Based on the verbatim accounts of the 15 participants, four themes and five sub-themes emerged. This includes: (1) Slow creep with the subtheme “Range of Experiences in Early Stage CKD.”, (2) Balancing Act of Hope and Uncertainty with subtheme “navigating a new reality,” (3) turning point with subtheme “contributory factors,” and (4) CKD progression patterns with subtheme “challenges managing CKD and “Hopes, Fears, and Living with Uncertainty. “Table 1 presents the demographic information of the participants.
Table 1
Demographic information of the participants. N = 15
Participant | Age | Gender | Diagnosis prior to CKD |
Participant 1 | 22 | Male | Diabetes Mellitus |
Participant 2 | 53 | Male | Diabetes Mellitus |
Participant 3 | 33 | Male | Obesity |
Participant 4 | 42 | Female | Diabetes Mellitus/ Glomeronephritis |
Participant 5 | 55 | Female | Diabetes Mellitus |
Participant 6 | 48 | Female | Obesity |
Participant 7 | 54 | Male | Smoker/ Diabetes mellitus |
Participant 8 | 49 | Male | Diet/ Obesity |
Participant 9 | 40 | Female | Obesity |
Participant 10 | 46 | Male | Hypertension |
Participant11 | 54 | Male | Diabetes mellitus |
Participant 12 | 36 | Male | Obesity |
Participant 13 | 48 | Male | Diabetes Mellitus |
Participant 14 | 54 | Male | Diabetes Mellitus |
Participant 15 | 28 | Male | Obesity |
Theme 1: Slow creep
The term “slow creep” indicates that CKD can progress quietly without causing significant ripples until it reaches more advanced stages. Therefore, there is a need for regular check-ups and an understanding of the possible risk factors. Chronic kidney disease (CKD) can sometimes be a sly devil with regard to time. In some participants, the early symptoms may be insidious. For instance, it is slightly more tired than usual and frequent night urination. These are often overlooked as normal events or attributed to different factors. Failure to recognize early symptoms of CKD may delay diagnosis and treatment, necessitating early intervention. That is;
Participant 1: Until now I have not had any though but learning about CKD has been a wake-up call for me regarding how I handle my health care decisions; henceforth am observant on my blood pressure levels and tend to drink a lot of water every day as prescribed by my doctor- this was what one participant said.
Participant 2: At 53 years old…Looking back, maybe I should have paid more attention when I started getting up two or three times at night just to pee…But then again, maybe it was just an age thing or something like that persons with poor memory have”.
Participant 3: As I read through this too and made connection with my present condition since my father had CKD, it felt obvious that I was at risk. It’s tough going mentally, but am trying hard to remain positive and proactive.
These initial reactions from participants showcase the varied ways individuals come to terms with CKD diagnosis in the early stages. This diversity of experience indicates that early stage CKD is experienced in a range of ways, thus emphasizing the complex nature of this stage in the disease trajectory.
Subtheme 1: The Range of Experiences in Early Stage CKD.
This subtheme demonstrates how experiences differ at different CKD stages. Some may have no physical changes, whereas others may only display subtle symptoms, such as tiredness and urination. Importantly, this theme recognizes that different responses occur under fear and hope depending on individual circumstances. As reported by the participants:
Participant 4: A little scared but also a bit positive. I have been told things that I can do to slow down, and I intend to do everything possible to stay healthy.
Participant 6: My CKD is still in its early stages, so there have been no physical changes. Emotionally, I am slightly worried about what lies ahead, but my main focus at the moment is on good health practices.
Participant 7: I slightly noticed some symptoms like fatigability, and I feel worried about what happens if I am unable to cope with an active lifestyle?
This shows how ill people experience the disease’s initial stages differently. Physical changes did not occur in some individuals, such as participant number six (Participant 6). Still, others, such as Participant 2, exhibit miniscule signs of illness formerly excused by old age. Additionally, this theme recognizes various emotional reactions to a life-changing diagnosis, including fear combined with hopefulness.
This variation in experience is parallel with Theme Two, which examines more closely the emotional rollercoaster that many patients face when they learn they have CKD- both hope for the future and anxieties to simultaneously coexist.
Theme 2. Balancing hope and uncertainty
This describes the journey taken by participants in situations where the future is unclear and stresses the importance of maintaining positive outlooks as well as realistic expectations about what one does not know.
Participant 15: Indeed, I am slightly frightened, but with some optimism. I have, however, resolved everything within my means so that I remain healthy and maintain a normal weight. Am not just fat but also obese.
Participant 12: So far, I have not had any physical changes yet because my CKD is still in its early stages. However, there are emotional uncertainties regarding the future that I am trying to overcome for my health’s sake.
Participant 1: No physical changes yet, but I worry about what happens next if I do not sustain this highly active lifestyle.
These thoughts from respondents explain Subtheme 2 ’navigating a new reality’. This was observed across different body conditions that all went along with each individual adapting to a new health situation due to CKD.
Subtheme 2: Navigating a new reality
While a different diagnosis can alter the course of life, it changes the way a participant comprehends their health and makes their future appear less bright by limiting their options. This theme refers to the circumstances under which people need to navigate. It is not just about accepting the diagnosis, but also how to move on with one's life by it. There is an emotional impact that must be dealt with: one needs to make adjustments to their day-to-day activities and seize control over what they can handle.
Participant 2: I find I get out of breath more quickly when climbing stairs, and my skin feels drier. Emotionally frustrating because most of the time I feel fine, but I know things could change.
Participant 3: Honestly, I feel mad. First, I asked myself why I had it? Instead, I focus on things over which I have some control, such as diet and exercise.
These reflections on adapting to physical changes and managing emotions point towards Theme 3 “Turning Point.”
Theme 3. Turning point
This aspect focuses on a decisive moment in the lives of patients with CKD when their views and feelings towards the illness have undergone drastic alterations. It is about moving from probably denying or being ignorant of how this ailment affected them to an active admission and maybe even dread regarding its worsening. The nature of this turning point can differ, such that it may be a particular sickness incidence or appointment with a doctor who has given worrying information or is just getting weakened.
Some participants had a significant shift in their perception, whereby they were diagnosed with (blood test results) or clearly told their possible implications (dialysis). The realizations made them suddenly more determined to take care of themselves and make healthier choices for their well-being. Commenting on specific moments that could be marked as crises in their journey through CKD. Some respondents lamented the following.
Participant 1: For sure, high creatinine levels in blood tests are extremely abnormal. Now I am determined to stop it from progressing further by listening to my doctor.
Participant 2: When my doctor explained the potential for dialysis because of my blood urea nitrogen (BUN) and creatinine increasing results, it scared me from making some serious changes.
Participant 3: My dad’s face changed when I informed him of my diagnosis. At that moment, I understood that I should act for myself and for my future life. To hear that I had CKD was shocking, it inspired me to make lifestyle modifications.
The turning point gave them a better understanding of CKD, leading them to take action. Altered conduct is a common result in various instances, such as healthy living or seeking evaluations on how to manage CKD. As the respondents’ narratives suggest, turning points are usually triggered by specific incidents or revelations. Subtheme 3: Contributory Factors critically examine these triggers by exploring the times when there was a change in comprehension and resolution to face CKD management.
Subtheme 3: Contributory factors
To prevent and manage this disease, it is important to understand the causes of CKD progression. Kidneys gradually fail over time, which is sometimes referred to as chronic kidney disease (CKD). While the cause may vary, various factors contribute to its development and advancement. In this subtheme, these contributing factors are discussed based on participants’ experiences.
Participant 5: I have type II diabetes mellitus, which I am managing with my doctor, so as to hopefully slow down how fast CKD develops.
Participant 10: I understand clearly that it is crucial for me to keep my blood pressure normal.
Participant 2: According to my physician, it could be a combination of diabetes and a family history.
Participant 9: In the past, I ate too much processed food and did not exercise often enough; I am currently working on changing those habits.
Participant 4: Sometimes, I struggle with urinary tract infections (UTIs). My doctor told me that this might have hampered the proper functioning of the kidneys.
Participant 6: This can put strain on your kidney since I weigh it more than necessary.
Participant 7: It was only after 15 years of smoking that I decided to quit thinking whether it was related to my earlier diagnosis of CKD this year.
Participant 8:I used to drink sugary sodas and eat fast food several times a week. Additionally, there was never enough time for me to exercise at any given time.
Theme 4. CKD progression patterns
This theme concerns the various ways in which chronic kidney disease progresses over time. CKD is a progressive condition, and its rate and manner of deterioration vary from person to person. Although CKD worsens over time, different participant experiences are shown. According to the participants:
Participant 14: My blood result shows an abnormal pattern I experienced this period when my kidney function was gradually deteriorating and I realized that I had to slow it down.
Participant 13: “I just do not want to start dialysis.” According to my doctor, there could be a steeper decline, possibly due to uncontrolled diabetes. This scared me when doctors told me about this, you know what… it was like a sort of waking up call for me not to cause further harm.
Participant 3: When my doctor predicted that major lifestyle changes might eventually stabilize me, my kidneys may not get any worse off for a while. “I can reach a point after some radical life style change;” my doctor explained; “whereby, even if I live on, my kidneys will not get worse.”
Participant 7: According to what my doctor told me, if I stopped smoking completely and lead a healthy lifestyle, I may see some slight improvements in health, sometimes even recover or reverse some damages.
Subtheme 4. Challenges in managing CKD
This subtheme discusses the many problems people with CKD face when managing their condition. These challenges underscore the need for a holistic approach to CKD management, which should not only focus on the physical aspects, but also cover the emotional and social well-being of individuals. Most respondents pointed out that making and adhering to healthier lifestyles were among the most formidable challenges they experienced. In addition, medical adherence and emotional impact of CKD diagnosis can be emotionally draining, with participants expressing feelings of worry, frustration, anger, and fear. Another obstacle is how one can maintain their emotions while having a realistic view of the disease and its progression as an individual faces this situation. That is;
Participant 8: The biggest hurdle is to completely change my lifestyle habits. It is hard to break old habits such as eating too much sugar, especially when I feel alright.
Participant 4: The hardest part was keeping up with the healthy diet plans. It is so tempting sometimes, particularly when you eat out with friends.
Participant 11: Me being one remembering all my medications, including doctor appointments, especially that I am diabetic.
Participant 14: Maintaining positivity without being unrealistic about what lies ahead.
Participant 10: I have not told many people yet, but I am talking to my close family for support; my doctor has been really helpful in explaining things and creating a management plan.
Subtheme 5: Hopes, fears, and living with uncertainty
This sub-theme explored participants’ emotions regarding the future progression of chronic kidney disease (CKD). This subtheme shows that living with chronic diseases such as CKD may become an emotional burden. This highlights the participants' desire for control and their anxiety about potential limitations and future health complications. Some participants described this as follows:
Participant 15: By following my doctors’ recommendations, I hope I will be able to keep it at bay for as long as possible. My greatest fear is that I would have to go on dialysis or have a transplant.
Participant 12: I hope that my CKD will not deteriorate to the point where dialysis is required.
Participant 13: I worry about losing my ability to travel and participate in activities I love.
Participant 5: Despite the presence of CKD in me, I hope that one day I can live long enough with it. What I am afraid of is that I do not know what is in the future for us with this kind of illness.
Hopes, fears, and living with uncertainty" underscored the significant emotional burden associated with chronic kidney disease. Participants expressed a desire for control over their illness and a deep fear of future complications, including dialysis, or limitations in their activities. The uncertainty surrounding their condition fueled their anxieties, highlighting the need for comprehensive support that addresses both the physical and emotional aspects of living with CKD.