ORIGINAL ARTICLE
“PILGRIMING”: EXPERIENCES OF FAMILY MEMBERS OF PEOPLE WITH CYSTIC FIBROSIS
“PEREGRINANDO”: VIVÊNCIAS DE FAMILIARES DE PESSOAS COM FIBROSE CÍSTICA "PEREGRINANDO": VIVENCIAS DE FAMILIARES DE PERSONAS CON FIBROSIS CÍSTICA
Geisa dos Santos Luz1 Leidyani Karina Rissardo2 Leticia Picoli Vituri3 Victoria Abud Meyer4 Sandra Marisa Pelloso5 Maria Dalva de Barros Carvalho6
ABSTRACT
Objective: to describe the experiences of family members of people with Cystic Fibrosis. Methods: this is a descriptive, qualitative study with 21 relatives of people with Cystic Fibrosis, enrolled in the Associação Paranaense de Assistência à Mucoviscidose (Brazilian Association of Mucoviscidosis Assistance), living in the North and Northwest regions of the State of Paraná. Data were collected through an open interview and content analysis, and for the treatment of the speech was used content analysis, thematic modality. Results: two thematic categories were identified: “pilgrimage for diagnosis and treatment: the search for balance” and “Cystic Fibrosis: a discourse little known in the health field”. The results showed that the daily life of the families was adapted prioritizing care in Cystic Fibrosis, with a reorganization of the family structure. There were difficulties in establishing an honest and enlightening dialogue with health professionals, from diagnosis to treatment. Final considerations: in the face of the long itinerary that families go through in order to have the correct diagnosis of the disease and, often, in the face of the lack of professional preparation to assist the patient and their relatives, it is perceived as urgent that health policies and training of the professionals contemplate the theme of Cystic Fibrosis and the ways of facing it in the family routine.
Descriptors: Family; Cystic Fibrosis; Experience; Diagnostic; Therapy.
1Nurse. PhD in Nursing. Professor at the Department of Medicine of Centro Universitário de Maringá (Unicesumar). E-mail: geisaluz@yahoo.com.br
2Nurse. PhD in Nursing. Professor at the Department of Medicine of Centro Universitário de Maringá (Unicesumar). E-mail: ka_rissardo@hotmail.com
3Undergraduate in Medicine at Unicesumar. E-mail: levituri@hotmail.com
4 Undergraduate in Medicine at Unicesumar. E-mail: victoria_abud@hotmail.com
5 Nurse. PhD in Nursing. Professor at the Nursing Post-Graduate Program at Universidade Estadual de Maringá (UEM). E-mail: spelloso@uem.br
6 Nurse. PhD in Nursing. Professor at the Health Science Post-Graduate Program at Universidade Estadual de Maringá (UEM). E-mail: mbcarvalho@uem.br
Corresponding author: Leidyani Karina Rissardo. Address: Centro Universitário de Maringá (UNICESUMAR) Av.
Family experiences of people with cystic fibrosis
RESUMO
Objetivo: descrever as vivências de familiares de pessoas com Fibrose Cística. Métodos:
estudo descritivo, qualitativo, realizado com 21 familiares de pessoas com Fibrose Cística, cadastrados na Associação Paranaense de Assistência à Mucoviscidose, residentes nas regiões Norte e Noroeste do Estado do Paraná. Os dados foram coletados por meio de entrevista aberta e para tratamento das falas foi empregada a análise de conteúdo, modalidade temática.
Resultados: foram identificadas duas categorias temáticas: “peregrinação pelo diagnóstico e
tratamento: a busca do equilíbrio” e “Fibrose Cística: um discurso pouco conhecido na área da saúde”. Os resultados evidenciaram que o cotidiano das famílias foi adaptado, priorizando o cuidado à pessoa com Fibrose Cística, levando a uma reorganização da estrutura familiar. Houve dificuldades para o estabelecimento de um diálogo franco e esclarecedor com os profissionais de saúde, desde o diagnóstico até o tratamento. Considerações finais: frente ao longo itinerário que as famílias percorrem para ter o diagnóstico correto da doença e, muitas vezes, frente à falta de preparo profissional para assistir ao paciente e seus familiares, percebe-se como urgente que as políticas de saúde e a formação dos profissionais contemplem a temática da Fibrose Cística e as formas de enfrentá-la no cotidiano familiar.
Descritores: Família; Fibrose Cística; Vivência; Diagnóstico; Tratamento.
RESUMEN
Objetivo: describir las vivencias de familiares de personas con Fibrosis Quística. Métodos:
estudio descriptivo, cualitativo, realizado con 21 familiares de personas con Fibrosis Quística, registrados en la Asociación Paranaense de Asistencia a la Mucoviscidosis, residentes en las regiones Norte y Noroeste del Estado del Paraná. Los datos fueron recogidos por medio de entrevista abierta y para tratamiento de los discursos fue utilizado el análisis de contenido, modalidad temática. Resultados: fueron identificadas dos categorías temáticas: “peregrinación por el diagnóstico y tratamiento: la búsqueda del equilibrio” y “Fibrosis Quística: un discurso poco conocido en el área de la salud”. Los resultados evidenciaron que el cotidiano de las familias fue adaptado priorizando el cuidado en Fibrosis Quística, con una reorganización de la estructura familiar. Hubo dificultades para el establecimiento de un diálogo franco y esclarecedor con los profesionales sanitarios, desde el diagnóstico hasta el tratamiento.
Consideraciones finales: frente al largo itinerario que las familias recorren para tener el
diagnóstico correcto de la enfermedad y, muchas veces, frente a la falta de preparo profesional para asistir al paciente y sus familiares, se percebe como urgente que las políticas de salud y la formación de los profesionales contemplen la temática de la Fibrosis Quística y las formas de enfrentarla en el cotidiano familiar.
Descriptores: Familia; Fibrosis Quística; Vivencia; Diagnóstico; Terapia. INTRODUCTION
Cystic fibrosis (CF), also known as mucoviscidosis, is an incurable, systemic metabolic disease of genetic origin that is more common in Caucasians of European origin and rare in Asians and Blacks(1,2). Transmission of the disease occurs in an autosomal recessive way, that is, both parents have in one of their alleles the mutation of the disease. In each gestation there will be the possibility of
25% of having a child with the presence of the two mutations in the gene, which will characterize it as a person with CF(3). Because of the viscosity of secretions in the body, the person with CF may have several clinical manifestations, among which the most common is related to the respiratory system, corresponding to 90% of morbidity(1). Other expressions of the disease involve gastrointestinal, hepatobiliary, genitourinary and reproductive tracts(3,4). Due to complications from the disease, mainly in the respiratory
Family experiences of people with cystic fibrosis
system, most people with CF currently survive up to forty or fifty years(3).
Because it is a genetic disease and because it does not have a high frequency in the general population, experiencing CF illness of a family member constitutes a moment of fragility and reorganization of roles in the family nucleus. Disclosure of the disease requires constant care within and outside the home, as well as special attention from health professionals who assist individuals and their families(5).
The fact that it is, sometimes, considered a stigmatizing disease and revealing the diagnosis of a chronic hereditary disease brings a sense of guilt to the family, especially the parents, as well as the prospect of a new world with challenges and limitations. The constant experiments on examinations and hospitalizations require the reorganization of daily life to confront fears, disappointments and, mainly, of continuous coexistence with aggravations, hospitalizations and the proximity of death(6).
In addition, parents who are not adequately hosted and directed by health professionals can perpetuate a sense of direct responsibility for the child’s condition and do not often blame each other or accuse the spouse of the child’s illness. This situation can alter the family context, leading to arguments, accusations and fights that harm not only the person with the disease but also the whole family, as well as all those involved in the care process(6,7).
Therefore, giving voice to these families and understanding their most intimate experiences regarding the management and care of the disease, makes it possible to recognize the existential dimension of the phenomenon, which contributes in a unique way to the improvement of the health care of people with CF and their families by allowing health professionals to recognize the need to understand the particularities of each family attended. It was in this sense that the present study aimed to describe the experiences of family members of people with CF. METHODS
This was a descriptive study of a qualitative approach, developed with 14 families of people with CF residing in the North and Northwest regions of the State of Paraná, specifically in the municipalities of Londrina, Maringá, Mandaguaçu, Assaí, Cianorte, Umuarama and Campo Mourão.
The family members were selected from the record of the person with CF of the Associação de Assistência a Mucoviscidose do Paraná (AAMPR) (Brazilian Association of Mucoviscidosis
Assistance). AAMPR provides
multidisciplinary follow-up to families and people with Cystic Fibrosis since 1988. It is the center of support and treatment for people living in the State of Paraná and is headquartered in Curitiba(8).
From the search in the AAMPR, we obtained the information of the existence of 17 families living in the North and Northeast regions of Paraná. On this occasion, data were also provided regarding the home address, telephone number and contact name of the person registered with the person who had CF. The criteria for inclusion of family members were: to have a loved one with CF enrolled in AAMPR and to be close to that person with CF, participating in their life routine and health care. In some cases, because there was a family nucleus with mother, father, siblings and grandparents directly involved in the care and participative of the entire care process, it was decided to conduct interviews with more than one family member, which occurred together.
The first contact with the relatives, aiming to invite them to participate in the study, was through telephone. One of the families could not be contacted due to out of date and two others refused to participate in the survey. Therefore, the 14 families included in this study, being 21 participants, were interviewed in the period from January to April 2008, based on the guiding question: “What is the experience of living with a loved one with cystic fibrosis?”, if necessary other questions were added to the interview. In addition, information was collected on sociodemographic characterization of each family.
All the interviews were recorded in audio and happened, according to the
Family experiences of people with cystic fibrosis
availability of the researcher and the family, in reserved environment suggested by the participants. It is noteworthy that four interviews occurred in a reserved place, but in the work environment of the participant and the others were carried out at home. CF carrier did not participate of any of the interviews.
After each interview the audio was transcribed in full, preserving the natural form of the testimony. This material was then subjected to the analytical process. In order to do so, we used content analysis, thematic modality following the steps of pre-analysis, material exploration and data processing(9). In the pre-analysis, the organization, transcription and separation of the empirical material were done, followed by a reading of the data set with identification of relevant aspects from the study objective. In the exploration of the material the classification and aggregation of the data was done, starting from a process of careful reading, with identification of the common and specific aspects, rising the preliminary categories. Finally, in the treatment of data, the systematic organization in thematic units of the material was carried out, with inferences and interpretation of the categories according to the current literature on the subject.
The study was approved by the Permanent Committee on Ethics in Research with Human Beings of the Centro Universitário de Maringá (Opinion no. 464/2007) made in accordance with the Resolution 196/96 of the National Health Council, in force at the time of data collection. All participants signed the Free and Informed Consent Form in two ways and to maintain secrecy and anonymity, the relatives were identified by numbers that correspond to the sequence of the interviews, with the respective degree of kinship of the person with CF.
RESULTS
Knowing Research Participants The participants of the research were 14 families of people with CF, totaling 21
members, 15 female, 13 mothers, four fathers, two grandparents and two grandfathers. In the families there were 16 people with a diagnosis of CF, with a mean age of 15.5 years. Four of them had the early diagnosis identified by neonatal screening. Interestingly, those diagnosed late were at infant age, with an average of five years of age.
The mean age of mothers with children diagnosed through neonatal screening was 31 years, but at the time of diagnosis the mean age of these mothers was 25.5 years. Regarding only the mothers of those with late CF, the mean age increased to 40 years, and at the time of diagnosis, it was 28 years. Of the fathers who participated in the study, the mean age was 36 years and was 28 years at the time of diagnosis.
The families had, on average, two children. In addition, they reported the birth of six other people with CF who died before six months of age but without a confirmed diagnosis.
The mothers were the main representatives when the subject was care for the person with CF, due to their greater availability of time and the greater insertion in the daily life of the child. However, it was noted that the father kept track of all the suffering from the first signs and symptoms to hospitalizations and delusions with the diagnoses. In most families the father was the provider, a fact that justifies his absence at times or even his little involvement in the care of the person with CF.
In relation to families with people diagnosed late, when the subject was the experience before diagnosis, the most expressed feelings were: anguish, oscillations between desistence and insistence, outbreak and fear of losing the child and the unknown. From the diagnosis, the feelings reported were relief and calm from there being aware of the child’s illness and courage and persistence to face the possible challenges arising from the diagnosis.
It is interesting to note that the scene reverses when it comes to the families that received the early diagnosis. It was possible to identify that the families felt anger, they lived the distancing of the child, the mourning, the social isolation
Family experiences of people with cystic fibrosis
and the fear from very early. However, all the families were quite sensitized when speaking about the moment of the diagnosis, even though for some of them it had the meaning of relief and for others, it was mourning.
Family members’ perception of CF allowed the identification of two categories: “Pilgrimage for the diagnosis and treatment of the disease: the search for balance” and “Cystic Fibrosis: a discourse little known in the health field”. Pilgrimage for the diagnosis and treatment of Cystic Fibrosis
Diagnostic time, health professionals’ way of revealing such diagnosis, the disease stage and the current disease situation were relevant factors in the variations of the expressions in the speeches found in the present study. It was observed that the current health conditions of the child influenced the description of the disease and its concern about the future of health. However, regardless of the early or late diagnosis, in all families it was possible to identify the social and psychological damages in the experience of this new condition.
Initially, shock and impact were evidenced by the denial of the disease. The parents went through a process of initial mourning, because the dreams of a healthy child go away and they begin to seek the acceptance of a child with special conditions, who will need care. “[...] when my wife found out she panicked ... too much! She thought it would end the world, that our son should not have this disease, my wife was terrified” (E2 - Father).
At times, the feeling of denial and anger was linked to the professionals’ behavior when revealing the diagnosis, constituting a complex situation and of great impact in the families. It can be verified that when the child was diagnosed with CF some families experienced gradual sensations with the awareness and the revealing of the disease:
“The doctor said: your son has a disease called mucoviscidosis that has no treatment and he will die due to respiratory failure!! Just like that!! [...] My world fell again [...] I even hit
the car so upset that I was” (E1 - Mother). With certain barriers in the health service as they tread a path in search of diagnosis, some families find themselves in a new world, of little or no clarity, veiled by the mysteries and enigmas of a chronic disease. This stage was marked by the search for information that corresponded to the anxieties and concerns within the family. In some cases, the dedication became so intense that, involuntarily, the family deprived itself of the social and/or personal world in exchange for restoring the health of the sick child.
In the meantime, some families have been living with people who live similar situations in remote cities, and they have separated from living with other relatives, such as the husband or wife, children and parents (grandparents), who were isolated from their daily lives. This phase also denoted the religious pilgrimage of the family by a coherent diagnosis or, even, cure of the disease.
“When we received his diagnosis (son) I did not believe. I looked for several churches, I went to Aparecida do Norte to try to understand why we were going through it [...] It helped me to overcome, but it did not cure him” (E11 - Mother).
“I did not know who to appeal to. I sought the pastor of my church for him to help my family” (E14 - Grandmother).
Pilgrimage by these families reveals the lack of adequate assistance and organization of the health system in the reception of the patient. In general, the family, when leaving the medical service with the diagnosis, various prescriptions and requests for examinations, projected on the sick member a feeling of disconsolation and impotence when it came to reflect on their social, emotional, financial and cognitive context.
In summary, it was identified that the experiences of some families, before the diagnosis, were distressing moments, considered by them as a via-sacra, without solution, and permeated by unknowing the disease and lack of reception by the health professionals. Cystic fibrosis: a little-known speech in the health field
Family experiences of people with cystic fibrosis
Propaedeutic based on the families’ speeches were about signs and symptoms such as: diarrhea, recurrent coughs, low weight, meconium ileus, among others. The symptoms did not always manifest at birth, but usually at the infancy stage. Many families described dissatisfaction with the posture of health professionals, especially physicians, regarding subjective clinical symptoms and their intimate relation to the object, at the moments of consultation.
“[...] I would tell the doctors, that he would evacuate with fat, nobody cared, the pediatricians thought I was crazy! [...]” (E3 - Mother).
According to the relatives’ reports, medical professionals, in view of the possibility of occurrence of CF, use books as a way of dealing with the family. The speeches are an outburst as the lack of knowledge of the diagnosis and conduct of the medical field in relation to CF when, at the time of the consultation, they refer to it as a disease that is treated with “a little bit of cough syrup”.
“Every time the doctor only prescribed syrup for that cough with catarrh, he could not take it any longer. Never investigated anything but the flu, I do not know if that doctor knew about Cystic Fibrosis. We went on a pilgrimage a long way until the diagnosis, which was only confirmed in the ICU” (E7 - Mother).
“I do not know if the doctor had ever treated to someone with Cystic Fibrosis, but when I told him that my son had it, he (doctor) was terrified about what to do. He left the office in the middle of the appointment and then came with the exams requests” (E3 - Father).
The experiences of the families revealed that the lack of knowledge of the health professionals about the disease and the diagnosis and the lack of confidence in the prescription of the action caused in them a feeling of insecurity, inciting fear and anguish of death, mainly due to the lack of adequate care.
In addition, it was observed the lack of information of the professionals about the CF, which generated besides lack of confidence of the family, the breakdown
of the bond between service and user, which entailed a fragmented and non-longitudinal treatment. In this sense, the participants raised the need for specialized centers on the disease, in order to improve treatment:
“I do not know if there is a specialized center for Cystic Fibrosis, I’m looking for. But it should have, at least, in big cities. Because this way, it would useful for us, family members and for other professionals to clarify their questions” (E2 - Grandmother).
It can be verified that the lack of information from the health service was identified in the speeches of all the family members, revealing their desire to have more knowledge and empowerment in relation to CF and the simplest care in this situation.
DISCUSSION
By giving voice to the families of people who live with CF, they could expose their memories and life histories, rescuing part of the past, showing the present that they live and projecting future perspectives. All this process experienced and projected was permeated by anxieties, fears and unfathomable questions before or during the diagnosis and treatment of CF of the family member with this clinical condition.
Facing this context of “being a pilgrim in strange lands” or walking through the unknown of disease, it puts the family nucleus in a fragile and moving moment. Religious pilgrimage can be a family shelter in the face of the diagnosis, since in the most complicated situations spirituality and faith become present in the lives of people who seek trust and meaning in a higher Being(10). Faith and hope provide strength and tranquility to accept illness, as well as expectations of healing both for the family member and for the sick person him/herself(11). Regardless of religion, the family places their faith in God which is another form of support, using prayer to ease the pain caused by the discovery of the disease(10).
Family experiences of people with cystic fibrosis
Stimulating the social support networks of the family and the person with CF becomes essential in the treatment of the disease. However, the health service plays a fundamental role in the support and guidance of people living with CF. The pilgrimage for health services and its professionals builds strong feelings, plus fear, insecurity and expenses transiting around(12). The superficial attitude linked to the lack of knowledge on the part of some health professionals causes trauma of difficult healing in the family experience(13).
The disease opens a path, sometimes long, difficult and unpredictable in the face of many exams, consultations, hospitalizations and transiting around(14). The relationship between the family and the health service and society, in the face of lived experience, delineates their way of being, thinking, acting, valuing, feeling and judging(14). Therefore, the particularity of each family, its deficiencies and difficulties must be respected and evaluated by health professionals so that the person with cystic fibrosis and family have a less traumatic and limited experience of the disease.
A study carried out in Mato Grosso on nurses’ knowledge regarding the importance and operationalization of the National Neonatal Screening Program demonstrated that these professionals had superficial knowledge about the Guthrie test, and especially about the CF(13). Another investigation points out the need for the professional to present sensitivity and a look at understanding the CF phenomenon, considering the complexity of family care in this chronic disease process(5).
Health professionals, especially nurses who have the art of care as the essence of the profession, need to have humanization, guidance and monitoring for the family that experiences the diagnosis of CF(15,16). In the case of chronic diseases, and especially CF and family sensitizing, should be effective by health professionals, so that the information provided is implemented inside and outside the home and that can improve the quality of life of all involved.
Although there is a need for training and training on CF of health professionals who work or ever come to work in health services, the complexity of CF and the peculiarities of its treatment result in the need for specialized treatment centers. There is evidence that treatment in specialized reference centers, which have a multidisciplinary team, results in better clinical outcomes, with an impact on the prognosis(1).
It is highlighted that the great allies of the families in the care with the person with CF are the specialized centers and the associations of support to the person and his family(12). In Brazil, there are 33 centers specialized in the treatment of the disease and 25 associations linked to the Associação Brasileira de Assistência à Mucoviscidose. Through them are distributed the high-cost medicines used in the treatment of cystic fibrosis. In these places, families find support and guidance, as well as other families in a similar situation to share experiences and information(7,12). Although this seems a costly solution, it may reflect less expense for the treatment of the disease, since patients and family members will be better prepared to prevent or delay complications.
When the health professional assists the person with CF and his/her family, he/she needs more than clinical eyes, he/she must transcend technical care from biological, disease and object care when needed. He/she needs to be imbued with specialized knowledge and experience that encompasses humanized care. Therefore, investments that bring the empowerment of the health team and transcend to these families are relevant to the progress and success of the treatment(17). The multiprofessional team, whether in reference centers or not, should support the family and the person with CF, with frequent debate about the evolution of the case. And for that, this team needs to be technically prepared and convinced of the importance of humanization in this process.
Family experiences of people with cystic fibrosis
The experiences exposed by the families of this study reveal the feelings that each member had regarding CF. An important pilgrimage was observed until the diagnosis of the disease was established. After the recognition of the existence of the CF, the families continued to face difficulties, mainly because the health professionals showed little knowledge about the issue, which impacted on the quality of the assistance received.
The present study, although covering the testimonies about the experiences of family members of people with CF, presents as a limitation its regionalization, which when performed with only one group, the AAMPR, makes it impossible to replicate the findings to other groups. We suggest new research with the same research aspect, but with other approaches that present the
deepening of the perspective of the family on the quality of the service used, as well as the perception of the health professionals about the care of this clientele.
There is a need for new public policies on the theme and the implementation of reference centers, to increase qualified care and humanize care, reducing the difficulties of those living with CF and its complications and aggravations.
Finally, it is worth noting that understanding the limitations that CF brings to the family is a challenge, since it demands from the health professional an ethical, political and solidarity conscience. Rethinking the needs of families in the context of rare diseases may reflect advances in care, research, and especially in relation to social and inclusion responsibility.
Individual contribution of authors: Luz GS; Rissardo LK; Vituri LP and Meyer VA: Participated in the design
and writing of the project; analysis and interpretation of data; writing of the article and final approval of the version to be published. Pelloso SM and Barros MD: Participated in the relevant critical review of the intellectual content and final approval of the version to be published. All authors claim to be responsible for all aspects of the work, ensuring its accuracy and integrity.
Submitted: 12/09/2018 Accept in: 25/02/2019
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