id 28332

ORIGINAL RESEARCH

 

Changes in the daily life of people with psoriasis

 

Tatiana Nunes GuerreiroI; Ivaneide Leal Ataíde RodriguesII; Laura Maria Vidal NogueiraIII; Marune Melo TávoraIV

I Nurse. Specialist. State University of Pará. Brazil. E-mail: tatiana_guerreiro@outlook.com
II Nurse. PhD. Adjunct Professor. State University of Pará. Brazil. E-mail: ilar@globo.com
III Nurse. PhD. Adjunct Professor. State University of Pará. Brazil. E-mail: lauramavidal@gmail.com
IV Nurse. Master. State University of Pará. Brazil. E-mail: mm.tavora@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2018.28332

 

 


ABSTRACT

Objectives: to identify perceptions of psoriasis and changes in daily life among people with the disease, and to discuss these in order to contribute to coping. Method: in this qualitative study, data were collected by individual interview, applying a semi-structured script to 25 patients of both sexes receiving care at an outpatient dermatology clinic in Belém, Pará, and were treated by thematic content analysis. The project had research ethics committee approval. Results: the themes identified, showing that psoriasis has implications in several dimensions of patients' lives, were organized into two categories: The meaning of psoriasis and Psoriasis and its implications. Conclusion: the day-to-day repercussions go beyond biological consequences, requiring reorganization of routine activities and personal and social adaptation, and thus entailing a more comprehensive, multi-professional, bio-psycho-social approach to coping.

Descriptors: Psoriasis; quality of life; psychological adaptation; community health nursing.


 

 

INTRODUCTION

Psoriasis is a chronic, noninfectious, inflammatory skin disease with periods of exacerbation and remission of symptoms. It has a universal occurrence and affects approximately 1 to 3% of the world population, affecting men and women alike1. Dermatological diseases, especially chronic ones, bring losses in the quality of life of the affected individuals, as they limit routine activities and cause feelings of loss of vitality. They are perceived as a stigma by the individual, who feels ashamed and rejected by others. This may result in significant impacts on social relations, self-image and self-esteem, differently from non-dermatological diseases2.

Of the various dermatological diseases that affect the life of individuals, psoriasis stands out because it involves superficially visible lesions, implying profound psychosocial consequences and a significant deprivation of daily and social activities.

This study aimed to identify the perception of psoriasis patients about the disease and the changes in daily life, and discuss these aspects to contribute to their coping.

 

LITERATURE REVIEW

The clinical manifestation of psoriasis involves lesions in the form of scaly and erythematous plaque or papules, classified as mild, moderate or severe depending on the extent of the lesions. The size and number of plaques are variable. They can appear in any age group, with peaks of incidence in the second and fifth decades of life3.

The origin of these lesions is not fully understood, but they present typical phases of exacerbation and remission. Although the cause is little known, the disease is associated with genetic predisposition and its onset depends on exogenous stimulus. There is no single trigger; a series of events may lead to its clinical expression3,4.

The impact caused by a dermatological condition can be measured by recognizing the skin as the largest human organ. The skin is described as the first interface with the environment, translating physical sensations and even feelings ascertained when the individual shivers, turns pale or blushes in situations that cause inhibition, shame and anxiety. It acts as a mirror of the functioning of the body and each of its aspects - color, texture, humidity, among others - reflects the psychological and physiological state of individuals5,6.

The skin is highly sensitive to emotions when affected by pathologies, commonly causing negative repercussions in the person's life. Therefore, the extent to which dermatoses signs and symptoms interact with the feelings, emotional states and social relations of individuas and how they interfere with their daily life has been discussed.

 

METHODOLOGY

Descriptive, qualitative research aimed at discussing meanings, beliefs and attitudes, understanding these human phenomena as part of social reality7.

The study was developed at the dermatology referral clinic of a Teaching Health Center in Belém through individual interviews between August and October 2015 with 25 patients diagnosed with psoriasis. A semi-structured script addressing aspects about the disease, its repercussions in daily activities, in the personal context and in social life was used. Patients diagnosed for at least 6 months and on regular treatment were included. The absentees from outpatient control, regardless of time, were excluded from the sample.

Participants were given the Informed Consent Term and indentified through codes, with the letter I indicating interviewee and the sequential number of interview (eg.: I1, I2, I3).

The data were treated by content analysis8, obeying the steps of the technique. The recordings were transcribed as the corpus and subjected to exploratory reading to identify the most frequent subjects in occurrence and co-occurrence. The themes were grouped in order to meet the objectives of the study, allowing the organization of two categories: The meaning of psoriasis and Psoriasis and its implications. The latter had three subcategories: physical, psychosocial and family implications.

The Resolution 466/129 was observed and the study was approved by the Research Ethics Committee of the State University of Pará, CAAE 45059215.3.0000.5170.

 

RESULTS AND DISCUSSION

The profile of the participants showed a predominance of women (60%), in the age range of 48-56 years (48%), Catholic (72%), with high school (40%), married (56%),with a time of diagnosis of 10 years (60%); 88% of the participants were inserted in the labor market 12% had no occupation due to the limitations caused by the disease.

The meaning of psoriasis

Here we discuss the perceptions and explanations of the participants about the beginning of the disease and its aggravation.

For them, the influence of psychological factors and stress was paramount both in triggering and in aggravating the disease. The awareness of the possibility of treatment, the chronic nature of the disease, the possibility of genetic/hereditary influence and the idea of ​​contagion were also mentioned:

They used to believe that the disease was only triggered by stress. But today, it is scientifically proven that it is genetic; it is triggered by various things, stress is the main thing. (I7)

It is a disease that no one can explain, they only know that it is basically related to the emotional aspect. It has control, there is no cure. (I14)

The onset or worsening of lesions due to emotional factors has been attributed to the fact that stress influences the inflammatory and proliferative processes of cells in psoriasis, which would possibly be the trigger for immune-mediated reactions1. Psychological stress interferes with the severity of the disease and the efficacy of the treatment. Reducing this kind of stress is important for clinical improvement. However, the illness and the treatment can cause disfiguration and become stress generators, reflecting both the inner and outer aspects, making it difficult to deal with the disease and hindering therapeutic management by professionals.

In this study, the participants pointed out the impact of stress on the course and treatment of the disease, and the usual difficulties and anxieties caused by living with such a chronic pathology. These situations are:

[...] when I received the diagnosis it seemed that I had lost direction, they sent me to a doctor, he scared me a lot, he showed me a book where people appeared like 'peeled'. (I25)

[...] the doctor told me at the first consultation: this disease is psoriasis. I felt lost, I had heard that this was a disease that had no cure and made the skin look ugly, and I was very vain. (I13)

There are many uncertainties about the repercussions of chronic diseases on people's daily lives and the efforts invested in the reorganization of activities, the patients' perspectives for adaptation to their condition, or even mechanisms to deal with possible stigmas generated in certain diseases10,11. Therefore, the diagnosis is permeated by feelings such as sadness, anguish and reluctance, because psoriasis carries with it an stigma even before the manifestation of the typical skin disfigurations.

Information about the pathways that the disease usually involves an accumulation of negative meanings. The coping with chronic diseases goes beyond the understanding of biological mechanisms. The fact that the etiology of psoriasis is not well known even by scientists makes the coping with the disease more difficult, causing distress to patients who seek explanations/justifications for their illness. Some people bring the reasoning to the religious context, attributing the disease to divine punishment:

[...] sometimes I cried, 'It's not possible, Lord, that this came to happen to me, what have I done to deserve such a disease? (I2)

I was very vain, I say to myself: God gave me this disease to take away some of my vanity. But it makes us sad, very sad! (I8)

The religious connotation of sin, described as the guilt for some misconduct or for vanity which is understood as a sin to atone, is frequent in situations of illness due to pathologies that bring pain and suffering. In such cases, God and His designs are responsible for people's lives. In this study, 24 participants declared themselves to have a religion. Probably because of this, in the absence of an explanation with scientific logic, they rely on religious explanations to understand and accept their state. A study about the correlations between health and spirituality in the field of chronic diseases described the search for religion both to explain the illness and to face the adversities imposed by the disease12.

Religiousness is strongly tied to fear of punishment for acts that violate the religion's rules coupled with the tendency to believe in a superior being can strengthen people in the face of difficulties11. In this context, religion collaborated to overcome difficulties related to psoriasis, working as a reassurance against situations where the expectation of improvement is lost:

[...] I believe very much, that one day I will be well, 100% well. The doctor says that there is no cure, but for God, nothing is impossible. (I13)

[...] through God. He can heal me to show to many people in the church that he is God [...] one day He revealed it to me, that I would be healed. (I19)

Despite their understanding that the disease is not contagious, the idea of ​​contagion is present in the speeches because there is always a concern that other people think of contagion when they see the appearance of their skin. They vehemently state that psoriasis is not contagious and they show concern in telling people that the disease is not infectious. This clarification is important for fear of rejection or because they have experienced at some point, often in the period of exacerbation of lesions, situations in which they suffered social discrimination:

I explain that it is a psychological disease, not contagious. Exactly to make me feel better, because of people's curiosity about the disease. (I1)

It is not a contagious disease; it is a disease that results from stress. (I15)

Visible skin lesions are experienced as something that destroys one's image of beautiful and healthy, something that can cause repugnance, feeling of dirt and fear of contagion, and should therefore kept distant. The negative reactions of others to the unpleasant aspect of the lesions is assimilated as a factor of great impact. The experience of rejection may lead to a negative perception of body image and to avoid people and fear the possible exposure of the body13-16.

Psoriasis and its implications

It is understood that psoriasis causes implications and repercussions on daily activities, limiting or even preventing them16. The participants reported that the illness had had negative effects on their lives and, after diagnosis, they had to change or stop carrying out activities that were routine in personal, social or professional spheres.

Such an understanding suggest the relationship between the high degree of severity/visibility of the lesions and quality of life. However, the psychological and emotional impact caused by psoriasis is not always related to the extent/severity of the disease. Despite the high psychosocial impact, the level of adaptive impairment may vary according to the patient's perception2,16,17.

In order to better understand these perceptions, we discuss the implications of the disease in the daily life of patients, presented in the context of physical, psychosocial and family implications.

Physical implications

Patients with chronic dermatological diseases perceive their health affected, they feel limited in routine activities and experience loss of vitality, leading to work absenteeism and depression and social isolation18.

In this study, the disease was identified as causing restrictions, such as difficult locomotion, due to joint involvement, intense pain, insomnia, pruritus, edema, among others. The following speeches are some reports obtained:

[...] I faced many challenges, critical moments, difficulty sleeping, walking with the skin exposed to the sun. [...] there was a time when I was not able to walk because of the joints, the knee, very sore, the skin was peeling a lot, to the point that I could not stretch my skin. (I3)

[...] I was terrified, it was not just the body that was ugly, it was itches and pains, because when the joints swollen, they hurt a lot. And the itches, they burned. I was suffering a lot... (I6)

Psoriasis interfered with or prevented professional activity, caused absenteeism, and in some cases the need to quit the job due to the severity of the disease. Repercussions on the work environment took place in different ways. The visibility of the lesions was indicated as a reason for leaving the work, and in other cases, the physical condition prevented the exercise of professional activity. Here are some reports:

I used to work with children, children from zero months came with very clean skin, and the disease was on my skin. The parents would look to each other, many times they did not want me to pick up the child, because they thought it was contagious and dangerous to their kids. That's when I was left the service to seek treatment. (I19)

When my body got all over affected by the disease, I was down. I applied for sick leave, for a month, because I was feeling bad about it, embarrassed. People are curious, they keep looking. At first I did not care, but then it was already bothering me. But it did not help much, when I returned I still had visible lesions. (I6)

Patients not only miss work activities, but they also lose productivity. The discomfort related to pruritus, peeling and redness, with a strong psychosocial impact, may justify this data. Furthermore, it is possible that the presence of comorbidities such as cardiovascular disease, more prevalent in patients with psoriasis, may also contribute to the loss of labor productivity19. Although the lesions are not contagious, individuals affected by psoriasis are usually treated with aversion and distrust in occupations that require direct interaction with the public 15.

Changes in appearance also affect the daily life of patients. Thus, greater concern with self-care and more time with practices of body hygiene are necessary, and this is an aspect that reverberates in the daily routine.

Most participants reported changes in hygiene habits and self-care after diagnosis. It is known that the disease causes greater vulnerability and psychosocial impact in the context of personal hygiene, use of different types of clothes, increase in the frequency of bathing and change of clothes17. The deponents emphasized:

The clothes, we can not wear any type of fabric, we have to wear 100% cotton, no jeans, only fine clothes, to keep the skin well treated, because the warmth causes the disease to come and the itchy. (I8)

There is no quick shower; that changes. You need to have the patience to dry yourself, because when you have many injuries, even the hand feels like it is cutting the skin. It is very bad. (I9)

I needed a lot of time to apply the ointment; before, I was all full of marks and I had to use ointment, I would ask my daughters to apply the ointment on my back. It takes a long time and it is very annoying. (I7)

A study on diabetes showed that the disease is seen as a difficult burden to carry. Body care is considered a burden because they require a great investment of financial resources and time and because they cause annoyance 20. This negative connotation makes self-care difficult. And yet, coping with the disease is directly related to the care to be performed. Nurses are important in this context because they can mediate the emotional relationship and the way the patients see self-care.

Regarding the confrontations and repercussions of the disease in the development of daily activities, the patients mentioned the perception of negative effects on health and vitality, despite the fact that the illness is not considered to cause physical debilitation. The damage caused to people's lives is as strong as that caused by hypertension or any other disease that has major impacts. Psoriasis is considered one of the skin diseases that causes more restrictions to patients, so that physical, psychic and social damages are equally important21.

Psychosocial Implications

Social isolation became part of the daily life of the participants. The repetition of words that express negative feelings, such as disgust, fear, depression, isolation and shame is frequent in their speech. The participants had deprived themselves of leisure activities such as going to parties, beach and pool, practicing physical exercises, or even cooking for family and friends.

In general, psoriasis causes isolation and fragility of social bonds. The patients are afraid to be among other people; they believe that maintaining social contact results in exposure. The fear that people will think their disease is contagious and repulsive leads them to give up leisure activities. Here are the speeches:

I used to enjoy making cakes; sometimes I would prepare a cake to give to someone else. But I thought, my God, no one will want to eat what I do. (I25)

I was very isolated at home; I am afraid to go out for a walk. I hate taking photos! In the photos, the things on my face are too evident. I only go out for work, [...] I don't go to the beach, or swimming pool, because if I go people will look at me. I'm afraid to get in a pool and that they won't let me in. (I13)

[...] everybody keeps looking at me, I feel very uncomfortable; I want to disappear! (I8)

Exposure means being in evidence, and the gaze of others bothers the people affected by psoriasis. In their reports, they expressed feelings of restlessness, irritation, insecurity and embarrassment before the eyes of others. Social phobia can be caused by the exposure of an altered image, the judgment of others, and curious and prejudiced looks from society. These aspects afflict people affected by skin disorders22.

There are reports of episodes of prejudice, either from known or unknown people, or caused by self-prejudice. Among the psychosocial implications, stigma is strongly associated with the disease. The term stigma conveys something evil about one's moral condition, as a mark imposed by society that serves as a criterion for exclusion23.

Becoming a constant target of stigma is one of the main barriers imposed on patients with dermatological disease. As these diseases work as a social brand, the affected people stand out as different among peers, interfering in a negative way with interpersonal relationships. Among the stigmatized individuals, two types stand out: those with unapparent stigma; and those obviously stigmatized and who are constantly exposed to the tensions generated during social gatherings24.

Lesions are evident in most psoriasis patients. As lesions are visible, they represent a strong source of distress in social interactions. When people look at their own body as changed by a disease and perceive themselves as different, it is natural that they experience loss of self-esteem. From then on, they begin a process of reorganization of daily life and develop mechanisms of social isolation25,26. The stigma that these people believe that surrounds them was observed in the reports in the present study. Social isolation happens due to the gaze of others. In many cases, they actually suffered some form of discrimination. The following reports highlight this:

[...] sometimes I'm in the bank line, when people see my arm, they take two steps backwards. (I3)

I have already suffered prejudice at work, in the church; people usually avoid sitting by my side, on the same bench, they do not hug me, they pass by and whisper ... (I19)

In some cases, patients develop self-stigma and anticipate attitudes of discrimination, although they have not been victims of such behavior. Self-stigma is the result of the patients' own reactions of non-acceptance of the disease and of oneself. They adopt self-deprecating behaviors, discontent and dissatisfaction as to their physical appearance, and deny themselves27. Here are the speeches:

[...] I think it is my own prejudice, I was ashamed. I thought, what people may say? Maybe they'll be disgusted with me? Because it was ugly. (I2)

Deep down, I never wanted to accept myself as a different person [...] I do not want to see myself differently! I want everyone to see me as a normal person. (I3)

When psoriasis patients perceive this situation, they look for ways to control it by staying away from social contact or seeking to share in groups with similar characteristics. Psoriasis, more than other dermatological diseases, makes people feel despicable, untouchable, dirty; they believe to be disgusting and feel the burden of a society that preaches inflexible aesthetic standards28.

Family Implications

The family is a nucleus where individuals are inserted since birth up to the finitude of existence. The family has therefore relevance in the context of illness, especially in the case of chronic diseases. The family is recognized as essential to cope with the disease. When the participants mentioned how they started to relate to people after the diagnosis, they focused on family relationships. This reinforces the concept that social relationships are often restricted to the family. When the family does not support the ill person, adaptation is more difficult.

With my family I have no shame, no prejudice, they understand me. (I10)

[...] I used to feel people condemning me, as if it were a contagious disease, I felt inferior, but my daughters gave me a lot of strength and I carried on. (I24)

[...] even relatives moved away from me. My family took so long to deal with the situation. My father, my mother... they would not accept it. Only with time I saw that it was not a question of accepting, but of dealing with it. Because I myself would not accept it either; but I can't take my body and close myself. (I3)

The two situations were experienced by the participants. In the case of family support, they felt supported because there was an understanding of their state. But in some cases, it was the opposite. The lack of support can represent a new stressor and worsen the course of the disease. The feeling of self-rejection in the last report to help the client to explain the behavior of non-acceptance on the part of the family was noteworthy.

Feelings of anxiety and depression reduce the sharing in social activities of patients and their relatives. Such feelings and their consequences are felt by the family, who may develop the same feelings. If relationships are affectionate, they will positively influence the patient by providing emotional support. The disease causes changes in the life of the patient and of the family with the increase in expenses, housework, and more dedication of time to treatment and care15.

 

CONCLUSION

Psoriasis can become an obstacle, be it physical, emotional, social or personal, and a source of negative feelings such as fear and frustration. The experience of illness goes beyond the biological consequences and requires the reorganization of routine activities and social readaptation, requiring a biopsychosocial and multiprofessional approach in order to meet the needs of the patient in its totality.

The little possibility of generalization due to subjectivities represents a limitation of this study. However, its results may favor an understanding of the psychosocial aspects involved in psoriasis and help in coping with it.

 

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