Research ArticleAbstract
Objective: To analyze the perception of quality of life of people with kidney
transplantation and kidney transplant candidates treated at the High Specialty Medical
Unit of Mérida.
Materials and Methods: qualitative study with interpretative phenomenological
approach, intentional sampling, the final sample was made up of 11 people with a
history of CKD: 7 candidates to receive kidney transplantation and 4 transplanted; data
were collected through semi-structured interviews conducted during their follow-up
consultations which were analyzed through content analysis.
Results: The categories analyzed were concept of quality of life with its domains:
physical, economic, family, and social. Most of the participants said that quality of life is
to be well physically, mentally, and emotionally, as well as to have all the basic services
and not depend on renal replacement treatments: dialysis or hemodialysis.
Conclusions: A perception of absolute quality of life or free of discomfort is
not achieved and human responses that require care and interventions to achieve
the highest level of well-being are still manifested. The construction of the concept
of quality of life includes physical, mental, personal, and social elements feasible to
document and in which to exercise interventions for the benefit of the people treated
and their families, it is evident that human responses do not only obey physiological
needs.
Keywords: Perception; Quality of Life; People; Kidney Transplant; Kidney Diseases. DeCS
Introduction
Chronic kidney disease (CKD) affects around 11% of the
population over the age of 20 globally, with an increase in
incidence in recent years [1]. Peritoneal dialysis, hemodialysis and
kidney transplantation are treatments that have been effective in
increasing the life expectancy of people with CKD [1,2]. In the last
three decades, the analysis of quality of life has been integrated as
an indicator of the evolution of health status in patients with CKD
to see beyond the number of years of survival. Quality of life is,
according to the WHO, “the perception that an individual has of his
place in existence, in the context of the culture and value system
in which he lives and in relation to his objectives, his expectations,
his norms, his concerns. It is a concept that is influenced by the
physical health of the subject, their psychological state, their
level of independence, their social relationships, as well as their
relationship with the environment.” This concept encompasses
objective and subjective aspects that reflect the degree of physical,
emotional, social and economic well-being of each individual. The analysis of the quality of life in people with CKD allows us to
understand the impact of the disease and its treatment, to know
more about patients, how they evolve and how they adapt to
organic alteration [3,4]. Currently, the analysis of quality of life
in people with CKD seeks to generate evidence, qualitative and
quantitative, to facilitate: the process of assessing human needs and
the implementation of quality interventions in the care sectors [5].
In the health sciences, phenomenological research, and those with
a qualitative approach in general, generate evidence that serves as
a guide to practice sensitive to the realities of the people to whom
care is directed, to their cultural diversity and to the contexts in
which their lives unfold [6,7].
In studies related to quality of life in transplanted people
and candidates for kidney transplantation, participants manifest
as the main human responses: recurrent hospitalizations,
uncertainty about the work situation, deterioration of body image,
deterioration of sexual functionality, dependence on third parties,
stress and guilt [2,8-12]. Specifically, people who are candidates
for kidney transplantation manifest as the main human responses:
anxiety and depression [13,14]. Transplanted individuals report
acute rejections, medication side effects, and emotional instability;
[12-15,16] immediately, after transplantation, they may perceive
release with respect to dependence on renal replacement therapy,
but as time goes by, they have to face various adaptation problems:
side effects of medications, medical and social complications, among
the latter the return to work, social and family life [12,16,17]. The
analysis of quality of life, with its respective components and human
responses in patients with a history of CKD is recent. Therefore, the
needs inherent in the nursing care process may go unnoticed when
directing care for people with these characteristics. Although there
are numerous studies that quantitatively address health-related
quality of life, [4,18,19] qualitative studies such as the present
one provides particular evidence to integrate it into the holistic
process of the nursing-patient relationship at different levels of
care [13,20]. Therefore, the objective of this study is to analyze the
perception of quality of life of people with kidney transplantation
and kidney transplant candidates treated at the High Specialty
Medical Unit of Mérida, to identify the related human responses
through an interpretive phenomenological approach.
Methodology
Design
A qualitative study was conducted with an interpretative phenomenological approach. From this design it is possible to reach the understanding of the experiences and the articulation of similarities and differences in the meanings and human experiences of people with kidney transplantation and candidates for kidney transplantation. Although it is not possible to make generalizations of the results of this study, particular data are reached with transferability to other populations with similar characteristics [6,7,14]. This article followed the COREQ [Consolidated criteria for reporting qualitative research] criteria to enhance its quality and clarity [21].
Study and Sampling Population
An intentional sampling was carried out, obtaining a final sample consisted of 11 people with a history of ERD: 7 candidates to receive kidney transplant and 4 transplanted, who received health services in the High Specialty Medical Unit of Mérida [UMAE] of the Mexican Institute of Social Security [IMSS]during the period from November 2019 to February 2020.
Data Collection
Data were collected through semi-structured interviews conducted during their follow-up consultations. Interviews lasted 30 to 40 minutes, were recorded in audio format, and field notes were taken. Table 1 presents the questions asked during the semistructured interviews.
Table 1: Semi-structured interview questions.
Ethical Considerations
The study respects ethical principles: beneficence, nonmaleficence, justice and autonomy. The research study protocol, with folio R-2018-785-129, was approved by the ethics committee of the High Specialty Medical Unit of the Mexican Social Security Institute. The testimonies presented herein are referenced with codes to safeguard the identity of the participants.
Information Processing
Semi-structured interviews were transcribed verbatim and then
analyzed using content analysis. This analysis process consisted of:
1. Encoding the data and establishing a data index.
2. Categorize the content of the data into meaningful categories;
and
3. Determine the topics related, in this case human responses, to
the previously defined categories [7,22]. In the results section,
tables are presented that allow to visualize the categories of
analysis delimited in Table 2 from Urzúa and Caqueo [23],
the human responses within the categories and, finally,
testimonies of the participants; all of the above accompanied
by interpretive narrative.
Table 2: Number, crude and age-standardized rate per 100,000 by sex and time during 2005-2014 in the Nghe An province.
Note: * Categories of the concept of quality of life from Urzúa and Caqueo.
Quality Criteria
Once the transcript of the interviews was completed, the 11 participants were asked to verify that the information interpreted was correct. Also the protocolization related to the organization of the data, the detailed and meticulous description of the selection of the sample and the context in which the study is carried out, facilitate the possibility of transfer and reproducibility of the same in similar conditions, thus providing another criterion of qualitative quality.
Results
Characteristics of the participants Years of age were a median of 37 [mean 39]and SD=13 in the 11 participants. In people who were candidates for RT, the median was 37 [mean 41]and in those with RT it was 35.7 years [mean 41), respectively. In the latter group two people were 6 months or less old after receiving RT, one was 1 year old, and one person was 10 years old. Table 3 shows that the majority of the total sample was made up of men who worked as employees.
Table 3: Sociodemographic characteristics of the 11 participants included in the study.
Quality of Life: Perception in Kidney Transplant Candidates
Table 4 shows the interpretations related to the categories: concept of quality of life with their respective domains: physical, economic, family, and social, then the identified human responses are presented. Most of the participants said that quality of life is to be well physically, mentally, and emotionally, as well as to have all the basic services and not depend on renal replacement treatments: dialysis or hemodialysis. In the physical domain, people highlight discomfort, pain and discomfort related to the procedures of renal replacement therapies or the body itself: chronic or bone pain, for example, these human responses largely condition the inability to enter the labor field. In the economic domain, the participants report that they are unable to carry out the activities of any employment due to physical disability, and therefore, consider that their monetary income from a trade or employment is limited, scarce or null. In addition, they stressed that the economic resources are focused on financing the management of the health itself: laboratory tests, transportation, extraordinary treatments, appointments, and medical consultations, among others; these efforts are complicated precisely by the lack of monetary inputs.
Table 4: Quality of life: perception of kidney transplant candidates.
Note: *Categories of the concept of quality of life from Urzúa and Caqueo.
In the family domain, people identify the importance of the support, care, and understanding they receive, received, and expect to receive from their family in the ups and downs related to their state of health and well-being. In this regard, some express feelings of feeling a burden for their relatives for the extra activities that the latter perform in health management, which generates tension and uncertainty. However, the interviewees expressed the motivation generated by their family environment: mothers, children and grandchildren, among other ties, drive the desire to want to get out of their problem and be patients waiting for the transplant. In the emotional domain, each of the people interviewed expressed their affectation at different points that leads them to present low self-esteem: fear, frustration, depression, sadness and uncertainty are some of the emotions they expressed among their testimonies. Participants follow a continuous coping process, because not every day they feel with all the energy and motivation to continue with everyday life. The emotional perception of the interviewees was reflected in their features during the interviews, they touched points that led them to cry, they expressed how difficult it is to live with a dysfunctional organ, the uncertainty before the latent complications that can even make them lose their lives.
Quality of life: Perception in People with Kidney Transplantation
Table 5 shows that most participants consider that quality of life involves physical, environmental and personal well-being as components. For one of the interviewees, it means no longer relying on external factors to sustain life; another considered that the longer he can extend his life is better for the quality of it, considered that discomforts are companions of life. In the physical domain, the interviewees expressed the freedom to perform various activities and eat food without affecting their quality of life. They expressed that they could move and travel without thinking about the need to carry too many supplies related to their treatment. They also stated that they can eat food without causing discomfort or altering their clinical parameters, especially water, which was previously restricted. In the economic domain, participants report that they have time and autonomy to build opportunities for insertion into trades, jobs and vocational or educational training. One case mentioned that the ability to acquire economic resources improves their quality of life, another participant reports that they can work freely without thinking about the times of some renal therapy, finally, a case refers that they returned to normal by fully taking these opportunities that they previously addressed discreetly.
Table 5: Quality of life: perception of kidney transplants.
Note: *Categories of the concept of quality of life from Urzúa and Caqueo.
In the family domain, the perception and feelings of being considered a burden on their families has decreased along with the amount of care related to renal replacement therapies from which transplanted participants are already exempt; people mentioned that despite the constant support of their relatives there was a physical distancing seeking to reduce the crossing of infections, a situation that in recent times has ended and they can share more time and experiences together. In the emotional domain, trust and emotional balance were interpreted in the participants. Two people mentioned that they feel they have a new opportunity before life, to restart it and have new experiences that they previously did not consider possible. Two people referred to the need to have confidence and know how to take the advice of health personnel: doctors and nurses. Finally, one participant described that he was overwhelmed by living a few days in isolation after his transplant, necessary to prevent infections, but at the same time accepts that it is necessary to improve his quality of life.
Discussion
The quality of life of people with a history of renal pathologies is
affected since the first clinical manifestations, the QoL in this sector
has shown deficiencies, low levels or areas of opportunity with
respect to the rest of the population [24]. Physical, environmental
and personal well-being are part of the conception of quality of
life in people with renal pathologies, whether they have been
transplanted or not. In the early stages of the disease there are
a series of negative perceptions of the disease and its mediate
and immediate quality of life that, ultimately, can influence their
coping actions, these perceptions can trigger anxiety, depression,
coping, autonomy, self-esteem and accelerated progression of
the disease [25]. In the identification of human responses in
patients with chronic kidney disease, the main physiological
risks related to this pathology have been highlighted. Farias et. al.
points out the overstating of biological and complication-related
human responses by nursing staff providing care to patients
with nephropathies in a renal center. Among 24 diagnostic labels
identified, the most frequent were “risk of infection”, “excess fluid
volume”, “hypothermia”, among others whose main domains were
located in Safety / Protection and Activity / Rest, on the other
hand, “low situational self-esteem” was ranked 16th in frequency
[26] corresponding to the Self-perception domain in the NANDA-I
[20]. The above shows what Spilogon et. al. points out as an area of
opportunity in the nursing process because it has the flexibility and
openness to consider the perceptions and preferences of the user,
in this case of the patient with nephropathies [27].
In the emotional category, low self-esteem was detected in
participants with CKD without transplantation, and that is that
a patient with CKD has needs for recognition and esteem, so the
people in charge of their care should promote favorable behaviors
in coping with the pathology and attachment to treatment, avoiding
judging and repressing the failures of our human condition [28].
In contrast, participants who had received a kidney transplant
manifested confidence and emotional balance, something that
could be considered normal after receiving the expected transplant
according to Tucker, et. al. [29]. From a quantitative approach
Rocha et. Al. point out that the higher the quality of life, the better
the assessment of the self-esteem of people with chronic kidney
disease after transplantation [30].
In the economic category, while people who had not received
kidney transplantation conceived the inability to enter the
workforce among their perception of quality of life, those who
had received kidney transplantation indicated greater time and
autonomy to build job and academic opportunities. Reports
indicate that patients with chronic kidney disease face many
barriers to staying or joining the workforce after starting dialysis:
limited opportunities, lack of financial resources to invest, fatigue
and other symptoms of kidney failure, potential loss of disability
benefits or medical follow-up, dialysis scheduling, and employer
bias. The societal perception that patients with CKD cannot work
completes a vicious cycle of low employment expectations [25,31].
In the family category, the perception of “being a burden” for
family members influences is an important component in the
perception of the quality of life of people with transplantation and
without kidney transplantation. Evidence indicates that family
members of patients with a history of renal pathologies manifest
sleep interruptions, depression, anxiety, among other disorders
associated with unforeseen responsibilities related to the treatment
and logistics of their relatives; they must also deal with insufficient
information, medication regimen and be accompanied by periodic
hospitalizations [32]. NANDA International classifies problems into
plausible diagnostic labels of interventions focused on promoting
the health of individuals, the family. and community, we can
mention: Risk of fatigue of the role of caregiver, Fatigue of the role
of the caregiver, Dysfunctional family processes, Willingness to
improve family processes, among others [20].
In the physical category, participants without kidney
transplantation are identified as a condition for quality of life, a
common and often severe manifestation in various populations
with CKD; with prevalence’s of 40% to 60% is a strong imperative
to establish the management of chronic pain as a clinical and
research priority [33]. In this regard, the labels acute and chronic
pain are available in NANDA-I [20]. Although pain and physical
limitation decreases after a kidney transplant, it is important to
mention that the physical and nutritional autonomy indicated by
the participants of the present can generate an excess of confidence
and the acquisition of unhealthy practices. Physical training
regulated by physiotherapy specialists appears to be safe in kidney transplant recipients and is associated with improved quality of life
and exercise capacity [34]. With respect to diet, the Mediterranean
and DASH (Dietary Approaches to Stop Hypertension) diets have
been shown to be the most beneficial dietary patterns for the
population after kidney transplantation by focusing on less meat
and processed foods, while increasing intake of fresh foods and
plant-based options. [35]. Knowledge and awareness in the renal
transplant population should be a cornerstone of therapy and an
integral part of nursing responsibilities. Therefore, nurses should
educate patients about self-care behaviors and remind them of the
dangerous complications of abandoning them [28].
In participants who had not received a kidney transplant, there
was an expectation of receiving a kidney transplant to improve
their quality of life and from it to improve their quality of life. In
this aspect we can mention the benefits before the expectation of
receiving a kidney transplant mentioned by Santos et. al. who in a
group of people with Brazilian nephropathies detected that patient
who were not waiting for transplantation were at risk of poor
quality of life, mainly in the emotional and physical aspects; those
who were not awaiting transplantation died more frequently in the
next 12 months [36]. However, betting on kidney transplantation
to improve the quality of life in patients with nephropathies is not
entirely recommended, in this regard we can cite the studies of
Schulz et. al. and Smith et. al. published in 2014 and 2019, [29,37]
who reported that before transplantation patients can overestimate
gains in quality of life without finding significant improvements in
quality of life after being transplanted.
Kidney transplantation is not a guarantee of improvement in
quality of life in all patients with nephropathies, in the present
study, those people who had received the kidney transplant did
not consider an absolute improvement in their quality of life. The
literature notes that kidney transplants can provide dramatic
improvements in quality of life and health status, however, the effects
on improvement are not universal and patients live in constant
uncertainty as they are aware of the likelihood of graft dysfunction
[29]. There are samples that have indicated that the expectation
about the functionality or rejection of the graft generates greater
fear and uncertainty than death itself [38]. The results on the
perception of quality of life in people receiving renal replacement
therapy support the trend of the last decade focused on the analysis
of this category beyond only assessing life expectancy [39]. The
limitations of the present are the risk of bias due to the same
interpretative approach and the inability to generalize the results
to the study population. To compensate for the above, criteria of
methodological rigor were followed and from a particular context
the search for generalities was made, reinforcing the results with
respect to other studies [21].
Conclusion
In transplant patients, a perception of absolute or discomfortfree quality of life is not achieved and human responses that require care and interventions to achieve the highest level of well-being are still manifested. The construction of the concept of quality of life includes physical, mental, personal and social elements feasible to document and in which to exercise interventions for the benefit of the people treated and their families, it is evident that human responses do not only obey physiological needs.
Conflict of Interest
No conflict of interest with any institution/organization.
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