Background
Estimates predict that by 2030 non-communicable diseases (NCDs) will account for five times as many deaths as infectious diseases in low- and middle-income countries (LMICs) and that 80% of global death from NCDs will occur in these countries [
1,
2]. Compared to 23 other LMICs, South Africa (SA) has the third highest death rate due to NCDs per 100,000 adults – with cardiovascular disease and diabetes serving the largest load [
3]. Beyond reduced quality of life, families face long-term medical expenses and loss of income earners, employers experience increased staff turnover and absenteeism, and it is estimated that between 2006 and 2015 diabetes, stroke, and coronary heart disease alone cost SA nearly two million US dollars in gross domestic product losses [
1]. All of this is occurring in a country characterised by a quadruple burden of disease including NCDs, infectious diseases, injuries, HIV/AIDS, and a demographic shift resulting in people living for longer [
4]. This disease profile of SA puts immense pressure on its already under resourced and overburdened health care system.
With this in mind, a large public hospital in South Africa sought to design and implement a Stewardship Programme that would better support growing numbers of patients presenting with diabetes complications in order to reduce the need for health services long-term health. International research into chronic care strategies highlights self-management and patient empowerment as important elements of effective chronic care as people need to manage their disease long after visiting a health professional [
5‐
10]. While there is no set definition of empowerment, research tends to converge around measures of having control, being able to make decisions, believing in oneself, and being able to self-manage the disease [
11]. An empowered patient would therefore be more able to adapt, question, challenge, and change their daily practices in an attempt to maximise their physical, emotional, and social wellbeing [
12].
Currently, there is little application of chronic care and empowerment building models in hospital settings. A recent systematic review of self-management interventions for people with diabetes found positive health outcomes for interventions that engaged, educated, and motivated patients to set health goals and manage their insulin while in hospital [
13]. However, only ten inpatient-based studies were identified and all were conducted in high-income countries. A mixed-methods analysis of over fifty of the top performing hospitals in the United States found they all had a high commitment to multi-disciplinary teams continuously engaging with patients about their needs and informing them about processes and future care while hospitalised [
14], Hospitalisation is a prolonged point of contact between health professionals and patients that could potentially be used for patient education and training [
15,
16]. Since many patients in this South African hospital come from a background of poor education and poor access to healthcare, the prolonged hospital stay represents a window of opportunity to make a significant impact on the ability of the patient to participate in self-care and become empowered. This is particularly important in LMICs where on discharge a person’s next access to a healthcare facility may only be after many months [
17]. Therefore there is value in exploring the potential, but as yet, unclear, role that chronic care thinking can play in the unique setting of the hospital, particularly in a low-income and high NCD burden context.
This paper reports exploratory research undertaken to support the development of this hospital intervention. The aim of the research was to understand what factors in patients’ personal lives and in the health system influence whether patients feel empowered to self-manage their chronic disease once they leave a hospital setting. The paper draws out lessons for future inpatient empowerment interventions to consider in their design and implementation.
Results
The experiences of participants were categorised into three broad themes: patient context, the inpatient setting, and the patient-provider relationship.
Patient context
Five of the patients interviewed were young, in their 20s or early 30s, and had been diagnosed with diabetes within the last month; the other two were in their 40s and had been living with diabetes for over ten years. The participants had a mix of Type 1 and Type 2 diabetes and were hospitalised for a variety of reasons. The younger participants were hospitalised for symptoms relating to diabetes such as onset of symptoms for the first time (short breath, frequent urination, weight loss, increased thirst) or similar symptoms due to not taking their medication correctly. One of the older patients was hospitalised for a leg amputation due to his diabetes while the other was hospitalised due to a new diagnosis of cancer.
All patients came from lower income communities. The wider context of poverty, and its impact on family and friends, clearly influenced patients’ lifestyles, and their approach to chronic health care and health professionals’ advice. Firstly, all patients had family or friends with diabetes and so, while the newly diagnosed patients were often nervous about the disease, they were still confident that they understood it. However, the advice and support offered by others was often misinformed and ineffective, as their peers did not always have access to the best sources of health education and resources in their LMIC setting. This led, sometimes, to patients engaging in inappropriate care or being discouraged from seeking formal health care.
“At the beginning I was not that confident because people were saying you are going to be cut, so I was like okay let me just keep my mouth shut … Yes, sometimes, like negative. ‘It’s better to have HIV than [diabetes]’... I feel like I’ve got this disease that is normally in the old people, now I’ve got this disease like I did something wrong, what did I do now?” [C2].
In addition, if the patients did become aware of the misinformation surrounding them, they often felt unable to access appropriate information and care as clinics were far away, medication expensive, or health providers in their communities were perceived to be of relatively low quality. Only one participant had a job; two had to resign from their jobs when admitted as inpatients, and the others relied on family support or a social grant to pay for health care appointments, transport, and medical equipment. This meant that health care was often not a priority compared to other financial demands.
“The two main issues that stops [patients] engaging in primary care. The first one is their social situation, there are far more important things in their life like ‘where do I get my next job from, my son is a drug addict, there’s no food on the table, what am I going to do?’” [A2].
“Food insecurity is a huge issue... Crime huge issue, their monitor is being stolen, their medication is being stolen, being mugged, going to the day hospital is often dangerous. So it’s a huge challenge.” [A6].
The availability of financial and economic support affected, therefore, the extent to which patients with a chronic illness were able to prioritise caring for their health over other needs.
“A very empowered patient, if there’s nothing that you’ve got to eat and at the second day of not eating you get given a chocolate you eat the chocolate, it doesn’t matter how empowered you are.” [A6].
The setting of low socio-economic status (SES), misinformation, and inadequate healthcare access significantly affected the younger patients. This group all still lived with their immediate family – likely due to financial dependence and social norms - and so were all influenced by family norms more than the older, independent patients. They mentioned the challenge of their family eating unhealthy foods, and how this made it more difficult to adhere to their diet plans. Three patients (and two health professionals) noted that young patients did not like feeling different from others, as when eating different foods and pricking their finger, or feeling like they cannot engage in fun but unhealthy activities with their peers. In contrast, one of the older patients, who headed her household and had more independence, income and experience, was better able to influence her family to engage in healthier lifestyle activities, making it easier for her.
Health professionals and patients both reported that an additional burden for young people in this setting could be a sense of helplessness over future financial stability and potential employment.
“In the young adult clinic there’s a sense of hopelessness about jobs. They sit around at home, they are isolated they are alienated they don’t have friends in the neighbourhood. It’s a really hard actually. We need much more social support. It’s a lonely business.” [A5].
These frustrations often then presented themselves in defiant and dismissive behaviour towards health care. Two health care professionals noted that younger people were less compliant with authority than other groups, took more health risks, and had less commitment to long-term care.
“But the thing is mostly young people, in their teens and early 20s. And they are the group that’s usually unfortunately uncompliant. They do not take medication, they do not rock up for appointments, they always have one or another excuse.” [B1].
The dependence of young patients on families also added complexity to their health care engagement. Two health professionals emphasised the importance of including family in the diabetes education of the patient – in order to increase household knowledge and so develop patient support systems. However, another health professional warned that some families can try to take control of appointments, assuming patient naivety and dependence, discouraging young patients from taking an active role in their care. Patients may, then, be tempted not to share their diabetes status with others in fear of being reprimanded when ‘cheating’ on their diet or lifestyle.
“[The patient] refuse to come to the clinic because [the doctors] have access to their mother at home, and their mother constantly when he comes here will reprimand him and he couldn’t handle it.” [B1].
Despite the challenges, patients were also sometimes motivated to engage in their chronic care. All the young patients mentioned that being surrounded by appropriate support systems was helpful. Two patients commented on the usefulness of local diabetes clubs for education, advice, and medical care access. Four of the patients drew motivation from their children as they wanted to be healthy and see them grow. One health professional mentioned that when patients had high levels of resilience then they were able to overcome many of their health care barriers.
“So there’s the person and then there’s where they live and it’s the interaction between the two, and there’s resilience and there’s ability to cope, there’s support. They all play out differently.” [A5].
Three of the patients mentioned that the shock of experiencing or seeing adverse symptoms, especially those that resulted in hospitalisation, helped them understand how serious their diagnosis was and how necessary it was to heed health advice.
The inpatient setting
The hospital setting, providing short-term inpatient care for sick patients, offers a particular set of circumstances that affects the way health providers are able to engage with patients and vice-versa.
Patients are particularly sick when hospitalised, which affects their care in various ways. Firstly, three patients noted that the day-to-day experience in the hospital did not reflect real world behaviours: receiving all meals ready-made and eating when it suited the hospital; undergoing intense medical procedures; and the difficulty of sleeping amongst tubes and hospital sounds.
“Of course when patients are admitted to the ward they are completely disempowered. That’s how hospitals work. You take all their rights and privileges away. You even take their clothes away and give them a funny white blue gown where their bum sticks out. You know they are completely disempowered and they have almost no say in what happens to them.” [A2].
Other patients also noted that they were distracted by how they were going to afford their health care costs, especially when they were unable to work while hospitalised.
Secondly, four health professionals perceived that the hospital care was fragmented, despite high rates of multi-morbidity in chronic disease. Initial treatment is provided for the problem for which the patient is admitted, making it difficult for health providers to respond holistically. One health professional explained that doctors in different wards can even forget to record diabetes medicine when discharging patients, forcing patients to return prematurely in order to retrieve the correct medication.
“It is a problem because the way the system is designed when you’re in a surgical ward for procedures you’re being managed for the procedure, so diabetes is not your focus … we’re focusing now on your procedure I’ll just continue whatever was done even if it’s not appropriate.” [A1].
Another feature of the inpatient setting is the acute nature of care. Providers found that in the rush to treat a patient there was little time to provide relevant education and allow for patient independence in their care, even if the patient was relatively healthy and had time.
“There is a lot of potential contact hours, other than the 6 minutes and [the doctor is] gone. [The patient is] in the hospital for many many hours, 5 days 6 days, so there’s lots of opportunity for contact time”. [A2].
One nurse mentioned that as responsibility rested with her if something went wrong, it was easier to take control and guarantee that the patients were receiving the necessary treatment.
“It’s inpatient, so the patient is totally dependent on us as nursing staff. We do the blood glucose checking, insulin we give ourselves. We had times when people were taking their own insulin but their glucose don’t come down or they just shoot up. They don’t do the insulin correctly so the nursing staff we do everything for the patient, as an inpatient the patient is our responsibility … The insulin is kept in the fridge and the needles is kept with us, you know with medical and legal hazards so it’s better if we give it.” [B3].
Shortage of staff
The perceived shortage of staff was also noted as encouraging provider control over patients, as health professionals found they did not have the time to train, watch, and retrain patients in their own care.
“What she also mentioned to me, which I wasn’t happy with, I asked ‘do you tell the doctor all these things?’ she said ‘I would have but the doctor was in a hurry’”. [B1].
All the nurses explained that not being able to provide quality care due to staff shortages and long hours left them feeling tired and demotivated to work. They could not then gain the gratification of seeing patients improve, nor have the energy to lobby for better hospital processes or attend extra training workshops. As the frontline workers who interact most with patients they were expected to take full responsibility for all aspects of patient care – beyond levels they felt were reasonable given the hospital constraints.
“Six nurses for a whole ward of 30 patients, with walls in between. We can’t see behind that wall what that patient is doing, but management asks ‘where are the nurses?’ So six nurses must now cut themselves, put my arm there, my head there then at least every part will look at the patients.” [B3].
As the hospital under review serves as a training institution, it had particularly high levels of staff turnover. Health professionals were often on training rotation, support from medical students disappeared during examinations, and graduates often moved on.
Health system bureaucracy
Health providers were also influenced in many, less obvious, ways by the bureaucracy, institutional habits, and relationships that occur in complex health systems. For example, all the health professionals experienced problems with the ways in which information or expectations from leadership was shared, and how changing information often created confusion and so resistance. Specifically, respondents noted that older providers often become ‘stuck in habits’ [A6], and become wary of any new guidelines that may add to their workload. In addition, most health professionals indicated that the short-term staff hired to make up for shortages were often disinterested in new protocols making it difficult to create teams with good communication and updated training.
“The first thing is getting buy-in from everybody, making sure everyone is educated. It’s actually quite hard, partly because the staff rotate all the time. Our nursing staff, 40% are locum staff, they don’t belong to the hospital, they don’t care about the hospital, they just here to do a shift and then leave, they don’t have a clue what’s going on... The doctors rotate every three months, depends on where you catch them. So you have this constant staff turnover.” [A2].
“…the cogs of the wheel in this huge bureaucracy move very slowly.” [A6].
One important, but difficult and time-consuming, strategy that all of the of health professionals noted would support the implementation of improvement strategies is that of prioritising staff buy-in. Providers suggested this would call for all staff to be consulted and engaged with plans for change before they took place. They felt that this would not only help to identify the potential problems of the proposed programme before implementation but would also encourage staff to understand and proactively engage in implementing new interventions.
“I think sometimes the resistance is always from staff initially. Is it added work for us? How are we going to fit this into an already tight schedule? And usually the resistance decreases when you can see the impact.” [A1].
It is important to note however that the key concern is how staff are engaged rather than just engaging widely. For example, five health professionals felt that workshops and personal engagement were more useful than receiving a long text about changes. In addition, all providers noted that staff need to feel that they are being included in changes and that their opinion is actually truly valued.
“And they will see that the people that’s doing the work, like us here, we will come up with the right solutions because we deal with it on a daily basis and not management upstairs.” [B1].
Insubstantial engagement on the other hand could lead to continued resistance to new hospital processes.
“Communication is good. But sometimes communication is very bad amongst staff … doctors included. And the higher authority there. They just come on us and dump things on us ‘dwah’. Like we are robots. We are not robots, we are also human beings but to them we are just a workforce… Not to say that we don’t have a say but when it comes to us it’s already decided …. They just give orders, we’re the followers … some of them don’t even greet you, they just greet you if they want something.” [B3].
Patient-provider relationship
The context of the patient and the health provider interacted in complex ways. Three respondents recognised that the controlling nature of the inpatient setting, coupled with staff-shortage and turnover issues, meant that health professionals could often become inflexible, rushed, and rude to patients. This could, in turn, create resistance from patients, as they felt they were not being given attention nor offered holistic care. One patient relayed her experience of dealing with a doctor who argued that he was the health expert and so would not listen to her.
“He said okay I give up. Before he said that he pointed his finger at me and said ‘as long as you are in this hospital you are not going to refuse this’ …. I am the one who is diabetic, I have experiences… This is my body; I’ve been diabetic for 20 years. I know what is right and what is wrong. I may not be a doctor but I know about diabetes, I learn in in the clinic about diabetes, I go to clubs. So I know what I’m talking about.” [C7].
Three of the health professionals noted that the low SES context of the patient greatly affected the way they related to them. One provider explained that some patients sold their medication and equipment, as they were desperate for the finances. Another admitted that providers engaged more actively with patients from particular age and income groups who were assumed to be more capable of taking care of their chronic disease.
“I think we are sometimes judgemental if a student comes here in tertiary education then we give all the information. Now someone comes from a rural area then we give only certain information which is unfair. We should actually give all information to everybody, what they do with it is their problem, but we sometimes judge people when it comes to that.” [B1].
While often easier for health professionals to take control, this “treating patients like a baby” [B1] approach, could result in negative effects. One health professional complained that in the time between discharge and follow up appointments, patients have often not correctly used their medicines because they were not adequately empowered during their inpatient stay. Another admitted that this controlling approach could dampen a patient’s ability and enthusiasm to do things for themselves, resulting in poor health outcomes post-discharge.
“I think sometimes they don’t feel like going home, because sometimes they feel, not that they going to be neglected, but I mean here they being cared for, take the tablets, and washed. Now they scared to go home because they scared to keep up.” [B2].
Two health professionals reported that they have played social worker in order to navigate the many needs of a patients and that this can be a heavy emotional burden for them. Considering this, they explained how necessary it was to work closely with other social welfare sectors.
“When it comes to the hospital, it’s like we expect for them to give us all information which they are not giving. We want them to be open and honest but they’re just a human being. I had a patient that I must educate here, and when I said regarding the insulin ‘try with something to eat’. It’s no use I’m having all this pamphlets and magazines I’m showing her and then what she said sometimes she needs to go to the neighbour to get something to eat just so she can take her insulin. And I stopped the education immediately and … I referred her to Social Work for a food parcel. Because sometimes we educate and we educate but forget the circumstances at home.” [B1].
Patients and health providers did however note some important roles that the hospital played in encouraging patient enthusiasm and engagement in chronic care. For example, as the hospital is better resourced than many other health facilities in the country, it could often better provide equipment and medicines to patients. Two patients relayed their experience of being able to access insulin and a glucose meter at the hospital and not elsewhere. Two health professionals explained that when they went beyond their expected hospital role and made a deeper connection with the patient, then they were able to overcome many of the barriers of the hospital and home context. Specifically, including patients in creation and planning of their treatment plan, ensuring they understand the disease and medical procedures, and providing a sense of security and understanding that encouraged honest and open patient-provider engagement.
“You not only have to educate but also convince them to want to be educated … So then, from there I notice [I] have a bond with them… … If I am saying there is a need for this close relationship, it’s amazing because they get so interested, they come … So they feel so motivated because at least now they are participating…I am always telling them that I am with them in their journey… to be in partnership with them, they really like it.” [B5].
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