Experiences of patients with end stage renal disease prior to and during dialysis therapy at greater Accra regional hospital

Abstract

: Hemodialysis affects the socio-economic status of patients with end stage renal disease (ESRD) resulting in a large number of psychological disorders for both the patients and their families. The purpose of this study is to explore the experiences of patients undergoing dialysis at Greater Regional Hospital in Ghana. The researchers employed a qualitative phenomenological research design using and analyzed using Interpretive Phenomenological Analysis. A purposive sampling technique was employed by the researchers to select 16 participants who were engaged in face-to-face in-depth interviews conducted. The socio-demographic characteristics revealed that majority were males (n = 11; 69%)and more than half of the participants (n = 14; 87.5%), were over 40 years. Again, most of the participants indicated spending between 150USD to 180USD weekly on dialysis treatment alone. The study revealed 3 themes and 13 subthemes emerged from the analysis of this data. The main themes were the Physical experiences of patients prior to starting dialysis, personal experiences during dialysis and socioeconomic burden on the participants. Participants faced challenges prior to and whilst on dialysis however the symptoms were better whilst on dialysis. It is therefore recommended that participants with ESRD are supported to go through dialysis treatment to enhance their quality of life.

Keywords:

• Experiences
• patients
• end stage renal disease
• dialysis
• hemodialysis

1. Introduction

Individuals with End Stage Renal Disease (ESRD) are exposed to varied challenges that significantly affect their social life affects significantly the social life most especially patients undergoing hemodialysis, causing changes in their daily habits and lifestyle (Gerogianni et al., 2014). Additionally, hemodialysis affects the employment status, social and economic status of patients with end-stage renal disease (ESRD) resulting in many psychological disorders for both the patients and their families (Gerogianni et al., 2014). End-stage renal disease is termed inadequacy of the kidneys to perform its functions by removing waste substances without kidney transplantation or dialysis (Wouk, 2021).

Asides from the psychological distress encountered by patients with ESRD, some physical symptoms have been documented by some authors in China as result of hemodialysis treatment. According to the authors, these symptoms increase in patients with low physical activity (Lou et al., 2019). Some authors have therefore recommended the need for future research to understand symptoms experienced by hemodialysis patients and the maintenance of quality life during hemodialysis (Bossola et al., 2019)

Some physical symptoms reported to be experienced by hemodialysis patients include tiredness, itching, thirst, bone and joint pain, and sleep disturbance (Alvarez-Ude et al., 2001; Davey et al., 2019; Li et al., 2018). They further found a relationship between the severity of the symptoms and being a female. Other physical and psychological symptoms unveiled by other authors were fatigue (94%), cramping (79%), body aches (76%) and feeling depressed (66%), worried (64%), and frustrated (63%; Flythe et al., 2018).

Moreover, some scholars have established a link between ESRD symptoms, and the socioeconomic status of individuals affected (Ng et al., 2021). End-stage renal disease places high socio-economic demands on patients affected Acquah, 2018). The author added that the direct cost of the disease increases as the disease progresses resulting in high financial costs on the family as well. Due to the high cost, some researchers in Tanzania unraveled that it has caused some patients from low- and middle-income countries to skip dialysis due to low economic status (Mushi et al., 2015).

Recent research conducted in Ghana among patients with chronic kidney disease revealed that the salaries were below (~USD 125; Tannor et al., 2019) and could not afford the cost of treatment. Sadly, the (NHIS) national health insurance scheme in Ghana does not cover hemodialysis treatment. Due to this, the researchers added that patients and their relatives solicit funds from the community, corporate organizations, and religious groups to enable them to go through with their hemodialysis sessions (Tannor et al., 2019). Not being able to secure funds may affect the disease progression and quality of life of the patients affected.

In Ghana, it has been discovered that living in a rural area is correlated with CKD incidence (Sarfo et al, 2021; Adjei et al., 2018). A study in Ghana also revealed that some patients undergoing dialysis report being depressed which affected their quality of life (Ganu et al., 2018). Some patients in Ghana with ESRD receiving dialysis in Ghana, recounted their willingness to receive kidney transplants despite the high cost (Boima et al., 2020). Literature on the treatment of end-stage renal disease, symptoms, and experiences is inadequate in Ghana (Boima et al., 2021). This study focused on understanding the symptoms experienced by patients with ESRD receiving dialysis and other challenges faced in a regional hospital in Ghana.

2. Methodology

Research design aids in collecting and analyzing data to gain an understanding into a phenomenon (Flick, 2004). The researchers, therefore, employed a qualitative research approach to understand symptoms experienced by patients with ESRD receiving dialysis. Qualitative research permit researchers to do an in-depth examination of the experiences of people (Hennink et al., 2020). It helps researchers to gain an understanding of the behaviors and beliefs of others. To allow a detailed examination of the personal lived experiences of the participants with regard to dialysis treatment, a phenomenological design was used. This design allows researchers to understand the meaning of the experiences to participants and make sense of that experience (Greening, 2019; Smith, 2011).

A purposive sampling technique was employed to help select participants. This is used when the researchers used their own judgment to select participants who possess specific qualities to be able to provide appropriate responses for the purpose of the research (Etikan et al., 2016). The target population was males and females adults receiving dialysis at the largest regional hospital in Ghana. The sample size was determined by saturation (Fusch & Ness, 2015) thus the point where the research did not retrieve any new information. Data saturation was reached at the 16th participant. All the study participants completed the study. The inclusion criteria were participants who have been on dialysis for 6 months or more since they may have enough experience concerning the phenomena, those who are 18 years and above, and those who were willing to share their experiences.

The researchers collected the data via face-to-face in-depth interviews with questions guided by a semi-structured interview guide which was designed by the researchers comprising both open-ended questions with probes. The semi-structured interview guide was self-designed and reviewed by all the authors based on the objectives and previous literature. The interview guide had 3 sections: Section elicited information on the socio-economic characteristics of participants (Age, sex, marital status etc.), Section B comprised questions on symptoms experienced by patients, and section C permitted patients to talk about other challenges asides from the symptoms experienced.

Trustworthiness or Rigor of this study was ensured. It is the degree of confidence or quality of the data collected (Connelly, 2016). Lincoln and Guba (1986) identified four criteria: credibility, dependability, confirmability, and transferability, and later added authenticity in 1994 (Cope, 2014). The trustworthiness of this study was ensured through prolonged engagement of the participants, conducting the study in accordance with the research objectives, peer review was done by all the authors of this study and other researchers, carefully conducting interviews till no new data was retrieved, detailed description of the design, the approach, the sampling technique and the data collection procedure, and verbatim transcription of the recorded data.

Ethical clearance was first obtained from the Dodowa Health Research Center Institutional Review Board (DHRCIRB 27/03/20) and approval was sought from administrators of the facility and the unit where the data was collected before beginning the data collection. After the clearance was sought, permission was sought from the hospital administrators and the unit heads who introduced the researchers to the patients. The purpose of the study was explained to them, and their consent were obtained verbally after which contacts of those who met the inclusion criteria and were willing to partake in it were taken. They were booked for a meeting at a time and place chosen by the participants where no other person was present. The participants were allowed to sign a written consent form during these days and were engaged in face-to-face interviews which were audio recorded with permission lasting for 50–60 minutes.

Data were analyzed using Interpretive Phenomenological Analysis. This analysis aims at interpreting the personal lived experiences of people in a systematic order (Demuth & Mey, 2015). There are six stages of Interpretive Phenomenological Analysis (Miller et al., 2018). These stages are familiarization, development of emerging themes, searching for connections, moving to the next case, looking for patterns, and interpreting into deeper levels. Prior to the analysis, the researchers transcribed the recorded data verbatim into a word document. The researchers had 16 different transcripts from the 16 participants interviewed.

Stage 1: The researchers then familiarized themselves with the data by reading through the transcript over and over to understand and become familiar with participants’ responses.

Stage 2: Following this, the researchers developed emerging themes by formulating concise phrases based on the responses in a form of notes whilst maintaining the meaning.

Stage 3: searching for connections. The researchers compiled all the themes, and identified relationships between the themes generated by finding which ones were similar and which ones contrasted with each other.

Stage 4: Moving to the next case. A similar process was done in all 16 transcripts to generate the final themes.

Stage 5: looking for patterns: The researchers critically analyzed the themes to help group themes based on the similarity of their patterns. The themes were generated into major themes and subthemes. In all three main themes and 13 subthemes were formulated in Table 2.

Table 1. SOCIO-DEMOGRAPHIC CHARACTERISTICS OF PARTICIPANTS

Variable	Frequency	Percentage (%)
Age Group (16)
40 years above	14	81.5
40 years below	2	12.5
Gender
Males	11	69
Females	5	31
Location/Residence
Outskirts of Accra	10	62.5
Within Accra	6	37.5
Educational Background
Primary	7	44
Senior High School (SHS) leavers	4	25
Tertiary	4	32
Religion
Christian	13	81.25
Muslim	3	18.8
Marital Status
1/2 happily married	8
Widowed	5	32
Divorced	3	19
Dialysis session per a week
Twice (150–180 USD)	10	62.5
Thrice (less than 230 USD)	4	25
Once (less than 100 USD)	2	12.5

Table 2. THEMES AND SUBTHEMES

THEMES	SUBTHMES
Physical experiences of patients prior to starting dialysis	Weight gain and edema of patient’s lower extremities Easily fatigue following physical exertion Breathing difficulties prior to initiating dialysis Anemia as a complication of ESRD
Personal experiences during dialysis	(5)Procedural pain complaints during hemodialysis session (6)Fear and anxiety about initiating dialysis and dialysis outcome (7)Altruistic attitudes of health care workers at the dialysis Unit (8)Diet modifications in patients diagnosed with ESRD (9)Discomfort during dialysis session and hemodialysis side effects
Socioeconomic burden of dialysis	(10)Extra cost during dialysis treatment (11)Inadequate dialysis unit (12)Financial support and work-related issues

The COREQ framework checklist was used to guide the presentation of this study

3. Results

3.1. Demographic characteristics of participants

Overall, 16 participants were engaged in this study, with the majority being males (n = 11;69%) and the rest females (n = 5; 31%). The age range was 30–65 years. The majority of the study participants (14) were over 40 years and over with the minority (n = 2; 12.5%) below 40 years. The number of dialysis sessions undertaken per week and the corresponding estimated budget were as followed; 10 patients (62.5%) were scheduled twice weekly spending between 150USD to 180USD on treatment costs, 4 participants (25%) who were coming for dialysis three times in a week and paying not less than 230USD. See, Table 1 for details.

4. Organization of themes

The study revealed 3 themes and 13 subthemes emerged from the analysis of this data. See, Table 2 for details of themes and subthemes

5. Physical experiences of patients prior to starting dialysis

Participants of the current study shared recounted the various symptoms they experienced as a result of their current situation and the challenges these symptoms have caused. Below is a detailed description of the challenges with their verbatim quotes.

6. Weight gain and edema of patient’s lower extremities

Individuals with ESRD usually present with weight gain and edema due to the kidney’s inability to excrete fluid from the body. It was therefore not surprising that the study participants had swollen extremities and weight gain as indicated below.

“Hmm, I woke up one morning only to find out that my feet are swollen and I went to the hospital. I was given some medications and it reduced small, so I was discharged home and then I started looking bigger again after some time so the doctor suggested that I begin dialysis”.

Joe (30 yrs)

“Two years ago, I wouldn’t know how to describe my structure. I was like four times as you see me now. My normal weight used to be 62kg but when I got sick, it gradually increased, I was weighing about 70kg”.

Serwaa(55 yrs)

“Before I started coming for dialysis, you could see I was puffy all over starting from my face, hands, and down to my toes. To some extent, when I pinch the back of my hand it left a hole”

Nkansah (43 yrs)

7. Easily fatigue following physical exertion

Energy is needed to carry out day-to-day activities and hence, decrease energy could affect this function. This was confirmed by participants of this study as they reported feeling tired with the slightest exertion during activities resulting from the condition.

“I was finding it difficult to walk around, not even for a shorter distance because I easily got tired so I was hospitalized for about three weeks at Koforidua hospital”.

Mensah (58 yrs)

“Truth be told; this disease took everything away from me in the sense that, it drained my whole strength and made me exhausted all the time. So at a point, I was not even going to work because upon doing something little, then I would be panting so I couldn’t even perform a simple task”.

Emma (48 yrs)

8. Breathing difficulties prior to initiating dialysis

ESRD diseases affect all the major vital organs due to the accumulation of metabolic waste and decrease blood supply to vital organs. This caused the participants diagnosed to have challenges with normal breathing before beginning their dialysis treatment.

“Hmm, it has not been easy for me at all, before I started the dialysis, I had problems with my breathing pattern, and you could see me gasping for air. In extreme cases, my wife even took me to the hospital where they will put me on oxygen for some time and I will be relieved”.

Gyamfi (57 yrs)

One participant explained how unpleasant it was to stay throughout the night because she was unable to sleep.

“I remember one night before I started the dialysis when I was all alone in the room, and I was unable to breathe properly. It was like, the air I was breathing was not enough, so I called a friend of mine who is a health worker. He advised me to add more pillows and it worked. I managed that night till I went to the hospital the next morning”.

Ramatu (53 yrs)

9. Anemia as a complication of ESRD

The kidney functions to produce erythropoietin which helps in blood production. As a result, damage to the kidney affects this function which predisposes patients to low RBC production. Findings from the study revealed that the majority of the participants were diagnosed of anemia by their physicians and treatment prior to commencing dialysis.

“I reported to the hospital for a review after my diagnosis and after I have gone through a series of laboratory tests, the results indicated that my blood count is low. So, the doctor prescribed tot’hema for me to boost my blood level up”

Joe (30 yrs)

“I seriously got sick one day and I was rushed to the hospital. The doctor after examining me asked if I have any concerns with blood transfusion and I said no. So he let the nurses transfuse me with 2 units of blood that day because he said my red blood cell was very low and after he advised me to make arrangements to begin dialysis since my condition was getting worse”.

Ramatu (53 yrs)

10. Personal experiences during dialysis

Asides from the clinical manifestations experienced by the participants, they also made known the challenges with the dialysis procedure, the fear in relation to the hemodialysis, and the concerns they had with diet modifications as described below. Nevertheless, they expressed satisfaction with the attitude of the healthcare providers at the dialysis unit.

11. Procedural pain complaints during hemodialysis session

Pain is discomfort associated with diseases, injury, and some medical procedures. The study found that the participants experienced pain as IV lines are being secured to commence hemodialysis.

“What I am doing now is hemodialysis and with this, the machine filters my blood through erm … a dialyzer, yeah. But firstly, an uncomfortable procedure is carried out. A needle is inserted in my body which my blood passes through to the machine and out of it and this is very painful especially, sometimes, the nurses will prick you severally”.

Joe (30 yrs)

“In fact, the procedure is very painful. Within the first few days, you will feel pains at the site of the injection. For instance, my veins are difficult to get and when there is a need for transfusion, I can be pricked about four times before my veins are accessed.

Adu (62 yrs)

Additionally, one other participant complained of having back pains due to the posture she has to assume in the course of the procedure.

“As you can see, we do not lie flat at our backs. We sit in a recliner which can only be adjusted, and by the time you are done with a session, you will have pains at your back and sometimes your waist”.

Mary (51 yrs)

12. Fear and anxiety about initiating dialysis and dialysis outcome

Fear is an emotional response shown when a person encounters a challenging situation and individuals in pain are usually anxious about the expectations of that challenging situation. Findings revealed that the majority of the participants reported feeling anxious when they were told to begin dialysis due to inadequate information and unknown outcome of the dialysis.

“In fact, I felt very bad hearing that I will have to start dialysis and even my wife thought I was going to die. I was worried every day even to the point where I was unable to sleep at night”.

Nkansah (43 yrs)

In a way, some of the participants had to adopt coping and defensive mechanisms to encourage themselves.

“Ever since I started coming for dialysis, I think a lot. I think about where to get money from, I’m even stressed and I fear this thing will send me to my grave but I’m a Christian and I believe God will see me through all of these”.

Mensah (58 yrs)

I understand the saying that, there is more to life than death and that is what has kept me going. I was very anxious for the first time because the procedure is a complex one but gradually, I am coping with the therapy”.

Darkoaa (52 yrs)

12.1. Altruistic attitudes of healthcare workers at the dialysis Unit

The findings of this study revealed that there existed a mutual relationship between the hospital staff at the dialysis unit and the patients they indicated being satisfied with the care and treatment provided whilst they were receiving dialysis.

“The nurses over here are very good, they know me, sometimes I come with no money but they do it for me on credit. Today, for instance, I have to pay for the previous session too because I did not have money then”.

Emma (48 yrs)

“I have been dialyzed here before where right after the procedure I stood up and left because I had no money to pay. But later when I got home I sent them mobile money to pay for the bill”.

Oppong (36 yrs)

“In fact, the nurses here, are very friendly, some of them even try to call me to check up on me and even remind me of my schedule days”.

Serwaa (55 yrs)

13. Diet modifications in patients diagnosed with ESRD

Nutritional change is one of the key components in managing chronic conditions to prevent complications and promote healing. Hence, participants in this study were restricted from eating some food substances due to the malfunctioning kidney, however, the study revealed that some participants were not happy with this change in diets.

“Previously, I used to eat whichever food I liked but it is not like that anymore. I am restricted from taking protein foods, some fruits like banana to eating more vegetables like cabbage and carrot which is considered to be expensive on the market”.

Ansah (40 yrs)

Other participants cited that they have been put on some food supplements

“Because of the loss of nutrients associated with the therapy, I now take food supplements and other vitamins like Vitamin C as part of my daily meal”.

Ofori (45 yrs)

14. Discomfort during dialysis sessions and hemodialysis side effects

Some of the study participants narrated the various side effects and discomfort experienced whilst receiving hemodialysis. These included headache, dizziness, failure of the machines, and the noise that comes out of it as the disadvantages of the therapy. The main issues identified with the machine are noise and infections

“In the course of the procedure, sometimes you’ll hear the machine beeping. When it happens like that, then you know it’s my BP which is dropping and sometimes too I have a headache what the nurses do is that they give me some infusions and I’m okay”

Gyamfi (57 yrs)

“I have not really had any problems unless ones that they said I have infections through the process but I was treated successfully.”

Ofori (45 yrs)

“I don’t see any difficulty staying on the machine. My concern is just with the noise the machine makes and sometimes the heat that comes out of it”.

Ramatu (52 yrs)

15. Socioeconomic burden of dialysis

Dialysis is one of the treatments that involve high cost and drain patients receiving finally since they have to undergo it thrice every week for the rest of their life. Subthemes that emerged were Extra cost during dialysis treatment, inadequate dialysis centers, and work-related issues.

16. Extra cost during dialysis treatment

Remarkably, the participants undertaking the therapy were not only faced with a high cost of the hemodialysis therapy but had to bear the extra cost of buying some supplements and blood transfusion.

“Medically, the nutrients that build your body, the potassium, calcium, whatever is in your body, even what makes your hair grow the machine takes it out. So that means you’ll have to buy a supplement for that. I buy supplements, like iron, erythropoietin, and those things which is also an extra cost”.

Nkansah (43 yrs)

“The doctor stressed the need for me to take supplements in order to replace the lost ones. If I had the money today, I would have bought 2 erythropoietin which would be GhC140 (9.86USD), and calcium that’d be GhC60 (4.22 USD) so apart from the dialysis those things will cost you not less than GhC300 (21.12)”

Oppong (36 yrs)

Sometimes, I come here and I would be asked to get blood for transfusion which costs about GhC200 (14.08) in addition to the bills I pay per every session of the dialysis”.

Fuseini (50 yrs)

17. Inadequate dialysis unit

It was brought to light at the end of this study that all the therapy centers were found in the teaching hospitals of this country and other few private facilities in Accra. Owing to this, the majority of the participants had no option but to leave their various regional hospitals all the way to Accra in order to undergo hemodialysis.

There is no dialysis unit where I come from and that is very bad because any time my schedule is due I have to travel for over 100 kilometers in order to reach here.

Ansah (40 yrs)

I wonder why there are no therapy centers in most of the regional hospitals. It would have been very easier for me to carry out this long-term therapy without coming here.

Mensah (58 yrs)

Sometimes, I wish I could stay with my grandson and daughter for a long when I visit them at Berekum. But I am unable to spend much time with them because there is no dialysis in the area where I can go for the procedure”.

Serwaa (55 yrs)

18. Financial support and work-related issues

Most of the patients did not deny the fact that they are only able to finance the therapy because they have supportive friends and family. However, they acknowledged that during hard times they skipped sessions.

“Some people help me with money and at first my brother used to drive me here every week so I was not worried about the cost of transportation”.

Emma (48 yrs)

“Frankly speaking, I get enough financial support for this therapy from friends and some relatives abroad and that is the only reason why I am able to do this twice a week without skipping any session”.

Gyamfi (57 yrs)

Some work-related issues participants were charged with included ineffective work ethics like lateness and absenteeism. Others were not going to work at all.

“If I get here early, around 6 am, I would be able to finish around 10 am and I can get to the office by 1 pm but today per se, I was unable to come here early due to traffic on the road and I can’t go back to the office when I finish because time will be far spent, this therapy has caused my boss to complain lately since I sometimes get to the office late”.

Nkansah (43 yrs)

Other participants reported that their condition has caused them to lose their jobs.

“I can’t go to work anymore, my work is hand to mouth and it involves strenuous activities. I used to be a mason but because of my condition, I cannot do these strenuous activities anymore so I have to stop”.

On the contrary, one patient claimed that though his present condition has affected his daily life activities, his work remains intact.

“I’m a banker and when it comes to issues like this, they put you on the medical erm. preference that you have this medical condition so every week, they excuse you to come for dialysis because without that, they know you cannot perform in the office”.

Joe (30 yrs)

19. Discussions

This section discusses the experiences of end-stage renal disease patients who were undergoing dialysis therapy at a regional hospital in Ghana. The key findings identified included the altruistic attitude of the health care providers in the unit, inadequate dialysis centers in Ghana, extra costs incurred by participants aside from the cost of dialysis, and symptoms experienced by participants.

20. Physical experiences of patients prior to starting dialysis

The present study ascertained how the study participants experienced pedal edema and an increase in body weight prior to beginning dialysis. A participant even shared how his body weight increased from 62 kg to 70 kg due to the edema. This supports a study by (Andreucci et al., 2001May, May) which showed that patients with ESRD experience edema due to the rapid leakage of fluid into interstitial spaces. Patients should be made known that the weight gain and edema were a result of the loss of kidney ability to function and that the hemodialysis is to correct this disorder in order to reduce their anxiety and ensure treatment adherence. This is because if left untreated it could lead to complications such as pulmonary edema and congestive heart failure, hence it was good that participants had already started dialysis and they were not experiencing themes symptoms anymore.

Fatigue was the most troubling symptom listed by participants prior to commencing dialysis. More than half of the total participants (n = 9; 56%) in this study reported reduced energy for activities. According to the participants, the fatigue affected their ability to walk, work effectively and perform simple daily tasks such as bathing and brushing their teeth. Some participants in this study recommended that their energy levels increased after beginning dialysis. Similarly, a study by Ann et al. (2008) in North Queensland revealed that patients with ESRD complain of fatigue. However, Letchmi et al. (2011) study established that patients undergoing dialysis reported some level of fatigue and hence recommended strategies to help relieve this symptom. Nurses should therefore pay attention to these symptoms reported by patients and find better ways of helping to solve them to help improve the health of these patients. It is also recommended that nurses assist patients undergoing this treatment to maintain self-care activities in order to reduce exertion which may worsen the patient’s condition.

Personal testimonies were shared by participants of this present study concerning how their dyspnea was relieved after initiating dialysis. Some shared instances where they were put on oxygen and advised to use pillows to elevate the head when lying. This supports the findings of Pierson (2006), whose study revealed that over 60% majority of the patients with ESRD presented with signs of breathlessness prior to starting dialysis treatment. This implies that a patient with this condition should be critically assessed for signs of respiratory distress for prompt intervention to be provided to prevent complications.

The current study findings revealed that some of the participants (n = 7; 44%) reported being told of having low hemoglobin levels prior to initiating dialysis. According to them, they were even managed with treatment such as tot’hema and blood transfusion due to anemia. A similar trend has been reported by several other authors including Mircescu et al. (2006) and Fishbane and Spinowitz (2018) who found that patients with ESRD undergoing dialysis sometimes experience anemia and hence recommended the need for iron supplementation to help prevent this problem. This phenomenon is consistent with the known pathogenesis of CKD which is erythropoietin production decreases as kidney function worsens. Hence, these side effects should be explained to patients with ESRD to keep them informed and also engage in activities to prevent this problem.

21. Personal experiences during dialysis

The majority of the participants (n = 13; 81%) in this present study opined that dialysis was a painful procedure involving pricking and back pain as a result of prolonged sitting. Recent studies have confirmed that pain is a common issue for patients treated with hemodialysis for ESRD. The experience of pain during dialysis treatment has not been studied more often in hemodialysis patients. However, Davison et al (2010) found that perception of pain was common in hemodialysis patients, although a substantial proportion of patients did not report pain during dialysis or on non-dialysis days. It is therefore pertinent for nurses to make them aware of these discomforts prior to dialysis therapy to prevent anxieties and skipping of dialysis.

Another personal problem reported by the study participants was related to psychological issues. These patients were particularly predisposed to heightened fear and anxiety due to a variety of factors such as economic pressures, insomnia, failure to play their roles in family and society, and decreased physical activities. This has been mentioned in a number of literature including that of Chen et al. (2010), whose findings presented that 74% of ESRD patients stated being anxious on their first day of dialysis treatment. Hence healthcare providers in these units are supposed to provide emotional and psychological care to these patients to prevent these issues from arising. There is also the need to provide information about dialysis to the general public.

Jhamb et al (2009) emphasized that support staff behavior was a powerful motivator for dialysis adherence. Interestingly, these investigators also suggested a positive interaction between healthcare providers and their patients. In the same vein, the majority of the participants (87.5%) in this present study acknowledged the fact that the healthcare personnel at the dialysis unit demonstrated a good attitude towards them including lending them money to pay for their dialysis, being friendly, calling to check up on frequent basis and been reminded of next schedule. This is a commendable attitude since it could promote adherence to dialysis therapy and promote a nurse-patient therapeutic relationship.

Also, some participants in this current study were instructed to make adjustments to their nutrition after being diagnosed with ESRD. The changes include a reduction in protein, increased fruit, and vegetables, and the addition of Vitamin C supplement prescription to the nutritional modification. The findings agree with a study by Kopple (2001) which recommended the need for protein restriction in patients with renal diseases to prevent complications. Food restrictions following diagnosis of some medical conditions affecting the heart and the kidneys are necessary to promote healing and to prevent further damage to the vital organs

In this study, it was observed that patients encountered issues in the course of the therapy. During dialysis, less than half of the participants had back pains, hypotension, and sometimes infection which is similar to an earlier study conducted by Odufuwa and Fadupin (2011), where all of the participants had vomiting, dizziness, and oliguria. However, a study by Kustimah et al. (2020) indicated that patients receiving hemodialysis usually pointed to muscle spasms, skin dryness and itching, and an increase or decrease in blood pressure. In contrast, findings from Mukakarangwa et al. (2018) showed that more than half of the ESRD patients on dialysis reported having no difficulty in being on the machine for the entire dialysis session. Hence, identifying and managing these challenges will enhance the effectiveness of dialysis and improve the quality of life of patients on dialysis.

22. Socioeconomic burden of dialysis

Besides the cost of undergoing dialysis therapy, participants in this study complained of incurring other extra charges due to supplements prescribed and erythropoietin to increase the hemoglobin level. Participants quoted an amount of GhC 60 (4.22) to GhC 200 (14.08 USD) spent in addition to dialysis costs on the other treatments. A study done by Suja et al (2012) shows that direct medical cost contributes 78.9% whereas indirect medical cost contributes 21.1% this finding is similar to a study done in India where direct medical cost contributed to 56.0% and the non-direct medical cost was contributed to 20.0% of the annual medical bill. This implies that participants need to be supported both in terms of the cost of dialysis and the indirect cost of other treatments aside from the dialysis cost.

Some participants (n = 6; 37%) recorded that they do not have dialysis units in their regions and districts and hence have to travel to other regions and districts to undergo dialysis. Participants in this study recommended the need for dialysis to be made available in all regions of the country as well as all regional hospitals to enhance participation and adherence to hemodialysis therapy. The study revealed that participants have to travel more than 100 km to dialysis units. In contrast, the findings oppose a study in Nigeria by Odufuwa and Fadupin (2011) which revealed that most participants (85.0%) living with ESRD travel less than 50 km to undergo dialysis. This could be attributed to the fact that Nigeria has a higher number of dialysis centers as compared to Ghana.

The majority of participants in this present study reported that they finance the dialysis cost and other extra costs charged with their personal monies, from the support of relatives, friends, and other loved ones but received no governmental support. In sharp contrast, a study conducted in Nepal by Mcgee et al (2018), revealed that all of the participants had gotten support from Nepal government for managing their dialysis costs. Free hemodialysis sessions were provided by the government of Nepal in 2016. Healthcare providers in this center should assess patients’ ability to afford treatment and help patients to identify another avenue to sponsor dialysis treatment.

23. Implications of findings for research and clinical practice

The current study finding will bring to bare the experiences of undergoing hemodialysis which will help other patients with this condition to know what to expect in order to reduce the anxieties anticipated. Moreover, due to the positive feedback from patients, nurses and other health care providers in this unit will be motivated to continue with this attitude of showing care and compassion to patients receiving dialysis. Moreover, the findings will inform governmental and nongovernmental institutions in the country to help provide more dialysis centers in both urban and rural areas.

24. Limitations

The study was limited to only patients and a single approach, hence future studies could explore the experiences of both nurse and family caregivers of such patients.

25. Conclusions

Participants faced several challenges prior to and whilst on dialysis however the symptoms reduced whilst on dialysis. Nevertheless, participants were worried about the high cost of dialysis treatment and the other indirect cost incurred whilst on dialysis. It is therefore recommended that participants with ESRD are supported financially, emotionally, and psychologically to go through dialysis treatment to enhance their quality of life.

Availability of data and materials

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Description of the Paper

There is a high prevalence of kidney failure in both even in young adults globally. Early diagnosis of renal diseases could lead to a good prognosis and quality of life, nevertheless, cases of kidney disorders are diagnosed late when the function has completely failed. Dialysis is one of the treatment options for renal failure. These treatments are not readily available, especially in low-resource countries. This study was therefore to understand the experiences of patients diagnosed with End Stage Renal Failure who were undergoing hemodialysis treatment. Most of the participants indicated spending between 150USD to 180USD weekly on dialysis treatment alone and 14.08 USD on other treatments such as blood transfusion. Other challenges identified included inadequate dialysis unit and anxiety prior to initiating dialysis. Nevertheless, participants testified that their symptoms improved after commencing dialysis therapy. Increasing knowledge on renal failure and dialysis could help reduce the incidence of renal failure and promote dialysis adherence.

Ethics approval and consent to participate

Ethical clearance was first obtained from the Dodowa Health Research Center Institutional Review Board (DHRCIRB 27/03/20)

Verbal and written consent were also attained from the individual participants before the data collection

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Notes on contributors

Evans Osei Appiah

Evans Osei Appiah He is a Registered nurse in Ghana with a BSc in Nursing from Valley View University Ghana, an MPhil in Nursing from the University of Ghana, and is currently a Ph.D. Candidate at Purdue University, USA. He has 14 publications in peered reviewed journals. His research interest is Qualitative studies, gynecological cancers, women’s health, and end-of-life issues. He has reviewed several papers for some reputable nursing journals and has co-authored one book.