Freedom of being yourself: experiences of adolescents with chronic skin diseases at a camp^a

Abstract

Objective

To understand the experiences of adolescents with chronic skin diseases who participated in a camp.

Method

Phenomenological study with six adolescents diagnosed with chronic skin disease, participants in a camp in Brazil. Data collection: phenomenological interviews were conducted from July 2015 to January 2016.

Results

Three thematic categories emerged and enabled the understanding of the phenomenon. Participating in the camp brings about change in the lives of adolescents and their ways of being in the everyday world. It encourages them to reflect on the stigma they have experienced before and the new experiences, after attending the camp, help them to cope with life’s challenges in a more optimistic way.

Conclusion

For the adolescents, the experience of participating in the camp is transformative due to the possibility of meeting with peers and experiencing an environment free of prejudice, allowing the adolescent to be him/herself.

Implications for practice

Camps promote interaction among peers, being accessible strategies for health professionals, especially nurses. Interventions that, in fact, promote comprehensive health care for children and adolescents with chronic health conditions and their families, as well as the articulation between services of different complexities and their health professionals, can guarantee access to quality care.

Keywords:
adolescent; chronic disease; skin; pediatric nursing

Resumo

Objetivo

compreender as experiências de adolescentes com doenças crônicas de pele que participaram de acampamento.

Método

estudo fenomenológico, com seis adolescentes com diagnóstico de doença crônica de pele, participantes de acampamento no Brasil. Coleta de dados: foram realizadas entrevistas fenomenológicas, no período de julho de 2015 a janeiro de 2016.

Resultados

três categorias temáticas emergiram e possibilitaram a compreensão do fenômeno. Participar do acampamento acarreta mudança na vida dos adolescentes e em seus modos-de-ser no mundo cotidiano. Impulsiona-os a refletir sobre o estigma já vivenciado anteriormente e as novas experiências, após participarem do acampamento, os auxilia no enfrentamento dos desafios da própria vida de maneira mais otimista.

Conclusão

Para os adolescentes, a experiência de participar do acampamento é transformadora, devido à possibilidade do encontro com pares e de vivenciar um ambiente livre de preconceito, permitindo ao adolescente ser si-mesmo.

Implicações para prática

Os acampamentos promovem interação entre pares, sendo estratégias acessíveis para profissionais de saúde, especialmente aos enfermeiros. Intervenções que, de fato, promovam assistência integral à saúde de crianças e adolescentes com condições crônicas de saúde e seus familiares, além da articulação entre serviços de complexidades distintas e seus profissionais de saúde, podem garantir o acesso ao cuidado de qualidade.

Palavras chaves:
adolescente; doença crônica; pele; enfermagem pediátrica

Resumen

Objetivo

Comprender las experiencias de adolescentes con enfermedades crónicas de piel que participaron de campamento.

Método

Estudio fenomenológico con seis adolescentes diagnosticados con la enfermedad, participantes del campamento en Brasil. Recopilación de datos: se realizaron entrevistas fenomenológicas desde julio/2015 hasta enero/2016.

Resultados

Tres categorías temáticas permitieron la comprensión del fenómeno. Participar de campamento produce cambios en la vida de los adolescentes y en sus modos-de-ser en el mundo cotidiano. Los influye a reflexionar sobre el estigma que han experimentado y las nuevas experiencias, después de participaren del campamento, los ayuda a enfrentar los desafíos de la vida de manera más optimista.

Conclusión

La experiencia del campamento es transformadora debido a la posibilidad de reunirse con sus compañeros y experimentar un ambiente libre de prejuicios, lo que permite que el adolescente sea si-mismo.

Implicaciones para la práctica

Los campamentos promueven interacción entre pares y son estrategias accesibles para los profesionales de salud, especialmente las enfermeras. Las intervenciones que, de hecho, promueven la atención integral de la salud para niños y adolescentes con enfermedades crónicas y sus familias, así como la articulación entre los servicios de diferentes complejidades y sus profesionales de salud, pueden garantizar el acceso a una atención de calidad.

Palabras clave:
adolescente; enfermedad crónica; piel; enfermería pediátrica

INTRODUCTION

In recent years, Brazilian child health indicators point to an increase in the population with special health needs. The epidemiological change is noteworthy due to the increase in chronic non-communicable diseases (NCDs) compared to the reduction in parasitic-infectious diseases.^1,2 The World Health Organization (WHO) defines that NCDs are long-term, progressive and irreversible pathologies, which can be controlled but not curable.³

Recently, the literature has appropriated the CSHCN terminology to refer to children and adolescents who need special health care and includes those who live with chronic conditions and/or have some type of limitation or disability. This context demands a specialized health care network in quantities greater than those required by children and adolescents in general.^2,4

Nationally, official CSHCN rates are not exact; however, it is known that they exist in health services. CSHCN have particular health care demands, such as: development demands (social and psychomotor rehabilitation), technological, medication, modified habits (adaptations to perform common daily tasks), mixed (more than one type of demand for care) and clinically complex care that encompasses all of the above.⁴

Given the above, adolescents with chronic skin diseases can be called CSHCN, and with the skin being the largest and most external organ of the body, their problems are exposed, which often impacts on body image and quality of life of those who live with such diseases implying a differentiated life routine.^5,6

Children and adolescents with chronic illnesses often experience a world of exclusion, where they feel different and not accepted by their healthy peers. They rarely have the opportunity to meet and relate to others who share their situation, which can result in loneliness and contribute to social isolation.^6,7

During adolescence, body image is extremely important and having it in an unsatisfactory way can cause feelings of inferiority and low self-esteem.^5,6 The complexity of care demands involving CSHCN implies the establishment of a social network formed by the health service, family and community.^2,4,8 This network must contemplate the articulation of services and institutions, in different social contexts (hospital and community), beyond the hospital environment, with a view to reducing damage to the health of this population.²

The encounter with people who experience chronic conditions similar to their own and the sharing of experiences among peers bring countless benefits for children and adolescents with chronic health conditions participating in camps, such as asthma, craniofacial deformities, victims of burns,⁷ diabetes,⁹ cancer,¹⁰ Human Immunodeficiency Virus (HIV),¹¹ physical disabilities,¹² among others.¹³ However, there are no data in the literature on camps with children and adolescents with chronic skin diseases.

Given this context, the question is: What experience adolescents with chronic skin diseases can have in a camp?

Taking into account the need to identify who the CSHCN are in the Brazilian health scenario and the scarcity of information available about this population, so that specific public policies for this group can be implemented,^2,4,8 seeking comprehensive care for the CSHCN and the answers to the challenges of caring comes in line with this research, since such diseases can affect the global development of adolescents.

In this way, understanding them can bring important elements to expand the possibilities of health care, so that nurses can assist adolescents in their needs, collaborating not only in care, but also in teaching and research in health. Therefore, the objective of this study was to understand the experiences of adolescents with chronic skin diseases who participated in a camp.

METHODS

Qualitative study, according to the assumptions of the analysis of the situated phenomenon, which is based on Phenomenology as a philosophical school. Phenomenology is an eidetic, rigorous, descriptive, concrete and non-deductive science. It is concerned with unveiling the phenomenon in its essence, through the description of those who experience it, enabling the phenomenon to show itself as it really is.¹⁴

The phenomenological method seeks to understand what happens to the individual in his/her interaction with the world, through his/her own discourse, seeking to apprehend the meanings and perceptions of his/her experiences. Therefore, adopting the phenomenological perspective is to understand the perception and meaning of experiences from the time and space of the person interviewed.¹⁵

Phenomenological interviews were conducted with adolescents who agreed to participate in the study, exposing their experiences based on the following guiding question: “How is it for you to participate in the NGO D’s camp?”, having a second question when necessary, “How do you feel participating in the NGO D’s camp?”. The speeches were recorded on a digital recorder and later transcribed in full. The interviews ended when the obtained speeches reached theoretical saturation, that is, they showed consistency from a continuous analysis process, in the researcher’s perspective.¹⁶

The phenomenological interviews were held from July 2015 to January 2016. The adolescents were individually invited to the interview during the NGO D’s reunion, about five months after participating in the camp.

After the adolescent’s acceptance and authorization from their legal guardians, through the Adolescent’s Informed Consent Form and the Informed Consent Form, respectively, each interview was scheduled at the adolescent’s preferred place, date and time. The interviews took place in the presence of only the main researcher, at the adolescent’s home (three), at a shopping mall (two) or at the home of a third person (one), with an average duration of 16 minutes. The choice of the shopping center as the place of the interview came from the adolescents, who verbalized feeling more comfortable in a place where people did not know him/her, which does not imply a breach of confidentiality in the perspective of research ethics, since the location and the identification of the adolescents remained preserved.

The inclusion criteria for the participants were: being between 12 and 18 years of age, according to the established by the Brazilian Child and Adolescent Statute,¹⁷ having a diagnosis of chronic skin disease and having participated in one or more camps organized by a Non-Governmental Organization (NGO) operating in Brazil, in the state of São Paulo. Adolescents who had not participated in the camp at the time of data collection or whose guardians did not authorize participation were excluded.

The NGO, called NGO D in this study, has existed since 2001 and develops periodic meetings between people with chronic skin diseases, their families and volunteers, most of whom are health professionals. It aims to promote social integration and improve the quality of life of children and adolescents with chronic skin diseases. In addition, it promotes a camp, once a year, in which children, adolescents with chronic skin diseases and volunteers participate.

To achieve an understanding of the phenomenon, the qualitative analysis of the speeches was carried out following the steps recommended by the specific literature on phenomenological research^18,19 – global reading of the total content of the speech –; attentive rereading, in order to identify the subjects’ significant statements (units of meanings) – faced with the units of meanings, convergences and divergences were sought to construct the thematic categories –; a descriptive synthesis was carried out, integrating the significant statements in which the categories that express the meanings attributed by the adolescents are constituted.¹⁹

This study complied strictly with the resolution of the National Health Council on research with human beings, contemplating the aspects of voluntary participation, anonymity and confidentiality, with the participants being represented by fictitious names of Greek gods.²⁰ Approved by the Research Ethics Committee, under opinion number 1,055,849.

RESULTS

The participants were six adolescents – four female and two male, aged between 13 and 17 years. The participants’ diagnoses were: atopic dermatitis (2); psoriasis (1); ichthyosis (1); and epidermolysis bullosa (2).

After the end of the speeches analysis, that is, of the empirical material, three thematic categories emerged: The camp for the being-teenager – a “watershed”; The teenager being-with others in the camp – “this is nothing”; From the magical world to reality – the hope of being yourself more and more.

The camp for the being-teenager – a “watershed”

Before participating in the camp, the teenagers felt different, thinking they were unique and ashamed of themselves. They recognized the experience of participating in the camp as an experience that changed their lives, their ways-of-being, their existence, being seen as a “watershed”, as expressed in the speeches.

It was difficult, as I was shy, I didn’t play much, you know, I was very reserved, because I looked at myself [looks at own arms] and said “wow, only I have this”, I used to look at the children like this, “wow, nobody has”. (Aphrodite)

NGO D is quite a before and an after experience: before, a sad and alone girl, who was afraid of the world, and after a cheerful girl who is not afraid to wear clothes that are appropriate to the temperature ... And ... NGO D for me was an improvement, because it changed my life, right. [...] I wore it, it could be any weather, I would be wearing a long shirt, pants, because I was ashamed. (Athena)

Participating in the NGO D’s camp is an experience that provides pleasant moments of fun and is also perceived as a protected environment, free from discrimination and stigma, being a space for reflection and acceptance. This environment provides profound transformations, such as self-knowledge and self-acceptance, promoting freedom and security so that adolescents can manifest themselves spontaneously, being able to be themselves and perceiving their own limitations naturally, being a new facet of their way of being with the disease.

When you’re there, you forget everything [...] It’s really cool to be there [...] Yeah ... I feel, I feel very happy, very good there, it’s ... There, because there you forget everything, you just have fun, and that’s it.. (Iris)

That people are there with the same intention of nobody noticing anyone [...] that there is no barrier, there is no prejudice. (Hera)

We are accepted there, and ... The way you are, the way you feel, you are accepted. Anyway, you have the freedom to be who you are, right? (Apollo)

Of course, there were some activities that I was unable to participate in, but I did not take into account. For example: diving into the pool, I didn’t dive because I feel pain with the water. I can only make my dressing with saline. So, yeah ... I wasn’t sad because I went to camp and I couldn’t dive in the pool. (Uranus)

The self-acceptance and self-confidence developed by teenagers in the camp can lead them to feel greater security and satisfaction in relation to their own beings. The appearance of the skin becomes just one of the many characteristics that make up these teenagers.

And I discovered that it’s ... It’s a part of me [the disease], and that, I don’t know, it’s just a characteristic that makes me ... Apollo. [...] A part that I had to face and that I learned to see as a part of me, you know? [...] And not being ashamed of it. I think that’s it, it was more of a change in the way I interpret myself, and more of a freedom, you know? (Apollo)

That I could feel at ease, it was a place that I could be myself, a place where everyone is the same, there is no, there is no difference [...] There you can be yourself without fear of being happy, for real [...] I feel as myself [laughs], I can be myself there. (Aphrodite)

The teenager being-with others in the camp – “this is nothing”

The first camp is especially important for teenagers’ lives, and is often remembered and described in detail, even if it was many years ago. It marks the beginning of a change in their lives.

Yeah, it’s been 11 years [...] I went in there very shy, not talking to anyone, like if in my little world, enclosed, I didn’t talk, and... And dude, like, in the first camp, I was there in my corner, sitting on the bench, on the bus, and then comes Perseu [volunteer from NGO D, diagnosed with atopic dermatitis - fictitious name given by the participant who quoted him], Perseu comes talking to me, chitchat, chitchat, and I was quiet, you know, not saying anything, and he was trying to get something out. Then I turned to him, laughed, like smiled ... I hugged him, and then, from there, like, inside... My life started to change. [...] But it really helped me, yeah ... Meeting people with the same problems as me, sharing the problems. (Aphrodite)

The participants of the NGO D’s camp share the fact that they live with a chronic skin condition, but the diseases and their manifestations are diverse. Thus, when meeting people with different diseases, the adolescents realized not only the challenges they face, but also the struggle and overcoming in the face of their illnesses and limitations. Thus, based on the stories of others, they seek to face the challenges of their own lives.

Knowing that there are people much more different than us, who suffer much more, from a much more serious illness, which for them was not a limit, and NGO D was a life lesson [...] Because you see that this is nothing. (Hera)

And like, meeting people, real friends, people who have this characteristic in common with me [the same skin disease], and like, take it easy and are happy with it, it brings you more of a feeling of “we are together”, you know? [laughs] (Apollo)

The camp allows new campers to meet veterans and monitors who also share the chronic health condition. This meeting can show teenagers the different ways of dealing with their condition and how to exist in the world.

Then, after my first camp, wow, it was really cool, because I met people who were in the same situation as me, you know? Who have been there, because when I got there, I was young, there were people who had already been there, and they had this same skin disease, you know? Same situation as me, but they saw it in a very different way, and they were more, how can I say, more free. (Apollo)

The people there, we see a little of what, that our problem is much less than that of the people, because there are more serious problems than ours, and we begin to see a better future, right? (Athena)

Adolescents start to assume some responsibilities and, little by little, become part of the team, which is desired by them, who identify themselves when they perceive their performance similar to that of other monitors, when they were children.

Today, at 18 years old [...] What I’m most proud of is that you make a child smile, like, now I feel what you felt when it happened to me, when I let out a smile. (Aphrodite)

The relationships developed between the participants during the camp are strong affective bonds, expressed in the adolescents’ speeches as they consider the community constituted in the camp as a second family, permeated by love relationships.

The Camp means a lot to me, it’s my second family. My first family are my parents, my second family is the camp. [...] However, a word that sums up the entire camp, the people, is that I love you! (Athena)

From the magical world to reality – the hope of being yourself more and more

The challenge ahead, at some point, is to leave the magical world of the camp and return to the reality of everyday life. Participants recalled stigma situations they experienced before participating in the camp in contrast to the experiences at the camp.

There is also the problem of swimming pools, which, in a small city, we cannot. When I had, I didn’t know what it was like to go to a pool, because it was a look of ... racism, racism of skin that I’m talking about. [...] We used to enter, everyone kind of left [...], but I know that each and every person from the NGO D, there we really know, we can go into the pool, can have fun, because we know there won’t be any prejudiced. (Athena)

At the camp, much is learned and transformed in the lives of adolescents, which translates into changes in the way each one experiences the daily world.

It taught me a lot, it taught me to live in this society that, like it or not, is a society of prejudice, a society that judges a lot by its appearance, you know, never sees its interior [...] So, there it taught me a lot, like, today I don’t care anymore. People look ... I don’t ... I don’t care, you know? It taught me to live even in society. (Aphrodite)

After your first NGO D, you go back to normal life, you think, I don’t know, you’re going to have those fears again, that shame that you had before, but you don’t. (Apollo)

The change in daily life drives the desire to continue to participate and expand their participation in the activities of NGO D, both in the meetings and in the camps, which indicates that the experience is considered to be pleasant and beneficial to adolescents.

I hope to go every year, even if I can’t go one day, I will always be there because it is difficult for us to be going to reunions, but I will always try to be there, always be ... In touch with you. (Athena)

Yeah ... Then last year, I think it was last year, I started to kind of help a little, not much, I intend to help more, because I like it. I also think it’s beautiful for people to do, and I want to do it, try to help them with something, but, I don’t know, I wanted to tell people to count on me to do something. (Iris)

By identifying that children today face difficulties similar to those they faced in their childhood, adolescents express sadness and hope.

Now it is to pass on to the children who are coming, right. Unfortunately... It’s hard to see a child like that, you know, starting now, you say “wow, everything I’ve been through, the child is starting now”, but that’s no reason to be sad... To give anything up. He/she’s a, he/she’s a normal person! Huh? Just because they have... It is different, like it or not, it is ... Are you going to give up everything? Won’t you want to do anything? Will you want to stay in his/her little world? There is no reason for that. Let society judge. The important thing is that you are happy, the rest ... The rest is rest. (Aphrodite)

Adolescents express a yearning to share the experience with their peers and with people who do not have chronic skin diseases. The learning is pointed out as one of the main benefits for those who do not have skin disease, since themselves perceive a gap in their knowledge about their diseases.

And I would like other children to know, right? That... That it is for them to see that they need not be afraid, that... that it is for them to open up and... There is no reason to be afraid of the camp either. [...] Go to distract yourself, have a little fun ... and ... meet new friends, new people and new places too... (Uranus)

In my city there is no knowledge about the disease, and we had to be treated outside [...] Before even I didn’t know what I had, because I went to the doctor and none had the right knowledge, until I got to my doctor, that I treat myself, far from here. (Athena)

Through the increase in knowledge about their diseases, adolescents hope to live in a world with less discrimination, facing the enormous challenge of transforming social perception about the appearance of their skin and wish for a better future in relation to prejudice and the life of people with skin diseases in the world.

And I really liked the NGO D that... Yeah... It does away with prejudice a little, ends up meeting a lot of people, people like that, ends up knowing skin diseases that they never heard of. (Uranus)

Try to help, convince people that skin problems do not, do not pass! And that... that one day we can live in society in a way that, normally, people who do not have a skin problem live. [...] I hope that one day each one will be able to live better in society, even with their skin problems. (Athena)

DISCUSSION

As seen, the experience of the camp was transforming in the lives of the adolescents. Before participating in the camp, they felt ashamed when facing themselves, used to hide their bodies always with long clothes. They reported the possibility of being themselves in the camp, as well as participating in other camps,^11-13 which indirectly brings the statement of not being yourself before this experience.

To escape situations of social discrimination, adolescents can assume a way of being that best meets the demands of life in society, as a defense mechanism, hiding many aspects, sometimes essential, of their own beings.^6,21,22 Adolescents who need special health care followed up in a tertiary outpatient clinic in the South region revealed the need to live adolescence naturally,⁴ as well as the adolescents participating in this study.

By experiencing the camp environment, which is permeated by acceptance, sense of belonging and community, participants see themselves in a more positive way, recognize the challenges and victories of their daily lives and realize that the appearance of their skins is a characteristic which is part of themselves, learning to integrate it into their being in a positive way.¹¹ This change is also reported by participants of camps for burn victims.²³

In the daily life of a camp, it is common to achieve small daily conquests, especially in the relationship with oneself and with others. With the recognition of these achievements and the encouragement of peers and adult team members, this experience becomes pleasant, easy to adapt and provides a chance for participants to reevaluate their abilities and limitations, develop new skills and expand their possibilities.^7,11

The camp promotes a playful environment and social interaction, regardless of the target population or the age group of the participants.⁷ Playing can be considered as the child’s work, being the way in which he/she develops physically, emotionally, socially and cognitively in a natural way, configuring itself as an essential basic need of childhood, both for the healthy child and for those who live with chronic health conditions.²⁴

In contrast, children and adolescents with chronic conditions are often deprived or excluded from amusement situations, mainly due to limitations imposed by their condition and to the caring for their safety.⁷ Enjoying days of play and fun, in a clinically safe environment, appears as main motivation for creating camps for children and adolescents living with chronic health conditions.¹¹

The fun not only promotes a pleasant experience, but also provides the opportunity for participants to be children or teenagers having fun, instead of being patients under treatment.⁷ The meeting with young leaders or monitors who share the same health condition, presents itself as essential to the promotion of fun in a camp and can show different ways of dealing with their condition and how to exist in the world, and can serve as an example and inspiration for new possibilities that present themselves to these teenagers.^7,9,10,12,13

The sharing of experiences in a context of understanding, acceptance and empathy favors the creation of positive and pleasurable emotional connections.^10,11 As it is an environment permeated by positive, intense and long social relationships, the camp is an excellent opportunity for the development of friendships,^10,12,23 which precisely goes against the difficulties, such as social isolation, often experienced by children and adolescents with chronic health conditions.^6,7,21

Creating and developing friendships without feeling different from each other and being surrounded by friends reinforces the feeling of security and belonging, making participants feel more and more comfortable, included and involved in the camp community, considering it as a family. This often leads them to recognize this environment as a home, in addition to perceiving reciprocity in friendships and in important feelings such as love.^7,10-12

The sense of belonging and acceptance in a group is essential to the adolescent’s development. In the group, he/she finds a safe environment to share feelings and attitudes, to elaborate and develop ideas, in addition to creating strong emotional bonds, which helps him/her to recognize him/herself as a person. It is in this context that self-concept and self-esteem are developed, since feeling similar to their peers is of paramount importance to adolescents.^21,22

By repeating their participation in the camp and over time, campers usually develop healthier ways to face and deal with themselves, their conditions and the world, becoming themselves an example, inspiration and reference to the youngest.⁹ Influencing young people in a positive way becomes a personal mission, increasing their responsibility and commitment to themselves, their health and their daily duties.^7,13

The participation of health professionals strengthens the bonds of mutual trust and acceptance between these professionals and participants with chronic health conditions, which is essential for there to be a therapeutic relationship between them. Professionals broaden their perception and value the human aspect, understanding the participant as a person, beyond their illness, expanding their universe of knowledge about chronic illnesses and learning about living with a chronic illness. The participants, in turn, see in the professionals, in addition to the technical and procedural aspects, a person, and, as such, a possibility of bond and positive social relationship.^5,6,9,13

After the camp, the teenagers face the same challenges as before, but the way of facing them changes and looks that were previously disconcerting no longer bother, because they feel safer and more satisfied with regard to themselves and their bodies.^7,13 Such a posture makes it difficult for these people to be affected by social stigma.²²

From this new way of experiencing the everyday world, adolescents are able to reflect on the future. Participants express the desire to continue participating in the activities of the NGO D and to share the experience with their peers, which indicates that the experience is pleasant and recognized as beneficial, corroborating with studies that show that the repetition of the experience at the camp, markedly four to five participations, enhances its beneficial effects on various aspects of the participants’ development and life.^11,13

Participants identify an important gap in the knowledge about their skin diseases, both in health professionals and in society in general. Care is performed in tertiary services, often away from home. Policies and programs are scarce, as is primary care.⁴ Therefore, many live at the mercy of NGO’s meetings to have questions answered.

Unrelated to primary care, they recognize the camp as a learning experience, which leads to the desire to share the experience of the camp with health professionals and other interested people. Knowledge can lead to a reduction in prejudice, thus, adolescents seek to transform the social perception about the aspect of their skin, as well as social movements that fight for the rights of people with leprosy.²⁵

CONCLUSION AND IMPLICATIONS FOR PRACTICE

The results of this research point out that the experience of participating in a camp is transforming in the lives of adolescents with chronic skin diseases, changing their ways of experiencing the world and relating to others. Thus, it can be considered as a possibility of health intervention, with an emphasis on nursing, with the objective of collaborating with the global development of those involved, facilitating their coping with their health condition and improving their relationship with people, including health professionals.

However, it is the only camp for adolescents with chronic skin diseases in the country, which made it impossible to know other realities, the limit of this study. It is suggested to articulate services of different complexities and their health professionals, in order to guarantee access to quality care.

In view of this finding, it is considered that camps and other activities that promote healthy encounters and interaction between peers may be accessible strategies for health professionals, especially nurses, in order to subsidize interventions that, in fact, promote comprehensive health care for children and adolescents with chronic health conditions and their families.

Thus, this study highlights implications for nursing practice. It is imperative to go beyond the care of the physical body, focused on the disease, reaching the needs of an emotional and social nature, which leads us to reflect on the training of nurses and the possibilities of teaching care that considers the other in his/her multiple dimensions.

Finally, it was found that the literature on this topic is scarce, so it becomes necessary to expand the production of knowledge about the phenomenon and, therefore, increase the care proposals for adolescents.

FINANCIAL SUPPORT

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – CAPES (Coordination for the Improvement of Higher Education Personnel, in free translation) (Master’s Scholarship - Social Demand) to Camila de Souza Costa, Process number 01-P-3481/2014. Campinas, São Paulo – Brazil.

• a
  Article extracted from the master’s thesis: “Do viver aprisionado à liberdade de ser si-mesmo: vivências de adolescentes com doenças crônicas de pele em acampamento educativo” (“From living imprisoned to the freedom of being yourself: adolescents with chronic skin disorders’ life experiences at an educational camp”, extracted from Unicamp’s Scientific and Intellectual Production Repository). Sustained in 2016 by Camila de Souza Costa, under the guidance of Professor Luciana de Lione Melo. Postgraduate Program in Nursing. Universidade Estadual de Campinas.

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Edited by

ASSOCIATE EDITOR

Eliane Tatsch Neves

Publication Dates

• Publication in this collection
  11 May 2020
• Date of issue
  2020

History

• Received
  19 Nov 2019
• Accepted
  26 Feb 2020