Experience of Living with Chronic Kidney Disease

This report explores the experience of patients with chronic kidney disease, including the impact on family members and the importance in nursing practice. It discusses the prevalence and incidence of the disease, search strategy, critical appraisal of three articles, synthesis of findings, and lessons learned.

Running head: EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
Name of the Student
Name of the University
Author’s Note:

1
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
Executive summary:
The aim of the report is gaining an understanding of the experience of patients with
chronic kidney disease. The first section of the report has discussed the prevalence and
incidence of the disease with a brief introduction and outline of the disease. This section also
discussed the impact of the disease on family members and why it is important in nursing
practice. The second section of the report provided a concise idea of the search term and
databases for the research. The third section of the report critically analysed three articles
with the CASP tool. The fourth section of the report provided a synthesis of findings. Lastly,
the report provided the lesson learned from the research and application in clinical practice.

2
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
Table of Contents
Executive summary:...............................................................................................................1
Introduction:...............................................................................................................................3
Outline of search strategy:.....................................................................................................4
Discussion:.................................................................................................................................4
Critical appraisal of the first paper:........................................................................................4
Critical appraisal of the second paper:...................................................................................5
Critical appraisal of third paper:............................................................................................6
Key synthesis of the findings:....................................................................................................7
Similarity and differences:.....................................................................................................8
Reflection and application to the practice:.................................................................................8

3
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
Introduction:
With the growing prevalence of chronic health, chronic kidney disease has gained
importance in the recent era (Webster et al., 2017). Chronic kidney disease causes significant
morbidity and mortality worldwide and 661,000 Americans experience kidney failure every
year. As discussed by Bos-Touwen et al. (2015), the morbidity rate of chronic disease has
been increased up to 1.4 time’s in-between 1980-2013 around the globe and 2 million people
are diagmosed with CKD every year. While the high morbidity rate and rapid increase of
rate have been reported from low- middle to low middle-income countries of Asia and Africa,
the worldwide population is experiencing the consequences of chronic kidney disease
(Hanson et al., 2015). The risk factors such as High blood pressure, diabetes obesity,
autoimmune disease, or viral infections are the factors which facilitate kidney damage
(Scandling et al., 2015). In Australia, CKD affects 750,000 Australians where the majority of
the patient aged 50 years or above (Bos-Touwen et al., 2015). The most common symptoms
of kidney disease include itchy skin, dark urine, vomiting, and loss of appetite, swelling in
the hands and feet, chronic fatigue, and trouble in sleeping (Scandling et al., 2015). While
people with kidney disease can live a healthy life by treatment and modification of diet,
people with chronic disease are left with option of dialysis and transplantation (Hanson et al.,
2015). As discussed by González-Chica et al. (2016), while chronic kidney disease has a
direct effect on the quality of life of the patient, the family members are subjected to
remorseful experiences. The major impact on family members is that they are subjected to
psychological distress such as anxiety, trauma, and depression. Some of the family members
reported in different studies highlighted that they experience social exclusion, helplessness,
and stigmatizations (Zimbudzi et al. 2017). A significant number of the patient has been
subjected to severe financial loss. This topic has been extremely important in nursing
practices since they are the frontline health professionals who are responsible for the welfare

4
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
of patients (Brown et al., 2015). Previously family quality of life was neglected area of health
care where nurses and other health professionals use biomedical models of health and solely
focused on the physical aspect of illness (Sypek et al., 2018). However, since the origin of
experience of patients is the environment where they live, nurses are required to gain the
understanding of the experiences of patients and consider the social and psychological aspect
of health in order to provide accurate care and support the wellbeing (Sypek et al., 2018).
Outline of search strategy:
In order to gain an understanding of the experience of patients living with chronic
kidney disease, the most appropriate research design is qualitative study since it provides an
opportunity to the researchers to obtain underlying reason, opinions (Leung, 2015). The
research was conducted using diverse electronic databases such as CINAHL, PubMed and
Medline for obtaining three most suitable articles appropriate for critical appraisal. The key
search term for obtaining articles include “ chronic kidney disease”, “ experience of the
patient with chronic kidney disease”, “experience of the patient with chronic kidney disease
qualitative study”, “ chronic kidney disease qualitative study”
Discussion:
Critical appraisal of the first paper:
Burns, Fernandez & Stephens (2015), conducted qualitative research where
researchers have undertaken a systematic review of 12 paper, focused on the experience of
the patients with chronic kidney disease, especially the experience they experience while
dialysis and waiting for a renal transplant. As discussed by Leung (2015), the research design
is appropriate since it assists research to evaluate and summarize current knowledge. The
researchers included in-depth interviews, focus groups or ethnographic studied which is
appropriate to address the research question since these studies are rich in description of

5
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
experience of patients with kidney disease experience (Langlois et al., 2016). The researches
collected descriptive data based on the patient experience and assess the data using JBI-QARI
which is a suitable method of data assessment since Langlois et al. (2016),stated that a set of
the question of JBI-QARI enables researchers to evaluate the evidence to judge the
trustworthiness, values as well as relevance. The researchers used the same tool for thematic
analysis of the research which is a most suitable method of data analysis because. Langlois et
al. (2016), thematic analysis assists in in-depth analysis of large volume data and creating
themes appropriate for the study. Since it is a secondary study, researchers did not obtain
informed ethical permission. However, researchers accurately displayed the result of all the
articles in the form of themes which is quite appropriate. The key finds of the review
suggested that the majority of the patients with chronic diseases are struggling with the
experience of waiting for donor and during dialysis. Patients and family members
experience social inclusion and many of them experienced financial loss and helplessness.
Few of the patients realized that self- management and education is crucial in this stage but
they are unable to do so. The result of the study is extremely crucial since it will help
researchers to consider the social and psychological perspective of the patient while
designing interventions. The researchers considered all crucial outcome which can be
applied to the local population. However, limitation of the study is that the researchers only
analysed the report focused on experience and hence missed direct experience of the patient.
Critical appraisal of the second paper:
Cervantes et al. (2017), conducted a semi-structured interview on a focus group of
20 Latino patient with chronic kidney disease with the aim of gaining perception of patients
in haemodialysis in between February and July of 2015. As discussed by Leung (2015),
qualitative studies are suitable research design since it assists research to evaluate and
summarize current knowledge. The researchers recruited participants based on inclusion

6
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
criteria such as patients living with family, undergoing ESRD and receive thrice weekly
haemodialysis and devoid of other chronic diseases, English speaking. The data was
collected through semi-structured interview with open-ended questions which is an
approximate method since Leung (2015), stated that the semi-structured interview provide
researchers an opportunity to gain factual as well as emotional data based on the perception
of the participants. Moreover, field observation enables researchers to evaluate the perception
of participants. To assess the data, researchers conducted team based thematic analysis
model and transcripts were decoded by consensus approach further generated into themes.
The researcher obtained official approval from the local ethical committee then conducted
sampling. The finding suggested that the majority of patient experienced a lack of self-care
and family care, misconception, deprived of health care services, stigmatization, feeling of
being rejected by society, fear of Addiction and Damage to Body and relies on traditional
method of treatment. Lack of hope of getting rid of disease and living a healthy life. Although
study provided accurate results which can be used on the local population for gaining
accurate outcome, the limitation of the study is that the study only conducted on Latinos,
highlighted the homogeneity of the result. Moreover, because of stigmatization, a significant
number of patients were not comfortable to provide an accurate result and it is influenced by
cultural values which induces the possibility of gaining an inaccurate result.
Critical appraisal of third paper:
Sellars et al. (2016) had undertaken semi structure interviews of 39 participants with
the aim of gaining an understanding of the experience of professional as well as patients with
end-stage renal disease. As discussed by Langlois et al. (2016), qualitative studies are suitable
research design since it assists research to evaluate and summarize current knowledge. The
researchers recruited 39 participants from December 2014 to May 2016 and the interview

7
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
completed by 24 patients and 15 carer giver. To collect the data, researches used face to face
interview method which is an appropriate method since Langlois et al. (2016), suggested that
researchers an opportunity to gain factual as well as emotional data based on the perception
of the participants. The researchers did not mentioned the environment of the research
which is crucial for participants to feel comfortable which will facilitate the data collection.
To analyse the data, qualitative data management software HyperRESEARCH software were
used and drew from grounded theory. As discussed by Langlois et al. (2016), grounded
theory is accurate for the data collection since it takes the inductive approach to develop a
theory based on the perception of participants. The researchers obtained approval from the
local committee. The key findings of the study are that the patients with chronic kidney
disease often experience barriers in effective communication, lack of engagement in advance
care planning, discontinuity of care uncertainty and stigmatizations. They accepts the death,
blame health care professionals whereas few health care professionals provide accurate
treatment and few provides poor quality of care with lack medical transparency. The
limitation of the study is that since patients are recruited are English speaking, their
experience of care may be different from patients who speaks other languages. The detailed
exploratory study would be required to gain an accurate result.
Key synthesis of the findings:
After conducting a critical appraisal of the study, it is observed that while the result
of three articles is almost similar, variation in the findings is observed. Findings of three
journals (Sellars et al., 2016, Cervantes et al., 2017, Burns, Fernandez & Stephens ,2015)
highlighted that majority of the participants have the misconception regarding the chronic
kidney disease. Majority of the individuals with chronic disease such as experience sadness
and loss of hope regarding the cure of disease and living quality of life. While a significant
number of patients’ experienced stigmatized behaviour, rejection by society, psychological

8
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
distress such as anxiety, depression, and failure of rejecting by society, few patients believes
in traditional practice and few changed lifestyle by eliminated highly risky behaviour. While
a considerate number of the patients are living painful life, stop seeking health behaviour,
acquire negative attitude towards society because of the disease, few patients involve
themselves in spiritual activities and appreciate life more than before. Hence, the perspective
of the patient with chronic kidney disease varies depending on personal values, beliefs, and
the environment.
Similarity and differences:
The similarity of findings of these three studies is that majority of the patients with
chronic kidney disease experienced the psychological distress such as trauma, fear, anxiety,
and depression which disrupted the quality of the life and they have developed a negative
attitude of life.
Dissimilarity between studies is that while findings of the research undertaken by
Burns, Fernandez & Stephens (2015) suggested that majority of the patient experienced lack
of self-care, helplessness, the findings of study by Sellars et al. (2016), suggested that they
experienced lack of engagement in advanced care and lack of communication and medical
transparency with health care professionals. On the other hand, a study by Cervantes et al.
(2017), indicated that patients have both positive and negative experience from life.
Reflection and application to the practice:
After exploring diverse types of qualitative research, I have gained the understanding
that patients who are suffering from chronic kidney diseases have experienced an array of
psychological distress. The unpredicted nature of the kidney disease subjected them to the
uncertainty for which they were not prepared for. Previously I was unaware of the
knowledge that the disease not affected the patients but also it has a strong impact on the

9
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
quality of life of family members. After investigating through literature I have gained the
understanding that patients become financially dependent on family members, develop
mental illness, and start questioning self-worth, experience low mood, sadness, and family
members experience social isolations, lack of empowerment, low self-esteem. I have gained
the understanding that family members and environment play a crucial role in the wellbeing
of the disease and they receive inadequate care from health professionals. After capturing the
unique experience of patients with chronic kidney disease, I will focus on nursing
interventions which support the wellbeing patients by incorporating family members. I will
strengthen the communications with other health professionals to facilitate their involvement
in providing the best possible care to the patient. I will involve in the nursing educations
program which includes comprehensive physical and psychological assessment of patients
and will encourage my co-workers for involvement. I will identify as well as promote support
services and resources available to the patients, be mindful of patient-friendly
communication and discussed wider circumstance to empower individuals. I will provide
raise awareness to increase public understanding of the kidney disease and dispelling myths.
By applying these strategies I would be able to provide a better life to the patients who are
experiencing consequences of chronic kidney disease.

10
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
References:
Bos-Touwen, I., Schuurmans, M., Monninkhof, E. M., Korpershoek, Y., Spruit-Bentvelzen,
L., Ertugrul-van der Graaf, I., ... & Trappenburg, J. (2015). Patient and disease
characteristics associated with activation for self-management in patients with
diabetes, chronic obstructive pulmonary disease, chronic heart failure and chronic
renal disease: a cross-sectional survey study. PloS one, 10(5), e0126400.
Brown, M. A., Collett, G. K., Josland, E. A., Foote, C., Li, Q., & Brennan, F. P. (2015). CKD
in elderly patients managed without dialysis: survival, symptoms, and quality of
life. Clinical Journal of the American Society of Nephrology, 10(2), 260-268.
Burns, T., Fernandez, R., & Stephens, M. (2015). The experiences of adults who are on
dialysis and waiting for a renal transplant from a deceased donor: a systematic
review. JBI database of systematic reviews and implementation reports, 13(2), 169-
211.
Cervantes, L., Jones, J., Linas, S., & Fischer, S. (2017). Qualitative interviews exploring
palliative care perspectives of Latinos on dialysis. Clinical Journal of the American
Society of Nephrology, 12(5), 788-798.
González-Chica, D. A., Mnisi, Z., Avery, J., Duszynski, K., Doust, J., Tideman, P., ... &
Stocks, N. (2016). Effect of health literacy on quality of life amongst patients with
ischaemic heart disease in Australian general practice. PloS one, 11(3), e0151079.
Hanson, C. S., Chadban, S. J., Chapman, J. R., Craig, J. C., Wong, G., Ralph, A. F., & Tong,
A. (2015). The expectations and attitudes of patients with chronic kidney disease
toward living kidney donor transplantation: a thematic synthesis of qualitative
studies. Transplantation, 99(3), 540-554.

11
EXPERIENCE OF LIVING WITH CHRONIC KIDNEY DISEASE
Langlois, E. V., Tunçalp, Ö., Norris, S. L., Askew, I., & Ghaffar, A. (2018). Qualitative
evidence to improve guidelines and health decision-making. Bulletin of the World
Health Organization, 96(2), 79.
Leung, L. (2015). Validity, reliability, and generalizability in qualitative research. Journal of
family medicine and primary care, 4(3), 324.
Scandling, J. D., Busque, S., Shizuru, J. A., Lowsky, R., Hoppe, R., Dejbakhsh‐Jones, S., ...
& Turnbull, B. B. (2015). Chimerism, graft survival, and withdrawal of
immunosuppressive drugs in HLA matched and mismatched patients after living
donor kidney and hematopoietic cell transplantation. American Journal of
Transplantation, 15(3), 695-704.
Sellars, M., Clayton, J. M., Morton, R. L., Luckett, T., Silvester, W., Spencer, L., ... & Tong,
A. (2018). An interview study of patient and caregiver perspectives on advance care
planning in ESRD. American Journal of Kidney Diseases, 71(2), 216-224.
Sypek, M. P., Clayton, P. A., Lim, W., Hughes, P., Kanellis, J., Wright, J., ... & McDonald,
S. P. (2018). Access to waitlisting for deceased donor kidney transplantation in
Australia. Nephrology.
Webster, A. C., Nagler, E. V., Morton, R. L., & Masson, P. (2017). Chronic kidney
disease. The Lancet, 389(10075), 1238-1252.
Zimbudzi, E., Lo, C., Ranasinha, S., Kerr, P. G., Usherwood, T., Cass, A., ... & Zoungas, S.
(2017). Self-management in patients with diabetes and chronic kidney disease is
associated with incremental benefit in HRQOL. Journal of Diabetes and its
Complications, 31(2), 427-432.