at healthcare a time and that a bad nurse or pharmacist is someone who sites. Staff had several reasons for only offering ART review gives out smaller amounts of pills: dates (check-up and refill times) on one or two days of the week, rather than spreading appointments throughout the week. Staff felt that focusing on particular health condi- In 2008, the Zimbabwe government switched to a multi-currency system within which the US dollar is the most widely used currency. tions on particular days was more efficient because it saves C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 181 them from having to flip back and forth through different patients, since the hospitals do not receive these medicines patient and drug registers. This arrangement also facil- free through government or charity organizations. How- itates pharmacy efficiency, enabling them to package and ever, having to pay is not an unbendable rule. Sometimes account for the ARVs all at once. Nurses use the quieter, patients are denied service or drugs if they cannot pay; non-ART days to catch up on paperwork. other times, the fee is waived or turned into a debt. In contrast, patients dread these ART days. Since they Sometimes patients are referred to the accounts depart- are seen on a first-come-first-served basis people must ment and after negotiation are given permission to receive arrive extremely early in the morning and wait for hours in service or drugs for free. Patients often lamented that, very long queues, often of up to 40 people. A sense of fear regardless of whether fees were completely waived or not, and dread pervades these queues as patients scramble to they were subject to harsh, off-putting treatment if they keep their place in line and worry about not seeing the could not pay up-front: nurse before closing hours. Patients occasionally tried to They will say ‘How can you just walk up here and say avoid the long queues by coming on non-ART days: stamp my card without money?’ ...They say ‘You have Some people do avoid coming on their review dates to pay the dollar’. And when we say ‘No but we don’t because they know the queue will be very long here so have the money’, they respond ‘so do you want me to they would come two or three days later when the clinic pay for you?’ Then they refer us to the accounts section. will not be very busy (Nurse, government hospital, So even if we go on to get good service from the nurse interview) we would have been destabilized already (Patient, government hospital, FG) Patients reported that if they try to avoid the long queue by coming on a non-ART day the nurses demand an Patients and staff both recognized a lack of clear appropriate explanation (such as illness or funeral guidelines on the procedure for patients who cannot pay; it attendance), and that they seldom ‘got away with this’ often depends on the individual staff members working more than once. that day or the persuasiveness of the patients. This While some nurses mentioned the importance of seeing ambiguity leads to many stressful interactions where patients in a timely manner, most appeared not to patients plead for free care or medicine and nurses try to appreciate the severe discomfort associated with these balance their desire to help to poor patients with the need queues and waiting times for each refill. Staff occasionally to collect revenue for the health centre: even suggested that dedicated ART days benefited patients, We are also human beings so we hear all these stories, enabling them to meet with one another and discuss their people come with all their different stories and excuses condition: on why they should be exempted from paying for their When they come, they sit on the benches and start to tablets. Some of these stories also cause us a great deal discuss their issues. Sometimes we would be calling out of stress (Nurse, Anglican hospital, interview) names yet they would be busy discussing their issues. In a role-play performed by ART patients in a focus They are so happy one of them said when we meet we group, participants portrayed a nurse trying to send away have a lot to share and this disease has created friends someone who could not afford the consultation fee. But for us... it is good that they have their special day, they after further pleading, she relented. Another patient meet and discuss all their issues.. . I am sure they are describes how a ‘good nurse’ will coach the patient on keen to come here and spend the whole day discussing how best to present his or her case to the administration, their issues (Nurse, government hospital, interview) for example by advising them to ask for the fee to be made into a debt rather than waived. This sentiment failed to resonate with ART patients who The ambiguity surrounding payment for drugs and felt fast service was central to good care and who have consultation causes stress not only between patients and plenty of opportunities to discuss their conditions in local staff but also within different departments of the hospital. HIV support groups. When nurses or clerks, who control up-front payments, waive fees they often face reprimands from the accounts 3.4. Grey areas surrounding payments and access to service department. In the following quotation a nurse explains this tension: ‘Grey areas’ in policy (i.e. where rules exist but are widely known to bend) lead to stress, take up time and With accounts I think understanding each other is foster negative interactions between staff and patients. difficult. We need money when we are at accounts. So if There are two clear examples of these problematic grey a patient comes and you give her credit, then she comes areas, where patients and staff have different expectations again you give her another credit, the administrator will and needs which are mediated by ambiguous rules: disapprove of that (Nurse pharmacist, Anglican hospi- payment for medicine and consultation, and access to tal, FG) medical service. As mentioned above, each site charges a one or two Access to service presents another area that leads to conflict. There is a general understanding that the doctor dollar consultation fee. In addition, all medication other than ARVs and co-trimoxazole (a pre-ARV), such as drugs and nurses are seen on a first-come-first-served basis. However, this system is occasionally circumvented, for opportunistic infections, must be purchased by 182 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 particularly at the government hospital and particularly faced to attend hospital frequently; instead, they prior- when waiting for the doctor, where the stakes are higher itized careful, systematic and regular adherence surveil- than waiting for nurses since the doctor is available so lance and evidence of patient respect. Finding strategies to rarely. Doctor hours are limited and there are often lines of speed up patient visits on review days (perhaps by over 40 people to see the doctor in a 2-h window. Patients reviewing ART on more than one or two days a week or are sometimes advanced in line by nurses because they are increasing staff on high-capacity days) would go a long related to the nurse, due to severity of the illness, or way towards alleviating a key source of patient stress. because they are with children, as the quotation below Ambiguity surrounding various elements of hospital discusses. administration (especially paying for services/drugs and order of access to the doctor and nurses) lead to prolonged As you might know people have become very corrupt. If negotiations between staff and patients. Considering that you have relatives working there, then you will avoid all almost every patient is poor and in serious need of nurse or these queues and just come in front and get served doctor assistance, staff members struggle to choose who to while we spent the whole day waiting. (Patient, assist financially and who to prioritize in line. Add to that government hospital, FG) the pressure to help relatives and friends and it becomes clear that healthcare staff deal with many conflicting Since the justifications for changing the order are demands on a regular basis at work, for example, between flexible, patients feel very worried about losing their meeting patient needs and generating much needed position and sometimes try to assert their position in line revenue for their health centre. aggressively. Here we re-emphasise that the challenges facing staff 4. Conclusion and patients as ART becomes a lifelong reality for tens of thousands of Zimbabweans must be understood in the This paper has explored the perspectives of ART context of the overwhelmingly positive reception of ART in patients and nurses on what constitutes good clinical care the region. Overall, patients were extremely optimistic in the context of ongoing HIV/AIDS management through about their prospects of living on ART and their capacities ARV provision. We have sought to illustrate how conflict- to adhere to treatment. Praise for staff kindness were far ing expectations in ART-related clinical encounters can more commonplace than any type of complaint, a great lead to stressful and unsatisfying nurse–patient interac- testament to the commitment and capacities of these tions. To this end, we have presented findings that detail health staff who work in severely under-resourced specific areas where nurses and patients hold different settings. Likewise, staff were overwhelmingly optimistic conceptions of good clinical care and different priorities for about ARVs and expressed confidence in their ability to clinical interactions. provide good quality care. Healthcare staff often sought evidence of patient This case study takes into account the views of both obedience and respect. Whilst nurses seemed to regard patients and healthcare providers to explore the challenges these displays as facilitators of adherence and service of ART provision in a resource-poor setting. We have efficiency, patients often found these demands for obedi- sought to develop a more complete picture of why nurses ence disheartening. In some cases, nurses also appeared to and patients behave the ways they do and how their havesought evidence of their power over patients inorder to differing priorities play into their levels of satisfaction with cope with the day-to-day stress and disempowerment of clinical interactions. Our findings contribute to the working in resource limited and somewhat unpredictable literature on best practice in the era of ART by suggesting environments. As mentioned in the introduction, attempts that, contrary to the more common research concerns to use sensitization training to address abusive and about non-adherence and nurse burn out, clinical care that disrespectful staff behaviour in resource-poor settings have satisfies ART patients and nurses hinges on finding ways to proved challenging (e.g. Manongi et al., 2009). Without understand and address differing nurse and patient needs addressing root issues, such as chronic stress surrounding and priorities. shortages of staff, drugs and equipment alongside a lack of The role of underlying Christian values and links to respect between different healthcare cadres and low staff churches warrants further investigation as findings from accountability, it appears difficult to change healthcare this study suggest that patients appreciate the spiritual worker behaviour towards patients. However, the fact that dimension of the care and sense of solidarity offered by high quality care dominated in our study and that many of Christian healthcare facilities. The fact that ART was the instances of problematic staff–patient interaction were relatively new to our study sites (having begun slightly linked more to differing expectations than ill-will shows over a year prior to the study) limits our understanding of that resource limitations and compassionate nursing can go the longer-term evolution of patient-provider relation- hand-in-hand. Greater insight into the factors that facilitate ships in the era of ART. A follow-up study in 2012 that such compassionate nursing will help support future efforts revisits the same healthcare sites plans to provide further to foster positive staff–patient relationships in resource- insights into the long-term clinical interactions necessi- poor settings. tated by ART. Such a study will seek to further our Patients favoured an ART program where visits to the understanding of HIV nursing in the era of ART by hospital or clinic were quick and less frequent. Nurses illuminating whether our findings reflect the ongoing frequently overlooked or failed to concern themselves with practice of ART clinical care or initial excitement and the importance of fast service and the difficulties patients uncertainty related to the early stages of ART roll-out. C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 183 Gregson, S., Garnett, G., Nyamukapa, C., Hallett, T., Lewis, J., Mason, P., In the context of our interest in the implications of ART Chindiwana, S., Anderson, R., 2006. HIV decline associated with roll-out in sub-Saharan Africa and the special challenges behaviour change in rural Zimbabwe. Science 311, 664. posed by delivering this treatment in resource-strapped Jewkes, R., Abrahams, N., Mvo, Z., 1998. 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An Introduction to Qualitative Research, 3rd edition. Sage ZMoHCW (Zimbabwe Ministry of Health and Child Welfare), 2009. Zim- Publication, London. babwe National HIV and AIDS Estimates. ZMoHCW, Harare. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png International Journal of Nursing Studies Unpaywall

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

Campbell, Catherine; Scott, Kerry; Madanhire, Claudius; Nyamukapa, Constance; Gregson, Simon
International Journal of Nursing Studies – Sep 1, 2010
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0020-7489
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10.1016/j.ijnurstu.2010.07.019
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International Journal of Nursing Studies 48 (2011) 175–183 Contents lists available at ScienceDirect International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns 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 a, a b b,c Catherine Campbell *, Kerry Scott , Claudius Madanhire , Constance Nyamukapa , b,c Simon Gregson Health, Community and Development, Institute of Social Psychology, London School of Economics, London, United Kingdom Manicaland HIV/STD Prevention Project, Biomedical Research and Training Institute (BRTI), Harare, Zimbabwe Department of Infectious Disease Epidemiology, Imperial College, London, United Kingdom AR TI CLE I NFO AB ST RACT Background: Antiretroviral treatment for HIV is gradually being made available across sub- Article history: Saharan Africa. With antiretroviral treatment, HIV can be approached as a chronic, Received 16 April 2010 Received in revised form 16 July 2010 manageable condition rather than a shorter-term issue of palliative care. This treatment Accepted 26 July 2010 involves repeated interaction between health staff and patients for ongoing check-ups and prescription refills. Keywords: Objective: This study aimed to understand patient and healthcare staff perceptions of good Antiretroviral treatment clinical antiretroviral treatment care. HIV/AIDS Design: Over 100 h of ethnographic observation at healthcare sites; interviews and focus Nurse–patient interaction groups with 25 healthcentre workers (mostly nurses), 53 HIV-positive adults taking ARVs Qualitative research and 40 carers of children on ART. The data were analyzed using thematic content analysis. Resource-poor healthcare centres Setting: Three healthcare sites providing free antiretroviral drugs in rural Zimbabwe, Zimbabwe where the adult HIV infection rate is approximately 20%. Results: Contrary to reports of poor antiretroviral treatment adherence and task-oriented rather than patient-oriented nursing, our study found great patient commitment to adherence, outstanding nurse dedication and a pervasive sense of hope about coping with HIV. Within this context however there were some situations where patients and nurses had different expectations of the medical encounter, leading to stress and dissatisfaction. Patients and staff both emphasized the importance of nurse kindness, understanding, confidentiality and acceptance (i.e. treating HIV patients ‘like normal’) and patient adherence to medical directions. However, nurses at times overlooked the negative effects of long wait times and frequent hospital visits. Further, nurses sometimes conflated medical adherence with general patient obedience in all aspects of the nurse–patient relationships. Patients and staff were frustrated by the ambiguity and unpredictability surrounding key elements of hospital visits such as how much patients had to pay for service, how long it would take to be served, and whether drugs or the doctor’s services would be available. 2010 Elsevier Ltd. All rights reserved. What is already known about the topic? * Corresponding author at: Institute of Social Psychology, London Antiretroviral treatment (ART) is increasingly accessible School of Economics, St Clements Building, Houghton Street, London to HIV-positive people in sub-Saharan Africa, primarily WC2A 2AE, United Kingdom. E-mail address: [email protected] (C. Campbell). through resource-poor healthcare centres. 0020-7489/$ – see front matter  2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2010.07.019 176 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 ART requires long-term nurse–patient interaction for throughout sub-Saharan Africa has been found to be high monitoring, adherence support and drug refill. (Amberbir et al., 2008; Bisson et al., 2008; Orrell et al., 2003); a recent study of Ugandan and Zimbabwean ART patients found that good adherence increased from 87%, What this paper adds four weeks after ART initiation to 94% at 48 weeks, but only half the patients achieved good adherence at every visit in Contrary to concerns about non-adherence issues and the first year (Muyingo et al., 2008). high levels of nurse burn out, nurses and ART patients in Making ART accessible to the general population in sub- rural Zimbabwe were positive about adherence levels Saharan Africa is a new phenomenon presenting new and primarily pleased with the quality of care provided, challenges. With treatment, HIV can be considered a despite staff and resource shortages. chronic disease requiring ongoing hospital visits and a Nurse–patient interactions surrounding ART nonetheless carefully managed drug regime rather than a terminal present challenges to both parties that stem from illness requiring palliative care. A patient found HIV differing struggles and priorities. positive today, with access to ART, can expect to live 10 These findings provide insights in the ongoing develop- years or more (Walensky et al., 2009). With frequent health ment of best practices in HIV nursing, with application to centre visits to renew prescriptions, ongoing interactions the general challenges of introducing new treatment with healthcare workers are becoming a routine feature of protocols in resource-poor areas in relation to any health many Africans’ lives. condition. ART has renewed nurses’ sense of hope but also increased their workloads (Stein et al., 2007). Overworked 1. Introduction nurses who lack sufficient material and emotional support often fall back on task- rather than patient-oriented care AIDS is the biggest killer in sub-Saharan Africa (WHO, (Fassin, 2008; Manongi et al., 2009). In the paper ‘Why do 2008a). In 2008 it accounted for 1.4 million deaths – 14.7% nurses abuse patients? Reflections from South African of total deaths – in the region (UNAIDS/WHO, 2009). HIV is obstetric services’ Jewkes, Abrahams and Mvo report that highest among economically productive adults of child- the frequent and often violent abuse of patients can be bearing age and has an enormous impact on families, caused by a complex interplay of concerns including communities, and regional economies. ART is gradually organizational issues (such as a lack of nurse account- being made affordable and accessible to HIV infected ability), professional insecurities, a perceived need to people across the continent predominantly through the assert control over the environment and sanctioning of the provision of free or highly subsidized antiretroviral (ARV) use of coercive and punitive measures to do so, and an drugs in under-resourced medical settings (WHO, 2008b). underpinning ideology of patient inferiority compared to ART is to be delivered through health centres as part of a the nurses’ status as middle-class professionals (1998, p. package of care that includes co-trimoxazole prophylaxis, 1781). Lewin and Green’s 2009 paper ‘Ritual and the counselling, the management of opportunistic infections organization of care in primary care clinics in Cape Town, and comorbidities, and nutritional support. Following South Africa’ reports similarly fraught, although less several counselling sessions, patients are initiated onto overtly violent, patient–provider relationships. They found ART by a doctor. Nurses provide the majority of subsequent that healthcare providers used rituals (directly observed support through meeting with patients at the clinic on a treatment of tuberculosis and daily prayer) to reinforce regular basis. asymmetrical relations of power and to strengthen ART roll-out presents new opportunities and challenges conventional modes of provider–patient interaction, char- for healthcare providers, heralding a new era of HIV acterized by rigid hierarchy. Such problematic relation- nursing in Africa. ART enables different types of relation- ships have presented significant barriers to the roll-out of ships between nurses and patients, characterized by new healthcare regimes in Africa, such as TB treatment regular interactions over many years for check-ups and (Lewin et al., 2005) and mental healthcare (Petersen, refills. Optimising the positive opportunities presented by 1999), and could be a potential barrier to ART roll-out. ARVs requires a greater understanding of the changes they There has been little examination of the needs, bring and the supports required by patients and nurses. We expectations and interactions of ART patients and the examine these issues through a case study of HIV-positive nurses who care for them. Understanding what patients people receiving free ARVs through three healthcare and nurses perceive to be good ART-related clinical care centres in rural Zimbabwe. This paper explores how and exploring differences in these perceptions is a vital patients and nurses view the changes and challenges component of improving HIV care in poor countries. Most brought about by ART. studies on patient–health worker interaction in the field of Zimbabwe was one of the first African countries to HIV focus on HIV/AIDS care before ARVs were widely show a declining HIV rate (UNAIDS/WHO, 2005) with the available (e.g. Ehlers, 2006; Kohi and Horrocks, 1994). The adult prevalence rate falling from 25% in 1997 to 13.7% in studies that do examine clinical interactions surrounding 2009 (ZMoHCW, 2009). Despite major challenges in the ART are generally from rich countries (e.g. Wood et al., early 2000s, ARVs have become increasingly accessible in 2003) where ART has been accessible for significantly Zimbabwe and by the end of 2009 the government longer than in developing countries such as Zimbabwe. succeeded in getting over 218,000 people on ART, 56% of Research on ART in poor countries is very new and tends to those needing treatment (UNAIDS, 2010). Adherence focus primarily on issues of patient non-adherence (Rosen C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 177 Table 1 et al., 2007; Wringe et al., 2009) or explore the views of Summary of study participants. either health workers or HIV patients, rather than both (e.g. Wouters et al., 2008; Stein et al., 2007). Participants Interviews FGD Improving the clinical experiences for patients and Staff 25 18 1 health staff in resource-poor environments is vital to Carers of children 40 21 3 Patients 53 19 4 support the ongoing response to HIV. Good quality Total 118 58 8 patient–health worker relationships promote adherence (Deyo and Inui, 1980), with recent studies extending this finding to ART adherence (Roberts, 2002). Beyond adher- administrators); the Anglican hospital had a clinical ence, the importance of positive clinical experiences, officer, about 50 nurses and about 30 additional staff. including positive interactions with health workers, is At both sites, the doctor/clinical officer also visited smaller closely linked to patient willingness to pay for services clinics and attended meetings and workshops in the cities. (McPake, 1993) and nurse job satisfaction (Kangas et al., The bulk of patient care was provided by nurses and 1999). counsellors. At the government hospital, the doctor had so It is less clear what factors lead to positive clinical many commitments outside the hospital that he was only experiences for patients and how more positive patient– able to treat hospital out-patients once every two weeks. health worker interactions can be fostered, particularly for The Catholic clinic was visited monthly by a doctor and patients on ART in resource-poor settings. Efforts to improve was otherwise staffed by nurses. the nurse–patient interface frequently fail. For example, nurses in Tanzania recognized they were often rough with 2.2. Research design patients and provided slow service but suggested these problems stemed from complex issues surrounding low job The research involved interviews and focus groups with satisfaction and resisted simplistic sensitivity training patients, carers of children on ART and healthcare (Manongi et al., 2009). Manongi et al.’s study highlights providers (see Table 1), as well as ethnographic observa- the need for further research into the human dynamics of tion of treatment settings. clinical service delivery and how clashing expectations and Interviews and focus groups were conducted with a total needs of staff and patients can be addressed. To this end, our of 53 ARV users (19 one-hour interviews with people on paper will highlight how nurses and patients often have ARVs, and four two-to-three-hour focus groups with eight to different goals in the medical encounter, leading to stress 10 participants) and 40 carers of children on ART (21 and misunderstanding. interviews and three focus groups). Since carers of children on ART must attend the clinic for their child’s check-ups and prescription refills they have similar clinical experiences as 2. Methods adult ART patients. Most participants were recruited from Our qualitative research involved collaboration openly HIV-positive community members known to the between two British universities and a Zimbabwean public researchers through previous HIV/AIDS research. Others health institute. Research was conducted by four experi- were approached as they visited hospital or clinic sites. A enced fieldworkers over six weeks in 2009 in rural few participants approached the researchers asking to be Zimbabwe, focusing on three sites: a Catholic clinic, an interviewed because they had heard about the project. Anglican hospital and a government hospital. Details of the Researchers’ requests to interview a person on ART were region and health settings have been anonymised to only refused in one case, by someone who cited time protect the identity of participants. limitations. Topic guides explored changing perceptions of HIV, social support and ways of coping with HIV and ART, 2.1. Context issues surrounding treatment adherence, andexperiences at the healthcare centre. During focus groups with patients, The HIV rate in the region is approximately 20% participants were invited to perform a role-play of ‘a good (Gregson et al., 2006). Residents of the region are primarily dayat the clinic’ and‘a bad dayat the clinic’. These role-plays subsistence farmers. Most live in rural homesteads revealed a great deal about what makes clinical experiences (compounds with several mud and thatch houses, a pit- positive or negative for ART patients. latrine and animal pens), often without electricity. Large Interviews and focus groups were conducted with a commercial farming estates in the region employ a total of 25 health staff (nurses, HIV counsellors, pharma- significant portion of the local population. Many families cists and a clerk) at the three hospital/clinic sites, and one have members working in major cities, some of whom focus group was held at the Anglican hospital. A focus send money back to the rural areas. Poverty is a major group at the other two sites was not possible due to staff challenge and many local people receive food aid from shortages. Staff members had often been born in the region international organizations. or had moved there through marriage, sharing a common All three health centres studied had infrequent electricity. The Catholic clinic relied on water from a nearby hand pump while the other two had running water, A clinical officer is healthcare worker who is trained for three years albeit irregularly. The government hospital had one staff and received a diploma in community health, surgery and community doctor, almost 40 nurses and approximately 40 additional medicine. Clinical officers, unlike nurses, are licensed to prescribe staff (nurse aids, counsellors, pharmacists, cleaners and medicine and initiate ART in Zimbabwe. 178 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 identity with patients. Researchers received permission to happy to have access to free life saving drugs. Many spoke conduct the research from each health centre’s doctor or positively about the healthcare staff, the changes in their nurse-in-charge. Staff members were then approached lives since beginning ARVs and their adherence. individually to participate; all agreed. To elicit information Against this positive background, there were none- about challenges and positive elements of working with theless challenges and difficulties, especially surrounding HIV/AIDS patients and issues of clinic access and treatment in-clinic experiences and interactions. Findings on patient adherence, nurses were asked about their views of ‘good’ and staff perceptions of good care were for the most part and ‘bad’ patients, sources of frustration and support in consistent between the health centres and are thus their lives and their perceptions of proper clinical care. presented together; cases where significant differences Over 100 h of ethnographic observation were con- arose are specified. One note on site differences concerns ducted at the health centres, observing interactions as HIV the role of religion in the clinic. Some patients reported patients waited for the doctor, paid hospital fees, visited finding the religious atmosphere enriching to their the pharmacy, and waited for nurses to review their experience, as an ART patient explains: progress on ART and prescribe refills of their ARVs. There are times when the nurses come and greet Researchers did not observe private interactions between everybody and invite us into a room. In that room we patients and staff. Observation focused on hospital activity, pray together...after that we will get served in a very including interactions between patients and staff and the friendly fashion (Patient, Anglican hospital, focus group arrangement of people in hospital spaces. Extensive (FG)) detailed notes were taken by the researchers throughout the hours of observation, recording what occurred (and Staff at each site, however, generally favoured their own when), how people were organized within the clinic space type of institution. Nurses at the Christian sites felt and comments made about the experience. These notes patients preferred religious-based care. Government hos- were included in the body of text data (along with focus pital staff said secular care was better because it was free group and interview transcripts) for analysis. from church-related regulations. Data were collected by three Shona-speaking fieldwor- kers and a fourth researcher working with an interpreter. It is better here because the church can provide spiritual counselling, which does not happen in government All audio files were translated into English and transcribed by trained researchers. To thank the informants, focus hospitals. (Nurse, Anglican clinic, interview) group participants were given soap, and interviewees were I prefer working at a government hospital because the given a t-shirt. church hospital has too many church imposed regula- tions ... here we only follow government regulations. 2.3. Thematic analysis (Nurse, government hospital, interview) The data were analyzed using thematic content analysis Whilst staff seemed to favour their own type of (Flick, 2006). Thematic network analysis is a process of institution, many patients praised the encouragement encoding qualitative information to find, record and and camaraderie fostered by church-based clinics. interpret patterns in ‘raw’ text (in this case transcripts of interviews and focus groups and ethnographic notes 3.1. Ideal interactions between nurses and patients taken by researchers). Two researchers, working indepen- dently, carefully read and re-read the texts to find themes, At all sites, patients and nurses spoke of the importance called coding units, which describe and organize observa- of kindness, understanding, confidentiality and stigma tions, or interpret aspects of the phenomenon (i.e. nurse– reduction. Basic friendliness came up repeatedly, with patient interactions and conceptions of ‘good clinical patients and nurses showing how a greeting from a nurse care’). The researchers then grouped codes into larger or an expression of gratitude from a patient was vital to themes and compared their findings to ensure reliability. positive clinical interactions. Beyond the frequently These larger themes were finally grouped into five central observed friendly greetings, patients and staff commented themes, which were: ideal interactions between nurses on the importance of these interactions: and patients, obedience vs. adherence, control of ARV pills, We see the patients every month and serving them is a HIV clinic availability and ‘grey areas.’ These five themes pleasure because they are always cheerful and they ask provide the sub sections for the findings reported below. questions when they do not understand. They bring us bananas and whatever they have because we have built 3. Findings that relationship with them.. . just yesterday there is a guy who brought me some potato chips. (Pharmacist, Patients and nurses were overwhelmingly positive about government hospital, interview) ART and associated services. Many friendly staff–patients interactionswereobserved.Healthcarestaff expressed great Both nurses and patients said listening was vital to good satisfaction at seeing patients improve and were extremely clinical care: positive about adherence rates. They were also confident about the quality of their counselling services, often We listen to people’s personal problems because HIV is referring to its effectiveness in helping patients come to more than a medical condition (Nurse, Anglican terms with the challenges of HIV and ART. Patients were hospital, interview) C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 179 When they come here apart from getting their medication and accessing food to eat with drugs). The treatments they also want to be listened to, so we try importance of obeying counsellors’ and nurses’ directions to give them a chance to say what they want (Nurse, around taking ARVs was emphasized by both patients and government hospital, interview) health staff. However, the line between adherence to medical guidance regarding taking ARTs, and general I really appreciate their kindness and they always try to obedience to nurses was sometimes blurred. Patient listen when we have issues. (Patient, Anglican hospital, deference to nurses on medical issues and the assertiveness interview) of nurses on these same issues were appreciated by both parties. However, sometimes nurses appeared to require Patients expressed dissatisfaction when nurses did not deference for its own sake, as a way of exerting authority or appear to listen to them: affirming their importance and superiority to patients, rather than for medical reasons. Sometimes the nurse might just tell the patient to go on Hospital staff were occasionally observed to make bed rest without even listening to what the patient has seemingly arbitrary demands that patients line up, stand to say (Patient, Anglican hospital, FG) or sit. Patients also commented on the difficulty of this type of interaction: If they ask what you are suffering from, and they think you are not a good patient, some nurses will not even ... He will be shouting different kind of instructions for listen to what I am trying to tell them. They will just go example ‘‘make sure you are in line’’ and ‘‘may everyone ahead and write what they think on my card (Patient, sit down, I won’t serve anyone standing up’’. The government hospital, FG) benches will be full so some will sit on the floor...if you try to complain he might even shout at you (Patient, Patients appreciated staff taking an interest in their lives and getting to know them over time. Nurses similarly government hospital, FG) emphasized that their main source of motivation was Power inequalities between patients and healthcare seeing patients improve over time and developing positive staff are often enacted and reinforced through the control relationships with them. Nurses recognized the impor- of patient movement in hospital spaces (Jewkes et al., tance of being understanding about the difficult circum- 1998). Telling a patient to sit down can be a kind act or, stances that many HIV patients were dealing with. One conversely, a means to display gratuitous control. Some nurse explains her compassionate approach to patients patients referred to instances where they had felt who defaulted on appointments: disempowered by displays of power by health staff: Suppose a patient has missed the review date. The A ‘bad nurse’ may come at the bench and shout at those reasons that they give for missing it makes you reverse sitting there, saying: ‘You think I’m the one who caused your initial decision to feel frustrated or angry with you to get sick?’ and ‘You want to be helped?’ You just them. One will tell you they couldn’t get transport, or keep quiet but you won’t feel free (Patient, Catholic they could not get the money to come, and maybe today clinic, interview) they have borrowed money to be able to attend. For me to be dissatisfied with such a patient would mean that I 3.3. Conflicting perceptions surrounding how and when to was not doing justice to them. It’s often their life access ART situations that cause their behaviour. (Nurse, Anglican hospital, FG) The organization of ART programs served as the key area of misunderstanding between health workers and Almost all nurses said that maintaining confidentiality patients, and a key source of patient stress. When in good about patients’ HIV status was a core component of good health, most patients sought to attend the clinic as seldom nursing practice, expressing satisfaction with their and as possible for ARV refills and check-ups, and all wanted to their colleagues’ ability to achieve this. In the face of high receive reasonably prompt care during these visits. levels of HIV/AIDS stigma in the region, patients appre- However the ART programs in this region usually require ciated nurses treating them ‘normally’—like patients with patients to come for monthly ARV refills, with all ART different ailments. Handshakes featured prominently in patients coming on specific days, leading to bottlenecks accounts of positive nurse–patient relationships. Shaking and slow care. The healthcare staff have reasons for this hands is a culturally accepted greeting that enables nurses arrangement that are sometimes not understood or valued to show they are not afraid of touching HIV-positive by patients; likewise it appears that the negative effects on patients. patients of frequent, long visits are not always fully appreciated by staff. Conflicting expectations and desires 3.2. Adherence versus obedience surrounding monthly ARV drug refills and HIV clinic days are discussed in turn below. Nurses and patients agreed that good clinical care included providing counselling and a supportive environ- 3.3.1. Monthly ARV refills ment to help patients develop optimal adherence strategies. Patients and health staff had different perceptions of Adherence could be undermined by misunderstandings good care regarding how often patients should come to the about drugs, side effects, and the practical challenges of hospital to report to nurses and get their next instalment of taking ARVs correctly (including remembering to take 180 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 pills. Patients generally felt healthy and confident about One day we were discussing among ourselves after we their capacity to adhere. By contrast, nurses anticipated were just given two months supply of ARVs, so we were negative side effects and adherence problems, leading very happy about it saying, these nurses have been good them to schedule frequent visits to monitor patient to us. (Patient, Catholic clinic, FG) adherence and well-being. Most patients wanted several months’ supply of ARVs at a time, in a context where Patient 1: The nurses don’t agree to it [giving several people often lived far from health centres and lacked months’ supply at once]. They only provide two months money for transport. In addition, patients often battled to supply for people who will be travelling away for a long pay a one or two dollar consulting fee each time they time, because they say they need to see us regularly visited the health centre. They also had to wait many hours in several queues to pay the consultation fee, be weighed Patient 2: Even sometimes when the nurses prescribe a and have their temperature taken, see the nurse and have two months supply the pharmacist will just say ‘‘I will the pharmacy fill their prescription. These health centre give you one month’s supply’’. (Patients, government visits sapped their already limited economic and physical hospital, FG) resources. Most patient informants were proud of their In the following quotation, a patient suggests that she adherence rates, eager to emphasise their understanding of received fewer pills as punishment for lacking money to the importance of taking their drugs correctly: pay the consultation fee, despite the fact that the nurse explained there was a drug shortage: I personally value my health, I love my family so much that I don’t want to die and leave them. So I religiously The habit of nurses saying ‘there are no drugs’ happens do what I am supposed to do to keep myself fit...My if you don’t have the money [consultation fee]. Like the main motive is to follow all that I am advised to do so last time the doctor prescribed us a full month’s supply that I can look after my children (Patient, Anglican of ARVs, but when we went to collect these from the hospital, FG) nurse, she said ‘Is your doctor normal? How can he allow you to get so many tablets? Where does he think I am sure very few people are not taking drugs as we get the drugs?’ And she gave a smaller supply, directed, because these drugs will not just be given to saying ‘these are the last pills we have in stock’. (Patient, anyone before they ascertain that you have been Catholic clinic, FG) counselled and understand that this is a lifelong course. Nobody would wake up one day and say ‘I am feeling As the following quotation illustrates, nurses and pharmacists frequently do not have the supplies for larger better now so I am stopping the drugs’. People really doses and feel that patients fail to understand this understand the value of taking these drugs as directed. limitation. (Patient, government hospital, FG) Health staff had several reasons for prescribing one Sometimes they just say they want a two months’ month of pills at a time. At times when ARVs were in short supply... they come up with all sorts of reasons and yet supply, staff had to give patients fewer pills and have them it affects us when we order from the AIDS and TB unit in come back for refills more frequently. When supplies were Harare. They will not understand this. Some have got adequate to give patients several months’ worth of pills, genuine reasons but some just want a two months’ nurses usually still gave out only one month’s supply in supply just for the sake of it being possible (Pharmacist, order to monitor adherence. To get their next instalment of government hospital, interview) pills, patients must show nurses the previous month’s In this way, many staff felt that seeking to limit clinic package of ARVs, which should have a few days’ worth of visits was not, in itself, a credible reason for wanting pill doses remaining. If the patient has more pills than he or several months dose at once—a patient must have some she should, nurses know that the patient has skipped pills additional reason such as travelling out of the region. and can intervene to improve adherence. Nurses also use Our study suggests that monthly refills deplete the the monthly refill visits to ask patients about their health energy of patients, involving patients in unnecessary and to track and deal with potential side effects or opportu- unaffordable expenditure on consultation fees and trans- nistic infections. However, for stable patients with a record port. However, in addition to drug supply irregularities, it of high adherence who have been on ART for over six seems that nurses perceive good clinical care to include months, such regular check-ups can be relaxed, according notions of surveillance, in contrast to patients who see to recent guidelines. The WHO’s (2006) ART recommenda- frequent visits as a hindrance to their well-being. tions suggest that clinical monitoring for stable patients can be performed every six months. 3.3.2. HIV clinic availability Misunderstandings arise because some patients think a Another area of stress and conflict between patients good nurse is one who prescribes several months of pills at and staff centred around long wait times at healthcare a time and that a bad nurse or pharmacist is someone who sites. Staff had several reasons for only offering ART review gives out smaller amounts of pills: dates (check-up and refill times) on one or two days of the week, rather than spreading appointments throughout the week. Staff felt that focusing on particular health condi- In 2008, the Zimbabwe government switched to a multi-currency system within which the US dollar is the most widely used currency. tions on particular days was more efficient because it saves C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 181 them from having to flip back and forth through different patients, since the hospitals do not receive these medicines patient and drug registers. This arrangement also facil- free through government or charity organizations. How- itates pharmacy efficiency, enabling them to package and ever, having to pay is not an unbendable rule. Sometimes account for the ARVs all at once. Nurses use the quieter, patients are denied service or drugs if they cannot pay; non-ART days to catch up on paperwork. other times, the fee is waived or turned into a debt. In contrast, patients dread these ART days. Since they Sometimes patients are referred to the accounts depart- are seen on a first-come-first-served basis people must ment and after negotiation are given permission to receive arrive extremely early in the morning and wait for hours in service or drugs for free. Patients often lamented that, very long queues, often of up to 40 people. A sense of fear regardless of whether fees were completely waived or not, and dread pervades these queues as patients scramble to they were subject to harsh, off-putting treatment if they keep their place in line and worry about not seeing the could not pay up-front: nurse before closing hours. Patients occasionally tried to They will say ‘How can you just walk up here and say avoid the long queues by coming on non-ART days: stamp my card without money?’ ...They say ‘You have Some people do avoid coming on their review dates to pay the dollar’. And when we say ‘No but we don’t because they know the queue will be very long here so have the money’, they respond ‘so do you want me to they would come two or three days later when the clinic pay for you?’ Then they refer us to the accounts section. will not be very busy (Nurse, government hospital, So even if we go on to get good service from the nurse interview) we would have been destabilized already (Patient, government hospital, FG) Patients reported that if they try to avoid the long queue by coming on a non-ART day the nurses demand an Patients and staff both recognized a lack of clear appropriate explanation (such as illness or funeral guidelines on the procedure for patients who cannot pay; it attendance), and that they seldom ‘got away with this’ often depends on the individual staff members working more than once. that day or the persuasiveness of the patients. This While some nurses mentioned the importance of seeing ambiguity leads to many stressful interactions where patients in a timely manner, most appeared not to patients plead for free care or medicine and nurses try to appreciate the severe discomfort associated with these balance their desire to help to poor patients with the need queues and waiting times for each refill. Staff occasionally to collect revenue for the health centre: even suggested that dedicated ART days benefited patients, We are also human beings so we hear all these stories, enabling them to meet with one another and discuss their people come with all their different stories and excuses condition: on why they should be exempted from paying for their When they come, they sit on the benches and start to tablets. Some of these stories also cause us a great deal discuss their issues. Sometimes we would be calling out of stress (Nurse, Anglican hospital, interview) names yet they would be busy discussing their issues. In a role-play performed by ART patients in a focus They are so happy one of them said when we meet we group, participants portrayed a nurse trying to send away have a lot to share and this disease has created friends someone who could not afford the consultation fee. But for us... it is good that they have their special day, they after further pleading, she relented. Another patient meet and discuss all their issues.. . I am sure they are describes how a ‘good nurse’ will coach the patient on keen to come here and spend the whole day discussing how best to present his or her case to the administration, their issues (Nurse, government hospital, interview) for example by advising them to ask for the fee to be made into a debt rather than waived. This sentiment failed to resonate with ART patients who The ambiguity surrounding payment for drugs and felt fast service was central to good care and who have consultation causes stress not only between patients and plenty of opportunities to discuss their conditions in local staff but also within different departments of the hospital. HIV support groups. When nurses or clerks, who control up-front payments, waive fees they often face reprimands from the accounts 3.4. Grey areas surrounding payments and access to service department. In the following quotation a nurse explains this tension: ‘Grey areas’ in policy (i.e. where rules exist but are widely known to bend) lead to stress, take up time and With accounts I think understanding each other is foster negative interactions between staff and patients. difficult. We need money when we are at accounts. So if There are two clear examples of these problematic grey a patient comes and you give her credit, then she comes areas, where patients and staff have different expectations again you give her another credit, the administrator will and needs which are mediated by ambiguous rules: disapprove of that (Nurse pharmacist, Anglican hospi- payment for medicine and consultation, and access to tal, FG) medical service. As mentioned above, each site charges a one or two Access to service presents another area that leads to conflict. There is a general understanding that the doctor dollar consultation fee. In addition, all medication other than ARVs and co-trimoxazole (a pre-ARV), such as drugs and nurses are seen on a first-come-first-served basis. However, this system is occasionally circumvented, for opportunistic infections, must be purchased by 182 C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 particularly at the government hospital and particularly faced to attend hospital frequently; instead, they prior- when waiting for the doctor, where the stakes are higher itized careful, systematic and regular adherence surveil- than waiting for nurses since the doctor is available so lance and evidence of patient respect. Finding strategies to rarely. Doctor hours are limited and there are often lines of speed up patient visits on review days (perhaps by over 40 people to see the doctor in a 2-h window. Patients reviewing ART on more than one or two days a week or are sometimes advanced in line by nurses because they are increasing staff on high-capacity days) would go a long related to the nurse, due to severity of the illness, or way towards alleviating a key source of patient stress. because they are with children, as the quotation below Ambiguity surrounding various elements of hospital discusses. administration (especially paying for services/drugs and order of access to the doctor and nurses) lead to prolonged As you might know people have become very corrupt. If negotiations between staff and patients. Considering that you have relatives working there, then you will avoid all almost every patient is poor and in serious need of nurse or these queues and just come in front and get served doctor assistance, staff members struggle to choose who to while we spent the whole day waiting. (Patient, assist financially and who to prioritize in line. Add to that government hospital, FG) the pressure to help relatives and friends and it becomes clear that healthcare staff deal with many conflicting Since the justifications for changing the order are demands on a regular basis at work, for example, between flexible, patients feel very worried about losing their meeting patient needs and generating much needed position and sometimes try to assert their position in line revenue for their health centre. aggressively. Here we re-emphasise that the challenges facing staff 4. Conclusion and patients as ART becomes a lifelong reality for tens of thousands of Zimbabweans must be understood in the This paper has explored the perspectives of ART context of the overwhelmingly positive reception of ART in patients and nurses on what constitutes good clinical care the region. Overall, patients were extremely optimistic in the context of ongoing HIV/AIDS management through about their prospects of living on ART and their capacities ARV provision. We have sought to illustrate how conflict- to adhere to treatment. Praise for staff kindness were far ing expectations in ART-related clinical encounters can more commonplace than any type of complaint, a great lead to stressful and unsatisfying nurse–patient interac- testament to the commitment and capacities of these tions. To this end, we have presented findings that detail health staff who work in severely under-resourced specific areas where nurses and patients hold different settings. Likewise, staff were overwhelmingly optimistic conceptions of good clinical care and different priorities for about ARVs and expressed confidence in their ability to clinical interactions. provide good quality care. Healthcare staff often sought evidence of patient This case study takes into account the views of both obedience and respect. Whilst nurses seemed to regard patients and healthcare providers to explore the challenges these displays as facilitators of adherence and service of ART provision in a resource-poor setting. We have efficiency, patients often found these demands for obedi- sought to develop a more complete picture of why nurses ence disheartening. In some cases, nurses also appeared to and patients behave the ways they do and how their havesought evidence of their power over patients inorder to differing priorities play into their levels of satisfaction with cope with the day-to-day stress and disempowerment of clinical interactions. Our findings contribute to the working in resource limited and somewhat unpredictable literature on best practice in the era of ART by suggesting environments. As mentioned in the introduction, attempts that, contrary to the more common research concerns to use sensitization training to address abusive and about non-adherence and nurse burn out, clinical care that disrespectful staff behaviour in resource-poor settings have satisfies ART patients and nurses hinges on finding ways to proved challenging (e.g. Manongi et al., 2009). Without understand and address differing nurse and patient needs addressing root issues, such as chronic stress surrounding and priorities. shortages of staff, drugs and equipment alongside a lack of The role of underlying Christian values and links to respect between different healthcare cadres and low staff churches warrants further investigation as findings from accountability, it appears difficult to change healthcare this study suggest that patients appreciate the spiritual worker behaviour towards patients. However, the fact that dimension of the care and sense of solidarity offered by high quality care dominated in our study and that many of Christian healthcare facilities. The fact that ART was the instances of problematic staff–patient interaction were relatively new to our study sites (having begun slightly linked more to differing expectations than ill-will shows over a year prior to the study) limits our understanding of that resource limitations and compassionate nursing can go the longer-term evolution of patient-provider relation- hand-in-hand. Greater insight into the factors that facilitate ships in the era of ART. A follow-up study in 2012 that such compassionate nursing will help support future efforts revisits the same healthcare sites plans to provide further to foster positive staff–patient relationships in resource- insights into the long-term clinical interactions necessi- poor settings. tated by ART. Such a study will seek to further our Patients favoured an ART program where visits to the understanding of HIV nursing in the era of ART by hospital or clinic were quick and less frequent. Nurses illuminating whether our findings reflect the ongoing frequently overlooked or failed to concern themselves with practice of ART clinical care or initial excitement and the importance of fast service and the difficulties patients uncertainty related to the early stages of ART roll-out. C. Campbell et al. / International Journal of Nursing Studies 48 (2011) 175–183 183 Gregson, S., Garnett, G., Nyamukapa, C., Hallett, T., Lewis, J., Mason, P., In the context of our interest in the implications of ART Chindiwana, S., Anderson, R., 2006. HIV decline associated with roll-out in sub-Saharan Africa and the special challenges behaviour change in rural Zimbabwe. Science 311, 664. posed by delivering this treatment in resource-strapped Jewkes, R., Abrahams, N., Mvo, Z., 1998. 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