Chronic kidney disease (CKD) patients rely on non-professional health care providers, namely caregivers to manage their long-term condition. Despite the growing literature on CKD patients, little is known about the perceptions of caregivers regarding integrated management of CKD.
The aim of the study was to explore the perceptions of caregivers with regard to integrated management of CKD patients.
The study took place in selected public hospitals of KwaZulu-Natal Province, South Africa.
A qualitative case study design was used. A purposive sampling method was used to select the study participants. Data were collected through a semi-structured interview schedule developed from the literature. Data were analysed through thematic template approach using Health Belief Model constructs.
Hypertension and diabetes mellitus were risk factors that worsen progression of CKD. Unemployment, lifestyle changes and limited social interaction were revealed as negative effects of CKD. Caregivers were aware of consequences of non-engagement with integrated management. The revealed positive benefits of integrated management were mainly physiological and system-related. Barriers to engagement with integrated management were side effects of diet and haemodialysis, hot weather, unemployment, false perception of good health and shortage of kidneys for transplant.
Chronic kidney disease patients require caregivers support to help with necessary changes to cope and adapt with integrated management of the disease. These caregivers experience effects of CKD, consequences of non-engagement and barriers to integrated management. Identification of caregivers perceptions offers healthcare workers a better understanding and formulation of strategies that can offer adequate support to this population.
Chronic kidney disease (CKD) is a slow progressive irreversible deterioration in renal function that results in the kidney’s inability to eliminate waste products, maintain acid base, fluid electrolyte balance and haemopoiesis. The prevalence is estimated to be 8% – 16% in all continents (Jha et al.
Common causes of CKD are diabetes mellitus and hypertension (Shailendranath, Ushadevi & Prashant
In addition to being a debilitating and disruptive chronic illness (Moran
Caregivers play a pivotal role as they offer support and this has shown to improve survival and quality of life (Revenson et al.
According to the South African context, admission of CKD patients to the integrated management programme in public hospitals, entails eligibility for a kidney transplant as dictated by the strict selection criteria (Guidelines for Chronic Renal Dialysis
Caregivers are in an optimal position to identify challenges of CKD patients in relation to their engagement with integrated management. A review of literature revealed that there is paucity of information about the perceptions of caregivers regarding engagement with integrated management of CKD patients and no studies have examined this concept in KZN Province, South Africa. Hence, this qualitative study was conducted to explore the perceptions of caregivers with regard to engagement with integrated management of CKD patients. Findings of this study may add important information to the literature regarding caregivers’ perceptions on comprehensive management of their respective CKD patients.
The Health Belief Model (HBM) identifies four main beliefs that can influence the management of CKD patients: perceived risk factors, perceived benefits, perceived barriers and severity of outcome of non-adherence (Becker
The purpose of the study was to explore the perceptions of caregivers regarding engagement with integrated management of CKD patients in selected public hospitals of KZN Province, South Africa.
What are the perceptions of caregivers regarding engagement with integrated management of CKD patients in selected public hospitals of KZN Province, South Africa?
Chronic kidney disease is a slow, progressive irreversible deterioration in renal function that results in the kidney’s inability to eliminate waste products, maintain acid base, fluid and electrolyte balance and haemopoietin. It progresses in five stages (Lowth
Integrated management is defined as the provision of person-centred treatment and care of chronic patients in which health services work with each other and the patient to ensure coordination, consistency and continuity through different stages of their condition (Integrated Chronic Disease Management
Engagement refers to actions that individuals must take to obtain the greatest benefit from the health services available to them. This focuses on behaviours of individuals relative to their health care that are critical and proximal to health outcomes rather than the actions of professionals or policies of institutions (Centre for Advancing Health Care
Belasco et al. (
A qualitative case study design was used in this study (Yin
The study was carried out at two public hospitals in Durban, KZN Province. These hospitals work collaboratively in the provision of integrated management for CKD patients. Moreover, they serve the population of the KZN Province including neighbouring provinces such as Eastern Cape and Mpumalanga. Therefore, focusing on these centres posed the likelihood of capturing caregivers of CKD patients from all three provinces of South Africa.
The study population consisted of caregivers of CKD patients attending the selected public hospitals in KZN Province at the time of the study. Caregivers, directly involved in the care of CKD patients at home, were included in the study. Each selected caregiver constituted a case. Furthermore, those who have cared for CKD patients for at least three months were included in the study, as they were able to give realistic perceptions regarding integrated management of CKD patients. Any minors in the form of caregivers were excluded from the study, because they were not able to give informed consent. Those who were not directly involved in day-to-day care basis were also excluded, because they would not able to give realistic perceptions of CKD patients with regard to their integrated management.
A purposive sampling method was used to select cases of caregivers that provided in-depth insights on their perceptions regarding engagement with integrated management of CKD patients. A guiding principle in adequacy of this qualitative case study was data saturation (Grove, Burns & Gray
Data were collected using a semi-structured interview schedule, namely perceptions of caregivers regarding engagement with integrated management of CKD patients. Face-to-face method was used to elicit responses from caregivers. The interview scheduled guide was developed from in-depth literature review using constructs of HBM (Rosenstock
Four measures of trustworthiness were identified for this study: credibility, dependability, confirmability and transferability (Polit & Beck
Data were analysed, using thematic framework in cooperating constructs of HBM (Miles, Huberman & Saldaña
The protocol for research has been approved by the Biomedical Research Ethics Committee (BREC) of the University of KwaZulu-Natal, South Africa (reference number: BE377/2014). Informed consent and participant authorisation were sought from the study participants.
Caregivers of chronic kidney disease participants (
Participant | Age | Gender | Marital status | Occupation | Monthly income |
---|---|---|---|---|---|
Caregiver 1 | 20 | Female | Single | Unemployed | Nil |
Caregiver 2 | 53 | Male | Married | Professional | R6000 – R10 000 |
Caregiver 3 | 48 | Female | Married | Unemployed | Nil |
Caregiver 4 | 38 | Female | Married | Unemployed | Nil |
Caregiver 5 | 44 | Female | Married | Unemployed | Nil |
Caregiver 6 | 45 | Female | Married | Unemployed | Nil |
Summary of the main themes and emerging themes from the qualitative case study findings.
Target population | Number of caregivers | Main themes | Emerging themes |
---|---|---|---|
Caregivers of CKD patients | 6 | Risk factors that worsen CKD progression | Hypertension |
Caregivers of CKD patients | 6 | Consequences of CKD | Unemployment |
Caregivers of CKD patients | 6 | Consequences of non-engagement with integrated management | Difficulty in breathing |
Caregivers of CKD patients | 6 | Benefits of engagement with integrated management | Improved lifespan |
Caregivers of CKD patients | 6 | Barriers to engagement with integrated management of CKD | Side effects of haemodialysis |
CKD, chronic kidney disease.
The literature was linked to the themes identified and reconstructing interpretations into something meaningful. This process was influenced both by the original research objectives and new concepts generated inductively from the data. The emerged themes were made into narrative passages and the findings emerged logically from the participants’ responses. Verbatim quotes were set as extracts and they were used to give the reader an idea of how main and emerging themes evolved during the process of data analysis in this case study. The main and emerging themes were the following: risk factors that worsen the progression of chronic kidney disease, consequences of chronic kidney disease, consequences of non-engagement with integrated management, benefits of engaging with integrated management and barriers to engagement with integrated management.
In this section, the researcher assessed the caregivers’ perceptions of risk factors that worsen the progression of CKD. All caregivers asserted hypertension and diabetes mellitus as the most common risk factors as expressed by the following excerpt:
‘Anyone with hypertension and diabetes mellitus has higher risk for problems of CKD. My grandfather had hypertension which later caused CKD. Now my father suffered from hypertension for years and then developed CKD’. (Caregiver 1, female 20 years)
Caregivers cited negative effects of the disease (CKD) on occupation, family life and social relations. Three of the caregivers mentioned that their CKD patients were unemployed, as they were finally boarded off on medical grounds of having the chronic illness after they had been on light duty for almost two years in their companies. This consequently affected their family life, as they were the breadwinners and ended up not fully providing for the families. Lifestyle changes were also highlighted by two caregivers, as the families had to adapt to new dialysis and dietary menus to accommodate CKD patient. Four caregivers verbalised travel restrictions with their CKD patients, as they had to attend dialysis sessions either on daily basis at home or twice a week at the hospital:
‘My father used to work but he was boarded off on medical grounds because of his condition. First, he was given light duties and off sick on days he was attending haemodialysis and this happened for about 1 year. After being dismissed on medical grounds, it affected us financially because there are still other two siblings to finish school’. (Caregiver 1, female, 20 years)
‘Our lifestyle changed when my husband was diagnosed with CKD because we had to adapt to dietary changes as we cannot afford to cook two meals each time we cook at home. Again, sometimes relatives die in rural areas and my husband cannot even go there due to the nature of the illness. I am always representing him as a wife. It is really difficult for other relatives to understand because they do not have knowledge regarding the nature of the disease’. (Caregiver 3, female, 48 years)
All caregivers felt that if a CKD participant does not engage with his or her integrated management, there are severe side effects that will, in turn, affect them. The cited consequences included difficulty in breathing, swollen lower and upper limbs, readmissions, abnormal blood results and additional treatment. One caregiver cited faster progression of CKD to late stages that require dialysis as expressed in the following excerpts:
‘I personally witnessed the consequences of not engaging with dialysis, medication and fluid intake of CKD. My wife was still in denial on initial diagnosis of the disease and she did not attend dialysis sessions for one week. She was drinking fluids unnecessarily not taking into consideration the recommended fluid intake. She started having difficulty in breathing and all the upper and lower limbs were swollen. I had to rush her to hospital for emergency care and she ended being admitted for haemodialysis to normalise the urea in the body’. (Caregiver 2, male, 53 years)
‘My child is still under monitoring and she has been there for 2 years. She has to actively follow her treatment as this will minimise faster progression of the condition to late stages which require dialysis’. (Caregiver 5, female, 44 years)
In this study, all caregivers believed that there are benefits to CKD patients of engaging with their integrated management. The highlighted positive benefits included improved lifespan, less complications, reduced hospitalisations and delayed progression to late stages of CKD. Moreover, all caregivers highlighted the automatic qualification of getting a kidney transplant for CKD patients on the programme. The following excerpts highlight the above:
‘Of course there are many benefits to CKD patients when they participate in their management. My father is still alive because he is always following his treatment orders. He is also on the transplant list. Since he stated haemodialysis, he has never been admitted to hospital due to complications because he tries to engaging with his treatment regimen though sometimes it’s difficult with diet and fluid’. (Caregiver 1, female, 20 years)
‘My daughter is still in the monitoring phase of CKD and she had tried to follow the recommended treatment and this has delayed the progression of the disease to later stages as she has been on the monitoring for 2 years now. And who knows, she might get a kidney donor soon’. (Caregiver 5, female, 44 year)
‘During haemodialysis, my spouse always had problems like low blood pressure, cramps, nausea and vomiting. When this happens, she does not finish the haemodialysis’. (Caregiver 2, male, 52 year)
‘My husband always has problems with diet. After eating the renal diet, he complains of nausea first and sometimes he vomits. Abdominal pain follows as well and sometimes diarrhoea’. (Caregiver 4, female, 30 years)
‘My husband is always complaining of loss of appetite because the renal diet is tasteless. Sometimes he feels like vomiting when eating the required food. He ends up eating our food instead of taking his’. (Caregiver 6, female, 45 years)
Hot weather: Hot weather conditions in the study area were cited as a barrier to fluid restriction by all caregivers of CKD patients as expressed in the following excerpts:
‘The most difficult management in patients with CKD is fluid restriction. This is because this area is very hot, so these patients are always thirsty and as such are tempted to drink more fluids to reduce their thirst’. (Caregiver 4, female, 38 years)
‘Fluid restriction is difficult especially if it’s a hot sunny day and this area is very hot’. (Caregiver 5, female, 44 years)
Shortage of kidneys for transplant: All caregivers stated that being in the CKD programme automatically qualifies CKD patients for kidney transplantation. Shortage of kidneys for transplantation was cited as a barrier to engagement with integrated management among CKD patients by all caregivers as expressed in the following excerpts:
‘Since my wife started CKD programme, we have been patiently waiting for the donor but it seems we will wait forever because so many CKD patients are still to get before us. This alone sometimes affects my wife and that’s why she does not actively engage herself in the so-called integrated management because she does not see the need if there is no hope of getting the kidney for transplant in the end’. (Caregiver 2, male, 53 years)
‘Kidneys for donation are scarce and my husband is still waiting for the donor. This thing of waiting sometimes makes him loose hope in his treatment and he ends up not engaging in any of the treatments given’. (Caregiver 6, female, 45 years)
Stress and false perception of good health: Three caregivers highlighted stress and false perception of good health as a barrier to engagement with integrated management among CKD patients. These were expressed in the following excerpts:
‘Though my father tries hard with his medication, haemodialysis, diet and fluid restriction, he sometimes feels depressed about the whole situation. He separated with my mother long back and this sometimes gets to him hard because he sees as if he is a burden to us. When he is in this situation, he does not take his meals normally and can even miss a haemodialysis session’. (Caregiver 1, female, 20 years)
‘My daughter is still urinating and sometimes drinks lots of fluid, not taking into consideration the recommended fluid intake because she perceives herself as stronger and getting better yet her kidney function is deteriorating. Another thing is that she is still young looking for a whole healthy future ahead but this condition sometimes stresses her and she ends up not following the recommended diet with an attitude of saying she will die anyway’. (Caregiver 5, female, 44 years)
‘My father is not working and neither am I. We are surviving on the medical grant and sometimes hand-outs from other family members. It is sometimes difficult to cook two meals at the same time as we cannot afford, so he sometimes joins whatever we are eating even if it’s not the recommended diet. Renal diet is sometimes expensive to us’. (Caregiver 1, female, 20 years)
‘My husband is not working; he got retrenched due to illness. I am not working as well and this sometimes becomes difficult for us, especially on recommended diet for him’. (Caregiver 4, female, 38 years)
The perceptions of caregivers with regard to integrated management of CKD patients were explored, using components of HBM. The structure used to discuss the findings was based on the model; hence, the headings were adopted from the components of HBM.
Perceived susceptibility refers to a person’s subjective perception of the risk of acquiring an illness or disease (Becker
Perceived severity refers to a person’s feelings about the seriousness of contracting a disease, leaving the disease untreated and leading to medical and social consequences (Becker
Caregivers revealed detrimental effects of CKD on occupation, family life and social relations. With regard to occupation, CKD patients were boarded off on medical grounds as cited by the caregivers. As a result, caregivers were affected, because their respective CKD participants were the previous breadwinners. These findings are corroborated by the results of Assounga et al. (
Lifestyle changes were also highlighted, as the caregivers had to adapt to new dietary and dialysis schedules to accommodate the CKD patients. The study findings are affirmed by Ghai et al. (
Caregivers verbalised travel restrictions to other distant places or social gatherings as CKD patients had to attend dialysis sessions either on daily basis at home or twice a week at the hospital. Dialysis patients can only visit for not more than two days unless they are to miss another session of haemodialysis and this negatively impacts engagement as well as social well-being of caregivers. Subhashini and Indira (
Caregivers highlighted consequences of non-engagement with integrated management of CKD patients. These included pulmonary and peripheral oedema, ineffective breathing, additional treatment and elevated urea and electrolytes. For those who were still under monitoring, non-engagement with their integrated management posed for faster progression to late stages of CKD that require dialysis. This confirms the findings in the literature by Assounga et al. (
Perceived benefits refer to a person’s perception of the effectiveness of various actions available to reduce the threat of illness or disease (Becker
Perceived barriers refer to a person’s feelings about the obstacles to performing a recommended health action (Becker
Physiological barriers in this study were related to gastrointestinal problems because of CKD and side effects of haemodialysis. These findings are similar to studies performed by Assounga et al. (
Nutritional and dialysis therapy in CKD forms part of the management of the condition and its goal is to minimise uremic and anaemia symptoms, reduce the incidence of fluid, electrolyte and acid base imbalances, decrease patient’s vulnerability to infections and limit catabolism (Morton & Fontaine
Psychological barriers are mind-associated problems and unhealthy thought patterns that keep individuals away from engaging with their integrated management (Marx
Socio-economic status depends on a combination of variables such as occupation and income. Caregivers cited socio-economic problems as barriers to engagement with integrated management among CKD patients. The socio-economic barriers were related to the fact that the caregivers and their respective CKD patients were unemployed. These findings are corroborated by the results of Assounga et al. (
Hot weather in the study area was cited by caregivers as a barrier to fluid restriction among CKD patients. These findings are corroborated by the results of Gerogianni and Babatsikou (
Shortage of kidneys for transplantation was cited by caregivers as a barrier to engagement with integrated management as patients have to wait for more years to find a donor, causing them to lose hope in their management. Chironda and Bhengu (
The face-to-face method for data collection might have introduced bias in the following manner:
There was interviewer bias through soliciting and interpretation of information from selected cases of caregivers. The researcher was careful not to allow prior knowledge of the diseases condition affect the way the interview was conducted. Information bias was present where the selected cases of caregivers might have given information that is considered to be desirable for the researcher to hear, though the information might not be necessarily a true reflection of their perceptions. This was quite possible, because the researcher introduced herself as a health care worker.
There was selection bias through the use of a hospital-based sample. Selected cases of caregivers consisted of those who could accompany CKD patients to renal clinic and renal unit. Systematic differences could exist in perceptions between those who could and those who could not make it to the renal unit and renal clinic during the study period. Nevertheless, the researcher tried to minimise selection bias through the use of three different caregivers who care for three different classes of CKD, namely haemodialysis, CAPD and non-dialysing classes.
Education of caregivers on risk factors that worsen the progression of CKD to the end of life should be emphasised, as all of them were not aware of all the risk factors. There should be continual education of risk factors of CKD for caregivers so that they will encourage quality healthy lifestyles among CKD patients and prevent further incidence of CKD among the healthy population.
Emphasis and introduction of awareness campaigns for organ donation should be provided to caregivers as they are the ones who stay in the community with the CKD patients. Kidney transplantation is the most effective way of managing and eradicating the CKD and this will ease the burden of caregivers.
Dietary restriction is an important part of comprehensive management of CKD patients and most of the caregivers verbalised unaffordability of the renal diet because of low socio-economic status. Therefore, the management should advocate for caregivers and liaise with Social Welfare Department to provide extra money for the diet in addition to the monthly medical grant given to the CKD patients.
Unemployment is a major issue among caregivers. In this view, the management should advocate sheltered employment to improve the socio-economic status of caregivers as well as CKD patients.
The findings of this study should be implemented and encouraged as this will promote evidence-based practice.
This article addresses the most important part of the nephrology science. Most of the time, the caregivers and/or guardians of the patients are not included in the care of their family member. Yet, caregivers are subjected to lifestyle changes that affect their physical, social, economic and psychological well-being. They are supposed to make daily decisions about engaging CKD patients in scheduled appointments, taking prescribed medicine, fluid and dietary restrictions as well as managing the symptoms of CKD and other comorbidities. The revealed perceptions of caregivers inform the need to devise strategies that can promote engagement of CKD patients with their comprehensive management.
This project received financial support from the College of Health Sciences, School of Nursing and Public Health of the University of KwaZulu-Natal. The research article was part of a PhD thesis towards the development of a framework for engagement of Chronic Kidney Disease patients with their integrated management to improve nephrology care.
The authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article.
Both authors have contributed to the development and writing of the article as follows: G.C. and B.B. were responsible for the study design, data analysis and manuscript writing. G.C. contributed towards data collection.