Social construction of the experience of living with chronic kidney disease

ABSTRACT Objective: To understand the experience of people living with Chronic Kidney Disease who have been transplanted, from the meanings constructed based on the experienced phenomenon. Method: Hermeneutic-phenomenological study based on the five lifeworld existentials, according to Van Manen’s theoretical framework. Eleven transplanted patients participated in the study and data collection was carried out through semi-structured interviews, after approval of the study by the Ethics Committee of the University of Antioquia. Results: The theme of Living with Chronic Kidney Disease emerged, and the subthemes were grouped as lifeworld existentials of Temporality: something unexpected, being present and not seeing it, being young and sick. Relationality: support, feeling stuck and Terminal Chronic Renal Failure. Spatiality: changes in life, sadness and depression. Corporeality: body deterioration and changes in sex life. Materiality: effects on the economic status. Conclusions: The care provided to people must be oriented in order to recognize their individualities, understanding what the illness means for the individual and his family, how they live with it and what the changes are, leading them to modify their lives and start a long process, such as living with a chronic disease.


Introduction
The main challenges faced by health systems are aging and chronic diseases. Among these, Chronic Kidney Disease is characterized by being a debilitating disease, caused by a gradual and progressive loss of renal function, which affects the person and his surroundings (1) . The number of people with Chronic Kidney Disease and Terminal Chronic Renal Failure continues to increase exponentially, being a public health problem that could reach severe epidemic proportions.
There are several important factors for its development, such as aging, cardiovascular diseases and type II diabetes mellitus, considered to be responsible for its increasing incidence (2) .
In 2010, more than 2 million people in the world were treated for this disease (3) . In the United States, during the year 2013, the incidence of people diagnosed with this disease varied from 6.3 to 9.2% (4) .
It is estimated that, by 2030, approximately 2.2 million people will require renal replacement therapy (5) . Several studies have addressed this phenomenon, including diet issues and changes in protein-calorie intake, which cause an increase in malnutrition during the initial stage of renal replacement therapies, leading to increased morbidity and mortality in these people (6) .
They also address changes in the patient's sex life due to hormonal changes, symptoms associated with the disease and dialysis treatment (7) and the importance of decision making in relation to treatment modality (8) .
Other aspects related to the effects on body image and to treatment, considered as a mechanism for surviving the disease (9) , and the difficulties regarding adherence to treatment (10) , such as experiences and religious practices contribute to decision making. The coping strategies used to assume the disease and dialysis (11) , as well as the coping strategies used to assume the treatment and keep trying to live despite the disease (1,12) , are important elements that involve changes in the patient's life.
Based on the ideas presented, in Nursing, it is important to care for the individual with Chronic Kidney Disease by applying a holistic approach built from the social dimension, in order to provide a discipline with an experiential and conceptual basis aiming at strengthening the professional practice, considering the experiences of people affected by the disease as its key aspects.
In this context, the objective of this study was to understand the experience of people living with Chronic Renal Disease who have been transplanted, from the meanings constructed based on the experienced phenomenon.

Method
The hermeneutic-phenomenological qualitative research method proposed by Van Manen was adopted, aiming, through face-to-face interviews, to reconstruct the meaning of the experience of people living with Chronic Renal Disease. The socio-personal environment was explored with the aim to identify key aspects that allow a deep understanding of their experience, and derive from the knowledge obtained, a set of strategies that allow improving the care provided by the nursing staff to people with this health condition.
The analysis was centered on the lifeworld existentials (13) : Relationality, it identifies the relationships that people maintain in their shared space, and leads to the reflection about how relationships can influence the perception of the phenomenon, recognizing common features in the other, the social components that give meaning to life (13) . Corporeality, it is the immersion in the corporeal world, things are consciously or unconsciously revealed or hidden in the encounters with other people, the body language changes during these encounters, it allows to identify how the body experiences, feels, perceives and manages the phenomenon (13) . Spatiality, it is interpreted as having Cartesian properties with universal coordinates and distances, and it is interested is in how space is felt and gives meaning to the phenomenon (13) , "the spatiality of man is something inseparable from his corporeal being … "grounded" in his corporeality" (14) .
Temporality, it is examined in relation to how time is experienced, and is correlated with a subjective time, the experience meanings are interpreted at a particular time (13) . Materiality, it concerns on how things are experienced (13) , and describes how "intramundane or useful bodies" (14) assign a meaning. The analysis was carried out according to Van Manen's method: reading and re-reading the interviews, searching and understanding the etymological roots, searching for emerging themes, lighting and illustration on the phenomenon, searching for common patterns, writing and re-writing centered on the lifeworld existentials (13) .
The following criteria were considered (16) : credibility and possibility of obtaining confirmation were achieved through textual transcription of the interviews by the researcher, and the results were reviewed by qualitative research experts and returned to the participants.
Regarding transferability, it is expected that the results of this study serve to find similarities or divergences with the findings of other studies addressing the phenomenon. from the perspective of the lifeworld existentials (13) . Figure 2 shows the relationship between the lifeworld existentials and the sub-themes, allowing to recognize that experience is a relationships network and not a series of events that take place during the life of human beings, which is consistent with the hermeneutical phenomenology. Next, these are described and illustrated with sections of the interviews. Family support. It is crucial to feel accompanied and protected, with the perception of being cared for. The intervention of the family at this stage gives them an impression that the problems diminish, helps them cope with the disease and facilitates the adaptation process.

Results
They recognize the participation of their family in the care of their diet, their economic and emotional support, as well as their participation in the treatment. In this way, they realize that the disease is not a process that is lived alone, but it involves all family members, making them indispensable pillars for the person to overcome the disease. and friends in the care of the disease, which helps them to carry on with their lives (21) , as well as the perception of the negative impact that the disease has on their family due to the treatment (24) .
The treatment, perceived as the central and essential axis of the activities of daily life, awakens in them feelings of dispair and anguish, which make them feel stuck in their own world (25) . They lose self-sufficiency, becoming dependent on others and treatment, and these restrictions, distress and limitations are perceived as "loss of freedom", which restricts their social activities (26) .
As for changes in life, sadness and depression, several studies show how people with Chronic Kidney Disease, especially young people, experience perplexity and denial in relation to their condition, leading them to develop negative thoughts about their lives (27) , and to express surprise, anger, indignation, isolation and depression due to the fact of having the disease (28) . Other studies show how the disease makes them unable to carry out their activities, dietary and fluid restrictions, as well as restrictions on their lifestyle, which represent factors that affect the balance between illness and normality, making them understand that their lives have changed (11) .
Regarding the body deterioration, there are studies describing the existence of an interaction between the ill body, the treatment and the work, which leads to changes in the abilities and needs of the "chronically ill body" (29) .
This deterioration exerts an influence on the lives of the patients and leads them to develop dependence, self-pity, depression and other alterations that produce an overload and a worsening in their quality of life (30) .
Chronic Kidney Disease and hemodialysis, mainly, significantly affect people's sex life, increasing the impact that the disease has on those who suffer from it (7) . The descriptions show how men and women experience the effects of the disease, and the loss of sexual interest associated with the disease and treatment, which is accepted with resignation (31) . In this sense, the presence of a catheter is perceived as a threat to marital relationships, becoming an obstacle in sexual relations (32) .
The findings of this review show that the symptoms of the disease have a negative influence on working life (31) . The disease itself produces an adverse economic impact, taking into account the time spent on treatment and the additional costs that patients must assume for doing so. Keeping their jobs allows them to meet their needs and feel fulfilled as a person, so they feel afraid of having to leave their job, because that means depending on their family or stop being the economic support for them (26) . Changing their working life brings them financial difficulties and, in many cases, they become disable and must be away from work, which represented a mechanism for them to feel normal in their lives (18) .

Conclusions
Chronic Kidney Disease appears unexpectedly, abruptly; it manifests over time and they recognize that there were signs that were underestimated because they could maintain their daily life. Young people have their social interactions impaired and are marked by a social stigma due to changes in their body image. The disease may cause body deterioration, which changes the patient's perception in relation to how this sick body is experienced.
The family and friend support is a way to move forward in life, which allows them to cope with the dependence caused by the disease and treatment.
There are changes that lead them to rethink their lives, feelings of depression, distress and fear appear; suicidal ideas can be associated with the loss of control in their lives; having support, affection and reflecting on this situation are important mechanisms to assume the disease with responsibility. The disease and treatment have effects on their economic situation; abandonment of work, dependence and increased economic burden leads them to lose the "normality" that they wish to experience in order to face the disease.
This study represents an important tool for the development of self-care models articulated with public health policies aimed at caring for people with Chronic Kidney Disease. It is based on the experience of people, on the subjectivity and meanings that these people build, moving away from the positivist paradigm centered on the disease, to focus on the care for human beings, authors and participants of their own reality.

Study limitations
This study shows interesting aspects for the understanding of the experience of people living with Chronic Kidney Disease; its limitation is related to the difficulty to generalize its results, although they may shed light on aspects that can be configured as similar in people living with Chronic Kidney Disease.