ITINERÁRIO TERAPÊUTICO DE PESSOA JOVEM ACOMETIDA POR ACIDENTE VASCULAR ENCEFÁLICO / THERAPEUTICAL ITINERARY OF A YOUNG PERSON AFFECTED BY STROKE

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ORIGINAL ARTICLE

THERAPEUTICAL ITINERARY OF A YOUNG PERSON AFFECTED BY STROKE ITINERÁRIO TERAPÊUTICO DE PESSOA JOVEM ACOMETIDA POR ACIDENTE VASCULAR

ENCEFÁLICO

ITINERARIO TERAPÉUTICO DE PERSONA JOVEN ACOMETIDA POR ACCIDENTE VASCULAR ENCEFÁLICO

Fernanda Gatez Trevisan1 Victória dos Santos Laqui2 Rafaely de Cassia Nogueira Sanches3 Maria Aparecida Salci4 Anderson da Silva Rego 5 Cremilde Aparecida Trindade Radovanovic6 ABSTRACT

Objective: To know, through the therapeutic itinerary, the behaviors that influence the

search for care of a young adult who has experienced stroke. Methods: A case study, with a qualitative approach, carried out in a city in the interior of the state of Paraná, Brazil. The data collection was carried out between the months of December 2014 and February 2015 and it was done through in-depth interviews. The data were analyzed from the content analysis, thematic modality. Results: The categories emerging from the analytical process were "Influence of family relationships in the choices during the recovery path after stroke"; "Influence of professional bond and welcome in the choices of care of the sick person" and "Influence of religion and alternative medicine in the choices of treatments and care". Final considerations: The research unveiled how a young adult affected by stroke shares behaviors and chooses the care she wants to receive, revealing that her attitudes are directly influenced by the behaviors of her closest family members.

Descriptors: Comprehensive Health Care; Stroke; Chronic Disease; Family Relations;

Case Reports.

1_{Nurse. Master student in nurse in the State University of Maringá (UEM). E-mail:}_{fer.gatez@gmail.com} 2_{Nurse. Resident in nursing by UEM. E-mail:}_{vitorialaqui@hotmail.com}

3_{Nurse. PhD student in Nursing by the Graduate Program in Nursing of the UEM. E-mail:}_{rafaely.uem@gmail.com} 4_{Nurse. PhD in Nursing. Professor at UEM. E-mail:}_{cidinhasalci@hotmail.com}

5 _{Nurse. PhD student in Nursing by the Graduate Program in Nursing of the UEM. E-mail:} anderson0788@hotmail.com

6_{Nurse. PhD in Health Sciences. Professor at UEM. E-mail:}_{kikanovic2010@hotmail.com}_.

Corresponding author: Fernanda Gatez Trevisan. Address: Avenida Colombo, n. 5.790, Jd, Universitário, Maringá-PR.

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Therapeutical itinerary of a young person affected by stroke

RESUMO

Objetivo: conhecer, por meio do itinerário terapêutico, os comportamentos que influenciam na busca por cuidados de um adulto jovem que vivenciou o Acidente Vascular Encefálico (AVE). Métodos: estudo de caso, de abordagem qualitativa, realizado em um munícipio do interior do estado do Paraná, Brasil. A coleta de dados foi realizada entre os meses de dezembro de 2014 e fevereiro de 2015 e se deu por meio de entrevistas em profundidade. Os dados foram analisados a partir da análise de conteúdo, modalidade temática. Resultados: as categorias que emergiram do processo analítico foram: “A influência das relações familiares sobre as escolhas na trajetória de recuperação após o AVE”; “Influência do vínculo e acolhimento profissional nas escolhas de cuidados da pessoa adoecida” e “A influência da religião e da medicina alternativa nas escolhas por tratamentos e cuidados”. Conclusão: foi possível observar como um adulto jovem acometido pelo AVE compartilha comportamentos e escolhe os cuidados que deseja receber, sendo suas atitudes diretamente influenciadas pelos comportamentos dos membros familiares mais próximos.

Descritores: Assistência Integral à Saúde; Acidente Vascular Encefálico; Doença Crônica; Relações Familiares; Estudo de Casos.

RESUMEN

Objetivo: conocer, a través del itinerario terapéutico, los comportamientos que influencian en la búsqueda por cuidados de un adulto joven que vivenció el Accidente Vascular Encefálico (AVE). Métodos: estudio de caso, de abordaje cualitativo, realizado en un municipio del interior del estado de Paraná, Brasil. La recogida de datos se realizó entre los meses de diciembre de 2014 y febrero de 2015 y se dio a través de entrevistas en profundidad. Los datos fueron analizados a partir del análisis de contenido, modalidad temática. Resultados: las categorías que surgieron del proceso analítico fueron: "La influencia de las relaciones familiares sobre las elecciones en la trayectoria de recuperación después del AVE"; "Influencia del vínculo y acogida profesional en las elecciones de cuidados de la persona enferma" y "La influencia de la religión y de la medicina alternativa en las elecciones por tratamientos y cuidados". Conclusión: fue posible observar cómo un adulto joven acometido por el AVE comparte comportamientos y elige los cuidados que desea recibir, siendo sus actitudes directamente influenciadas por los comportamientos de los miembros familiares más cercanos.

Descriptores: Atención Integral de Salud; Accidente Cerebrovascular; Enfermedad Crónica;

Relaciones Familiares; Informes de Casos.

INTRODUCTION

Chronic health processes are characterized by slow developmental pathologies that last for long periods and have long-term effects, which cause diseases and are currently the main cause of mortality in Brazil(1)_{. Brazil has} the highest mortality rate due to heart and cerebrovascular diseases in all Latin American countries, and one of the highest rates of risk of premature death due to stroke, reaching 39.7% for men and 30.5% for women under 70 years old. An important factor that favors the

maintenance of this situation refers to the great difficulties in the implementation of actions promoting health and preventing injuries in an efficient way(2,3)_.

The public policies aimed at people with chronic conditions advocate that care must happen in a comprehensive way, focused mainly on the modifications of daily habits and adherence to therapeutics. Each institution and/or social actor in the health area needs to be seen as an indispensable component of the comprehensiveness of care, as in a circuit, in which each individual races to obtain the care that he/she needs(4)_.

However, the Brazilian health care organization is still characterized by an intense fragmentation of services,

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programs, actions, and practical assistance, thus perpetuating the incoherence between the provision of services and the care needs(5,6)_{. So that a} quality care is provided to people with chronic diseases, it is essential to consider their behaviors, which are constructed and shared in the social, cultural, and environmental context, managed by individuals and the community(7)_.

Health professionals, when observing the behaviors and choices of the sick person, can provide strategies that guarantee access in a timely manner and in a continuous way. In order to do so, it is necessary to build a closer relationship by forming bonds with the team and, consequently, promoting a better adherence to the treatment, prevention and monitoring of risk factors(6)_.

One's choices are constructed subjectively, individually, and collectively, under the influences of various factors and contexts that will define actions. Therefore, when these choices are taken into account, more

comprehensive and contextually

integrated care practices are

implemented, which composes the Therapeutic Itinerary (TI)(8)_{. Thus, TI} refers to the construction of a path on the succession of events and decision making of an individual or group, having as main objective the treatment of the disease(5,9)_.

A disease that often leads to long and difficult TI is the stroke. In the case of young adults, stroke has been considered an uncommon pathology, but when present, it is responsible for high morbidity and mortality rates, possibility of recurrent events, and physical and emotional sequelae(10,11)_{. In addition, the} personal, family, and socioeconomic consequences of the disease can be devastating for affecting young individuals at the top of their productive age(10)_{. Therefore, it is necessary to} develop studies with young populations victims of stroke in order to improve physical and psychological rehabilitation techniques, which will reflect in the improvement of the patient’s quality of life(11)_{. Given this context, the objective} of the present research was to know, through the therapeutic itinerary, the

behaviors that influence the process of seeking care by a young adult who experienced stroke.

METHODS

This is a descriptive, analytical case study with qualitative approach. Such method allows the researchers to understand the complexity of the field studied from observation and reflection on a family’s experience(12)_{. This type of} investigation is appropriate since the researcher has the possibility to describe and analyze how the multiple aspects of life present in the context of illness are interconnected.

The search for the study subjects was made through a survey of young adults affected by stroke along with the nurses of the Family Health Strategy (FHS) in the 34 Basic Health Units (BHU) of the city of Maringá - PR, Brazil. Researchers collected data such as name, address, and telephone number of persons who meet the following inclusion criteria: being between 19 and 29 years of age, having been diagnosed with a stroke in the last two years, living with a family member, and accepting consecutive home visits.

The survey revealed only one subject who met all the established criteria. In this way, the first home visit was scheduled, guided by the Community Health Worker (CHW), with the purpose of explaining the objectives of the research and how the data would be collected. In-depth interview was used, in which the participant was invited to recall her life story from the following triggering question: “Tell us about the path for the search for care from the beginning of the first symptoms to the present day”. Eight visits were made in the months of December 2014 to February 2015, of which six were audio-recorded in a digital device. The interviews were conducted by a nurse with experience in collecting qualitative data, accompanied by two previously trained nursing students.

A research diary was also used to record all expressions unable to be captured in the audio recording, as well as other forms of communication with the study participant. At the end of the

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collection, all transcripts were inserted into the search journal. The final corpus, result of the transcriptions added to the notes in the research diary were submitted to content analysis in the thematic modality, as proposed by Minayo(12)_{. Firstly, a thorough reading of} the material was carried out by two authors. The text was printed in different colors and then the sections were cut and grouped according to their similarity, forming the three categories of the study. The construction of the categories was organized in order to demonstrate the TI pathed by the family in search of care for the sick member. In this way, the categories were named: "Influence of family relationships in the choices during the recovery path after stroke", "Influence of professional bond and welcome in the choices of care of the sick person" and "Influence of religion and alternative medicine in the choices of treatments and care".

In order to guarantee the participant's anonymity, she will be called by the name of the gemstone Alexandrite, which represents the ability to regenerate both in the physical and spiritual realms, as she recovered without sequelae of two events of stroke.

This study is part of a larger study entitled “Sickness experienced by young adults and their family members”, approved by the Ethics Committee for Research with Human Beings of the Universidade Estadual de Maringá, under the opinion no. 862.749. All the ethical requirements of Resolution 466/2012 of the National Health Council were respected. The participant signed the Informed Consent Form in two copies.

RESULTS

For a better visualization of the participant’s path, the presentation of the findings and their discussion will be centered on the second stroke. Table 1 shows the characteristics of the patient and her family and the main events in her illness process. General characteristics of Alexandrite and family Alexandrite, a 24-year-old woman, faces a 12-year illness. She is married to Opala, 30, an industrial worker and electrical engineer student, with whom she maintains a strong relationship of trust and otherness. They both have a seven-year-old daughter. They live in a lot owned by the mother-in-law, which contains two houses with no wall between them. Her sister-in-law, sister of Opal, lives in the other house. As far as the family relationship is concerned, Alexandrite experiences daily conflicts with her mother-in-law and sister-in-law for various reasons. The greatest support she received during her recovery, in addition to her nuclear family, was from the church.

First stroke

It occurred at the age of 12 deriving from excess anesthesia due to surgical procedure for hydronephrosis. After the first stroke, she was hospitalized several times due to events of urinary tract infection and kidney stones. She began medical follow-up for hypertension in 2012.

Second stroke

It happened at the age of 23, as a complication of hypertension. She lost her movements during the night, was referred to the hospital, and remained hospitalized for 10 days, with right hemiplegia. She had a good recovery, and there were no evident physical sequels in her body. However, she has some memory losses. Table 1: Presentation of the participant’s path. Maringá (PR), Brazil, 2019.

The speeches were organized into three categories. The first was described as support and family influence on the choices of care, the second discussed the professional care received by Alexandrite and her family, and the latter sought to describe other forms of care chosen by her, together with her family.

Influence of family relationships in the choices during the recovery path after stroke

Alexandrite's family emerged in her speeches as the main source of support in her recovery. Her husband, brother and sister-in-law appeared as primordial pieces in aiding her recovery, with strong support from the extended family.

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My husband gave me strength. When I started walking he would grab my arm and we would walk with me in the hospital (Visit 04). This last time my brother helped me, we had many expenses (...) he helped paying the physiotherapist (Visit 02).

My sister-in-law helped me a lot while I was sick. She took care of my daughter, took her to school; she helped me a lot (Visit 06).

At this stage of life, Alexandrite has built her choices and behaviors mainly influenced by the presence of her young daughter, which appeared as a motivating factor for her recovery, influencing her to correctly follow diet and treatment:

What gave me more willpower was my daughter. Even when I could not, I tried it. I used to say, some time I'll make it [...]. I do everything for her, even taking my medications correctly (Visit 01).

The positive relationship of love and companionship she maintains with her husband also emerged during data analysis as a driving factor for the adoption of good health behaviors and healthier living habits.

I ride my bike, do exercises with the rubber band [...]. My husband has helped me, giving me strength (Visit 01).

He takes care of me, he tells me to eat whole grain bread, whole grain cracker. Now we have found a type of salt that does not have much sodium and the food does not run out of salt at all. When we go to the market he sees all the packaging, I do not see anything (Visit 02).

In this category, the family presented as an influencer in the care choices of the study participant. In the course of her trajectory, the relatives were worried and organized to offer the care in the best possible way.

Influence of professional bond and welcome in the choices of care of the sick person

Throughout her search for care, Alexandrite was supported by health professionals, especially the urologist doctor who has accompanied her from

childhood. The long period of relationship between the patient and the doctor allowed the formation of a strong relationship of trust, which contributed positively to her adherence to the treatment.

Every week I used to have a follow-up [at the regional hospital]. I used to go there, and he [the urologist] used to see me. Everything through the Unified Health System, as if it was a private appointment (Visit 01).

The relationship of trust between the doctor and her is very intense to the point of considering the doctor as one of the most important people in her life.

In my life, it is God first and then the doctor who takes care of me [urologist], because whenever I needed it, he helped me a lot (Visit 04).

In addition to this relationship of trust with the doctor, she also received crucial help from other health professionals, such as the massage therapist who treated her during her recovery.

The massage therapist came here at home, he made my arm crack, and then I was able to lift my arm, because before this, I could not. He saved me! (Visit 05).

Although Alexandrite reported establishing great bonds with the health professionals who accompanied her, she also made criticisms about the attention provided by the Unified Health System (SUS) in what concerns, mainly, the delay in scheduling appointments. In addition, she reported not knowing the work of the FHS, stating that it did not exist in her neighborhood at the time she fell ill for the second time by stroke.

I think SUS also had to improve in everything. Because there is waiting queue for simple examinations, doctor, health unit…it is everything in that queue. I think it could be simpler and easier, although we have conditions, we can have a private health plan [...]. The FHS did not exist at that time; it began to exist now (Visit 01).

In the second stroke, the family made little use of the public health service

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because Alexandrite's husband was contemplated with private health plan as a salary benefit in his work. Thus, the search for care at that time was almost exclusively in the private healthcare network, except for the hospitalizations, which occurred in a public hospital.

Influence of religion and alternative medicine in the choices of treatments and care

Although a strong bond with the health professionals still remains, Alexandrita also uses other means for her treatment and recovery such as the use of teas, as taught by her mother. But even choosing alternative ways to achieve healing, she had never interrupted her medical treatment:

I have taken tea against kidney stones because it helps to clean the kidney and relieve the bladder [....]. These teas are natural, do not bring harm, and do not disrupt the treatment (Visit 05).

The speeches revealed the family influence on the participant's religious choices. In addition to the use of teas, she sought healing through spiritual healers, prayers and vows.

This thing of spiritual healers, I believe very much in the old women [who do it]. They do the prayers, and when I have stomachache or something like that, I go in the old women and I get better right away! Some time ago I had difficult breathing and she has her handkerchief, she makes the name of the Father, makes the prayers, and after three blessings you do not feel anything else (Visita 05).

When I became ill, I vowed to go to Aparecida do Norte to light a candle with my size if I got to be well. So, I paid my vow (Visit 04).

One can see how spirituality influenced the daily life of Alexandrite, who attends church with assiduity. Her conversion to the evangelical church occurred after the second stroke, when the pastor made consecutive visits at her residence to pray for her recovery. It was then that she regained her movements and then actively participated in the services of a Protestant church:

I pray, I attend the Universal Church (...). When I was sick, the pastor came, prayed,

and I said when I got better I would go to the church (...). I asked for health so that God would heal me completely. I go to this day, I have not stopped going to church for a year and four months (Visit 02).

In addition, the faith she maintained during the course of her illness was very significant and influential in her recovery. In addition, the comprehensiveness between the support of the professionals, the family and the culture was responsible for encouraging adherence to treatment, with the consequence of the rapid recovery of the movements after illness.

DISCUSSION

In constructing Alexandrite’s TI, it is observed that, in the face of the need for help, the first sector to which she resorts is her family. In the majority of cases, in the face of living with a chronic condition, the family worries about it, performs home care, and influences the search for health professionals. The family is also considered a great influencer of the choices and behaviors of its members(13)_. Although the family has an important role, the support of the health professionals and the religion are dimensions that also directly influenced the participant’s choices and behaviors. In this sense, in order to provide a quality care, it is necessary to identify the support network of the patient, since it provides the health professional with subsidies to plan actions that support the family while enables home care(5)_{. In} addition, understanding the process of family reorganization enables health professionals to identify the real demands of the group in order to minimize their desires and implement strategies with and for the family, valuing their potentialities, involving them in care(14)_.

The strong bond that the participant of this study formed with the health professionals that have accompanied her from childhood appeared as an important factor influencing therapeutic adherence. The trust in the health professional, especially in the physician, is usually constructed with dialogue, respect, resolution, confidentiality, professional

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posture, besides non-verbal

communication and active listening to the patient, promoting patient autonomy and a trust relationship(5, 15)_.

Strengthening the bond occurs when the professional makes room for the sick person to expose their opinions, fears and anguish regarding the treatment, especially when it is a chronic condition. In addition, a good relationship between the professionals and the patient, with room for dialogue and decision making,

allows a better adherence to

treatment(15)_.

However, even though the strong bond with professionals was present, the public health care has been leaving gaps in the evaluation and monitoring of the participant's health conditions. For some patients, the search for private services usually comes before contact with the public service(16)_{. In some situations,} healthcare plans have emerged as a gateway to SUS, due to referrals for hospital admission.

In the case of the participant of this study, her search for care started in the public service and migrated to the private health plans. The SUS service that she used the most was the hospital service when she was in need of hospitalization. However, she said that she did not know the work of the FHS, showing that there was little link between her and the basic health service of SUS.

This fact demonstrates that the health care model practiced by the SUS is still focused on healing, especially on acute diseases and/or complication of chronic diseases. The failure of systems responses to the health needs of people with chronic conditions is a universal problem and needs to be addressed(17)_{. In} order to do so, it is necessary to train professionals to be more sensitive and empathic to provide holistic and humanized care with a view to the family unit, with all its complexity(14)_.

Regarding cultural aspects, in which the practices of spirituality and religiosity are manifested, they appear as a means of seeking emotional comfort for the anguish generated by the disease(18)_. Alexandrite’s reports revealed that religion was crucial in the process of health recovery and has always accompanied her in her path, sometimes

in moments with spiritual healers, in the Catholic Church, sometimes in the evangelical church. What was important to her was the spiritual support and prayers that sustained her hope for improvement. Such practices appear with such frequency that one can affirm that the cultural aspect was one of the most significant in this TI.

Through spirituality one can receive emotional relief and a sense of belonging to a group, giving a unique comfort to the suffering imposed by living with the chronic condition(14,19)_{. In this sense,} professionals need to recognize spirituality as a valuable tool in the health-disease process, which cannot be ignored, but respected, because this encourages families to face such situations(14)_.

In addition to the manifestation of faith in God, the interviewee also reported the frequent use of teas. In this case, family support and the cultural aspect are intertwined, as the family usually teaches and provides the plants to make the teas. This kind of knowledge is acquired through family experiences. This demonstrates how one constructs oneself collectively and shares with the people closest to them their choices and behaviors(5, 16)_.

Finally, when the health professionals know the paths taken by families and their sick members, they can construct a map of the weaknesses and strengths found in the process. Knowing these dimensions gives the professional the possibility to build strategies and actions that support and strengthen the sick person and his/her family in the process of seeking care, promoting a better adherence to treatment and quality of life.

FINAL CONSIDERATIONS

The TI has emerged as an important strategy for visualizing the weaknesses and strengths of the family and the patient in the process of seeking care. In addition, it revealed how the patients share behaviors and choose the care they want to receive by being directly influenced by the attitudes of the closest family members.

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In addition, the bond and the relationship of trust built together with the health professionals directly influence the adherence or non-adherence to the treatment. The cultural aspect appeared in this research as an important factor in the family strengthening and emotional stability of the participant. The choice of different religious cultures was also strongly influenced by the family. Thus, the construction of patients' TI by health professionals is crucial to identify the weaknesses and strengths that the family faces in the process of seeking care.

This study has limitations as it did not interview all the family members of Alexandrite, which would enrich this research with other perspectives. However, the results are valid, considering that the intention was to know in greater depth the aspects that involved getting sick by stroke in youth. Thus, it is suggested that further studies with other approaches be carried out in order to deepen how the behaviors of patients towards treatment are formed and influenced, especially among young people.

Individual contribution of authors: Trevisan FG; Laqui VS; Sanches RCN and Rego AS: participated in the design and writing of the project; data collection, analysis and interpretation; writing of the article and final approval of the version to be published. Salci MA and Radovanovic CAT: participated in the 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: 28/09/2018 Accept in: 31/01/2019

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