GUIDELINES FOR THE SELF-MANAGEMENT OF PEOPLE SUBJECTED TO HEMATOPOIETIC STEM CELL TRANSPLANTATIONS

ABSTRACT Objective: to know meanings and demands for the self-management of home-based care for Hematopoietic Stem Cell transplant recipients and to discuss these demands with nurses, aiming at proposing guidelines. Method: a qualitative study based on the convergent care research study developed between December 2020 and August 2021 in a Hematopoietic Stem Cell Transplantation Service from Juiz de Fora - Minas Gerais, carried out in two stages: semi-structured interview and small group discussion. 17 people participated in the study: 12 transplanted individuals and five nurses. Data analysis was supported by the Iramuteq software and by the synthesis and theorization proposed by convergent care research. Results: in Stage 1, performed with transplanted patients, six classes emerged that were interpreted in four subcorpuses and pointed out the meanings and demands for self-management. In Stage 2, performed with nurses, the demands found in Stage 1 were submitted to reflection in the discussion group and ratified. Based on the findings, the guidelines to meet the health self-management demands of transplanted people were as follows: professional monitoring, adherence to the treatment, maintenance of the prescribed care measures, search for guidelines and information, implications of the diagnosis, restoration of immunity, inclusion in the job market, physical limitations, and changes in everyday habits. Conclusion: the guidelines proposed reflect the understanding of the needs experienced for an individual to adapt to the health/disease process in the post-Hematopoietic Stem Cell Transplantation phase, and express the importance of carrying out strategies that promote self-management.


INTRODUCTION
With the advancement of science, the outcomes in chronic diseases have been changing, thus highlighting strategies that promote independence and quality of life, based on a new patientcentered care paradigm, aiming at chronicity self-management 1 .
Self-management is a strategy supported by educational actions aimed at building skills in individuals, their family members and/or caregivers in the face of decision-making on various aspects related to illness in the chronicity stage, of biological, psychological, social and spiritual origin, and in a relationship of mutual respect and planning [2][3] .Its interventions are focused on training individuals, transforming them into active partners in the health field by providing diverse information and skills that promote increased aptitude for health self-management, this being a continuum in which individuals present various skill levels 4 .
In onco-hematological diseases, Hematopoietic Stem Cell Transplantation (HSCT) is a complex and aggressive method that requires specialized care in several professional areas, in addition to being a long treatment that exposes people to a series of complications demanding care to avoid life-threatening situations and quality of life impairment 5 .
Individuals are understood as multidimensional beings; therefore, a person subjected to an HSCT may have several dimensions of their life affected.Considering people as complex beings, complexity should not be thought of only in terms of scientific advances; it should be sought in situations where it is apparently nonexistent, such as in everyday life, for example 6 .
In the HSCT context, there is lack of focus on self-management in the post-transplant follow-up period.Although this term is not clearly consolidated, the definitions of self-management and self-care have been used interchangeably and confusingly, as both concepts refer to a variety of methods and behaviors performed by individuals to manage their health and disease process in favor of positive results 7 .Thus, in health education, the importance of promoting self-management is highlighted, an innovative perspective where individuals are the protagonists in all stages of the health and disease process.
In the research scenario of this study, the health team created an instrument containing post-HSCT guidelines; however, lack of actions promoting self-management was verified.Given the problem, the following study guiding question emerged: "How do people living with an onco-hematological disease and who underwent an HSCT develop home-based health care self-management?" Considering the assumption that self-management can be an important tool for coping with difficulties living with the chronicity of an onco-hematological disease, the following study object was outlined: health care self-management for people with onco-hematological diseases subjected to HSCTs; and, as a general objective: "to know meanings and demands for home-based care selfmanagement of Hematopoietic Stem Cell transplanted patients and to discuss these demands with nurses, aiming at proposing guidelines."

METHOD
This is a qualitative and exploratory research study, with Convergent Care Research (CCR) as methodological framework.CCR uses the real environment as a research scenario and as that of the researcher's professional experience, making the question to be researched emerge in a junction between theory, practice and research, contemplating the conception, instrumentation, scrutiny and analysis phases 8 .

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The conception phase corresponded to choice of the theme, formulation of reflections about the research object, delimitations, the inter-relational process, arguments and contextualization that represent the elaboration of a research project.These aspects are detailed in the Introduction to this manuscript.
In the instrumentation phase, the research scenario, study participants and data collection instruments and techniques were defined.The data were collected at the hematology outpatient service of the University Hospital belonging to Federal University of Juiz de Fora (Hospital Universitário-Universidade Federal de Juiz de Fora, HU-UFJF).This sector was inaugurated in 2002 and is accredited by the Ministry of Health (Ministério da Saúde, MS) to perform autogenic and allogeneic HSCTs 9 .
The study was developed in two stages and had 17 participants, 12 of whom were transplanted people and five were nurses from this service.
The people/patients included in Stage 1 were those aged at least 18 years old with oncohematological chronicity, who were in the late HSCT phase in the period between 100 days and two years.The time criterion is justified due to the fact that the post-HSCT phase begins after hospital discharge, being subdivided as follows: immediate, a period of up to 100 days from the infusion of hematopoietic stem cells (HSCs), the stage in which most of the complications take place; and late, starting from 100 days 10 .In addition, the limiting post-transplant time of up to two years was established in order to cover a representative sample of participants, as the pandemic situation caused by the new Coronavirus (SARS-CoV-2) culminated in a reduction in the number of transplants.
The researcher herself recruited and selected the participants in the sector's HSCT record book and medical charts, verifying that 32 transplants were performed in 2019 and 21 in 2020, totaling 53 procedures.However, following the inclusion criteria, the potential transplanted participants totaled 52, and 48 phone calls were made.
The strategy used to make the calls corresponded to the transplantation order that was included in the book.In case of a person showing interest, the Free and Informed Consent Form (FICF) was sent by mail via Sedex, by email or through the WhatsApp messaging app.If in agreement, the person signed and sent a photograph or scanned document back to the researcher and the interview was scheduled after due reception.
The data were collected in from January 14 th to February 5 th , 2021, through interviews conducted by means of telephone contacts, with the aid of a semi-structured script consisting of diverse information to characterize the participants and guiding questions directed to the object of this study, referring to the changes, skills developed and needs after HSCTs.The interviews lasted a mean of 13 minutes, varying between five and 36.A total of 12 interviews were carried out and it was possible to notice that no new facts emerged from the seventh interview onwards.Data saturation was characterized by regularity of the information 11 .Therefore, another five interviews were conducted to confirm saturation.
It should be noted that 9 people refused to participate in the research, that eight possible participants died and that 19 calls were not completed, only rang or showed busy lines.
Once this stage was completed, Stage 2 was initiated, which consisted of a small discussion group.This is characterized as a living system, made up of human subjects who have their own language, culture and conscience 12 .It is based on Edgar Morin's Paradigm of Complexity 12 , which is assembled in line with the CCR methodology and must achieve cohesion, as changes and innovations depend on it 8 .
For this stage, the following inclusion criterion was defined: nurses working in the research sector, with seven potential participants.Of these, five nurses consented to their participation by signing the FICF.They were invited by telephone contacts and via the WhatsApp messaging app.The

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group met online on August 25 th , 2021, for 1 hour and 35 minutes and via a video call on the Google Meet platform.There, the demands found in Stage 1 were reflected on.
In all data collection stages, the testimonies were recorded and transcribed and anonymity was guaranteed through codes, using the letter "P" for patients and the acronym "ENF" for nurses ("Enfermeiro" in Portuguese), followed by the number corresponding to the order in which the statements were obtained.For all participants, impaired verbal communication aspects were defined as exclusion criterion.However, no one was excluded.
The scrutiny phase concomitant with the previous phases was carried out by the interaction between the researcher and the participants, through an approach between the individuals and conducting the investigative process to obtain data and proposals for changes in the care practice, promoted through individual semi-structured interviews that were carried out with the transplanted patients and in the small online discussion group, conducted with the sector's nurses.
In the analysis phase, in Stage 1, the data obtained from the individual semi-structured interviews were transcribed and organized in Word for Windows and submitted to lexical content analysis with the aid of the Interface de R pour les Analyzes Multidimensionnelles de Textes et de Questionnaires (Iramuteq) textual data analysis software.
Iramuteq is a software program for processing textual data that seeks to identify the structure and organization of texts, showing the relationships between the most frequently presented lexical spheres, based on words used in similar contexts, related to the same lexical sphere 13 .The Descending Hierarchical Classification (DHC) presents the Text Segment (TS) classes that have similar and different words at the same time as the TSs from the other classes, considering as consistent any textual material with a minimum retention of 75% (TSs) 14 .
The findings of Stage 1 were the meanings and demands for home-based care self-management of people subjected to HSCTs.In the analysis of Stage 2, with the small discussion group, the collected data were transcribed and organized in Word for Windows and consulted by the researcher who, based on the analysis of the testimonies, elaborated a synthesis and theorization as recommended by CCR 8 .The demands of Stage 1 discussed in this group were ratified and, based on these data, the self-management guidelines were organized.The research was carried out after due approval by the Committee of Ethics in Research with Human Beings of the aforementioned institution, made available on February 17 th , 2020, in compliance with Resolution 466/2012 of the National Health Council.

RESULTS
The Stage 1 participants were 12 patients: 50% female, aged between 20 and 68 years old, 42% in the predominant age group between 41 and 60 years old, 50% with Complete High School, 67% Catholics and 75% married.In relation to place of birth, 67% were from the state of Minas Gerais and the others came from the state of Rio de Janeiro.Regarding work activity, 50% were active, 25% were away from work receiving sick pay, and another 25% were retired.As for undergoing HSCTs, 58% did so in 2020 and 42%, in 2019.
In the textual analysis, the general corpus consisted of 12 texts/interviews, which were separated into 215 TSs with leverage of 175 TSs, which equals to 81.40% of the corpus.7,316occurrences emerged (words, forms or terms), 1,452 of which were distinct words and 816 with a single occurrence.
The analysis corpus was divided into four subcorpuses and six classes: Subcorpus A was comprised by class 6 (13.71% -24 TSs); Subcorpus B consisted of classes 4 (22.29%-39 TSs) and 1 (13.14%-23 TSs); and Subcorpus C was subdivided, comprised by class 5 (15.43% -27 TSs) and Subcorpus D, with classes 3 (17.71%-31 TSs) and 2 (17.71% -31 TSs).The DHC Dendrogram (Figure 1) is a graphic representation of the classes obtained from the interviews.The results were presented considering the topics that emerged and the order in which the classes appeared.The terms presented in each class (Figure 1) assisted in interpreting the findings; thus, the classes and subcorpuses were named by the researcher based on the analyzable words and the TSs.

Class 6: The cancer diagnosis and course of the treatment
This class includes the participants' reports about the cancer diagnosis history and their path in the search for treatment.
[...] the result was disturbing.[...] the Doctor removed two nodules that were in the intestine, in the rectum, where the colonoscopy test passes through, he removed two nodules.[...] Before the biopsy, it had already entered the second cycle, he said: "I'm sure it's going to be a relapse of the same cancer".Which was confirmed after the biopsy [...] (P 01).

Class 4: Needs and the importance of family support and professional monitoring in the health care guidelines
This class presents how the search for information regarding health care in the post-HSCT phase was carried out and the clarification of doubts, in addition to presenting the importance of the family members participating in the person's life in the face of a comorbidity and its treatment.The terms "consultation" and "husband" are the most frequent and significant, as they refer to the way of 7/15 obtaining diverse information for health care, received in follow-up consultations and by accessing the Internet, in addition to the support of family members, mainly spouses (husband/wife) throughout the process, from diagnosis to post-treatment.
[...] the information I seek is with my doctor.Because she talked to me a lot, she did the procedure and I follow what she says [...].I got information from her, my wife got information from the Internet, and we even have a friend who was diagnosed with me, on the same day [...] (P 11).

Class 1: Beliefs, feelings and support in the face of the health and disease process
In this class, the participants' perception regarding the feelings, beliefs and support of family members and health professionals in adapting to this new reality of life was presented.The term "God" stood out the most in the interviewees' testimonies and was associated with gratitude, hope and faith for a better health condition.The research participants understand that, at the onset of cancer and in the experience of its treatments, overcoming is related to positive thoughts and belief in God, so as to face situations over which human beings do not have control.
[...] you need to have positive thoughts, that it'll work out, that you'll succeed, putting God always ahead of everything.Because, thank God, it wasn't easy, but it came to an end, I went through the treatment well, I went through the recovery well, and I'm seeing God's hand at all times in my recovery.It's trusting and having faith that everything will work out (P 04).
Support from the family, meeting the needs that arise, and the health professionals' attention as a basis for care, were equivalent to support for the patients, contributing to a positive evolution of their health condition.
[...] the support from my family giving better support, they're always trying to see you better, sometimes holding back a little from going out, doing something that's not so necessary, and holding back a little with this pandemic (P 09).

Class 5: Adherence to the treatment after the hematopoietic stem cell transplantation
The participants' testimonies portrayed the care measures they adopted after their HSCTs.[...] I'm not going to abuse it, it'll jeopardize my immunity.I keep my distance, everything right, strictly following the issue of food, drink, to go out.[...] it's an eternal treatment, let's say, eternal with you, but that you, following the standards, are able to administer, so that you're not surprised by a relapse, anything from the disease [...] (P 06).

Class 3: Preparing for the changes in health care after the transplantation
The search for preparation to deal with the change in lifestyle after an HSCT was evidenced.Regarding the changes in health care, the limitation regarding physical disposition were reported, referring to lack of resistance to practice physical exercises, as well as the limitation regarding independence to perform activities of daily living.
[...] every time I go out, there's always someone with me, that part that changed, that I no longer do what I used to do.[…] I think that, after the transplant' I'm a little limited in things,'it's no longer the same in many ways [...] (P 02).

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In addition to that, after being asked how they developed skills and sought information for health care, the guidelines provided by health professionals were reported, as well as the pati'nt's and fam'ly's interest in seeking knowledge and information from the consultations and the Internet, aimed at preparing the individual to face this intense health care phase.
[…] I always read a lot on the Internet about this case, this transplant, I read a lot.I also got guidance at the hospital and they gave me quite a lot the day I left (P 04).

Class 2: Health care maintenance and concerns after the transplantation
The participants discussed about the changes in habits and post-transplant concerns.The pandemic was a term that showed significance, considering that a transplanted person already requires differentiated health care and represents a risk group for contamination by the Coronavirus (SARS-CoV-2), due to the frailty of the immune system that is still being reestablished after an HSCT.
[…] I try to improve, eat more types of greens, legumes and in terms of cleaning too, because even more now, with this pandemic thing, you have to be more careful with this gel alcohol thing, these things (P 10).
In addition to that, concerns were mentioned with situations arising from everyday life, such as financial support, apprehension about the future of their lives and other needs that arose as a result of an HSCT.
[...] I spend some time studying, because the job market is like this, weird.With this pandemic, we 'on't know the future, whe' I'm discharged from the INSS, I can be employed or not [...] (P 01).
[…] now, at the moment, I need to do this expertise, because I need to work, and I depend a lot on people [...] (P 12).
After analyzing and interpreting the results found in each class, a scheme was created that represents the synthesis of the guidelines, conferring visibility to the meanings and demands for the health care self-management of individuals who underwent an HSCT (Figure 2).For the analysis of these findings, it is important to emphasize that the "meanings" represent the participants' notion about the actions to self-manage their health care at their homes, and that the "demands" represent the individuals' needs and adaptation after an HSCT.
In Stage 2 of the research, a small discussion group was held, with the participation of five nurses.The group was led by the researcher with the aim of promoting reflections and dialog on the development of home-based health care self-management, in order to ratify or not the demands found in Stage 1 of the research, presented in Figure 2.
The methodology was validated by the participants, who consolidated the entire research process as totally relevant for capturing phenomena and issues that surround a person's complexity, in addition to contributing to the professional practice.
[…] the patient comes here for a consultation and, suddenly, he's already made a consultation with a whole multiprofessional team, he's already received a flood of information and hasn't processed it.[...] today I see the need for this transitional care, so as not to leave with so much demand, and so that he can organize himself.[...] So, understanding the patient's perception and the team's view about the transplant process, I think it'll be important for growth, in this way, as you're giving this feedback to me, but mainly to the sector [...] (ENF 01).In addition to ratifying all the demands encountered, the discussion group recognizes that they will serve as support for nurses to encourage the development of health care self-management for patients after an HSCT.

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[...] I believe that it's extremely important for the patient to be empowered even by the treatment, its limitations, the outcomes that they'll present in the short-, medium-and long-term too.[...] So I believe that its results will contribute a lot to the care that we provide to these patients, to the patients themselves, so that they are increasingly aware and empowered by the treatment and the disease (ENF 02).
The result of the analysis corresponding to the stages of this research pointed to the guidelines (Figure 2) for the health self-management of people subjected to transplants, which encompassed the importance of professional monitoring and adherence to the treatment, maintenance of the prescribed care measures, search for guidelines and information, the cancer diagnosis implications, the path to reestablish immunity, inclusion in the job market, physical limitations and changes in daily habits.

DISCUSSION
The elaboration of guidelines for the health care self-management of people subjected to HSCTs is linked to the meaning of the hematological cancer diagnosis.In turn, for the person and 10/15 their family members, this diagnosis represents a stressful factor, with the necessary treatments and their risks added to this, including death 5 .It is understood that the social stigma attributed to cancer is related to something incurable and with consequent death, which can negatively affect the individual's attitude towards the treatment, coping with the disease and its implications.
HSCT is a life-saving procedure, but it also carries an increased mortality risk, corresponding to a worldwide survival rate of 50% to 60% 15 .In addition to that, with hospital discharge, the person becomes responsible for self-managing the medication and care therapeutic plan, with the possibility of any error in following the treatment leading to serious complications, such as infections or pathology relapse 15 .
Based on the context of the interviews with the transplanted individuals, it was noticed that many of them linked success of the treatment to the commitment to carry out all the prescribed guidelines, such as medication adherence, vaccination schedule, adoption of a diet, social isolation, hygiene measures and contact precautions, seeking to take all the necessary precautions to restore the immune system.
After an HSCT, the individual and their family need to adapt to the demands that arise in everyday life and, due to complexity of the treatment, continuous monitoring and guidelines are necessary 16 .Some aspects influence the therapy, including the weak health condition and the demand for differentiated care measures, such as: dietary restrictions, social isolation and responsibilities with personal and environmental hygiene, among others 17 .Thus, family and professional ties assist the individual in developing these self-management actions, being marked by instructions and support.
In this perspective, preparation of the patient and family is a fundamental point for good results in the phase in question.Effective communication between transplant recipients, their family and health professionals emerges as a foundation for coping with comorbidities and proper management of possible complications that may arise.
Undoubtedly, cancer patients are more susceptible to respiratory infections when compared to the population without this pathology.This is due to the systemic immunosuppression caused by some tumors, as also by their treatments, represented by chemotherapy, radiotherapy and HSCT 18 .In view of these aspects and the proportion reached by the Covid-19 pandemic scenario, strengthening care was a concern due to the increased severity and mortality risks in these individuals [19][20] .
Another aspect that emerged from the results influencing self-management concerns emotional disturbances, which tend to destabilize the individual, negatively affecting their health status.In oncological diseases, emotional distress, spiritual disorders, anxiety and depression crises, physical exhaustion and changes in quality of life and survival may be present 21 .
Therefore, it is inferred that self-management should encompass the individual in their complexity, as it permeates singular and multidimensional aspects, involving them in an in-depth and integrated exposure of the dimensions that comprise them, facing the health and disease process.
Therefore, professional and family ties can constitute the foundation for self-management.Social support, positive thoughts, organization, motivation and the diverse information made available have already been identified by transplanted people and their caregivers as facilitating aspects for self-management, being used as coping strategies 15 .
The guidelines can assist in coping with difficulties encountered in everyday life.It is understood that self-management is an educational strategy for health care that can be applied in different ways, modifying the way in which an individual experiences their illness process, contributing to their autonomy and coping with different situations associated with the pathology and its treatments.
Family support and the presence of faith provide patients with an appreciation of life and help them cope with the negative feelings that afflict them, such as fear, anxiety and anguish 22 .Several strategies are used in coping with an oncological disease, with religiousness and spirituality as the 11/15 predominant ones 23 .The figure of God emerges as an essential point of support and well-being, and faith induces hope for a cure, providing greater control of the disease 23 .
It is noted that the emotional externalization experienced by a person with cancer demands support and protection, which is up to people who already play this role in their lives, especially the family 24 .This makes up the main foundation for coping with the pathology, representing itself as essential support in the HSCT phases, as it conveys security and companionship to the patient in the face of this delicate moment in their life 22 .
In addition to that, through its indispensable work, the Nursing team provides greater comfort to the patients through humanized assistance, offering care that goes beyond technique, promoting bonding, trust, friendship and empathy, thus valuing the biopsychosocial-spiritual dimensions 25 .
It is understood that the participating nurses' perception about the guidelines provided permeates the entire health and disease process.Thus, in the transplantation service, health education is considered one of the fundamental competences of nurses, which contributes to the care of patients and their family members, representing a facilitating strategy for health care 26 .
In addition to that, Nursing care configures a social practice that identifies equalities and disparities, involving communication and mutual influence between patients and nurses, acknowledging the inter-relational complexity of the individual with the care process 27 .From this perspective, it is understood that patient care implies a series of issues surrounding uniqueness, which must be considered when working on self-management strategies.
The importance of adopting the small group discussion with the nurses is highlighted, as a strategy to discuss the guidelines that encompass the meaning and demands for self-management of people subjected to HSCTs.From the perspective of complex thinking, conferring voice to the group was equal to uniting the single to the multiple; therefore, the single was not extinguished in the multiple and the multiple was part of the single 6 .
In this view, the nurses' unique reflections on self-management are part of multiple perceptions of the term in question.Although it was clarified in the small group discussion meeting, it is understood that there is still a need to strengthen it in the professional practice, as there is a perception attributed to it as a synonym of self-care.
Self-care concerns the attitudes and decisions taken independently of the interaction with a health professional, whereas self-management can be mentioned as a self-care subcategory, and its particularity is the collaborative roles played by patients and health professionals, together, for better chronic care management 7 .
In the evaluation carried out by the participants from the small group, the process of this research was considered valid and totally relevant to the current situation experienced in the posttransplant context.Research as a social practice means that, in the knowledge construction process, the researcher is inserted in a complex network of negotiations 28 .CCR is a promising method in qualitative research studies to be carried out by the Nursing and Health areas, due to their close relationship between the professional practice and research knowledge construction [29][30] .
As a limiting factor, from the CCR perspective, developing a study during the Covid-19 pandemic period emerged as a challenge to meet the premise of a research study, in an integrative and participatory way of thinking.In addition to that, this is a local study that investigated the demands of the population in question.

CONCLUSION
This study made it possible to know the meanings and demands for the home-based health care self-management of people subjected to HSCTs.In this perspective, the results point to guidelines (Figure 2) that reflect the understanding of the needs experienced for the person to adapt to the health/ 12/15 disease process in the post-HSCT phase, and express the importance of carrying out strategies that promote self-management.The guidelines proposed have the potential to improve the already existing post-HSCT guidance instrument in the service, being convergent with the improvement of the health care process.
The use of CCR in this study enabled reflections in the professional practice and enabled a different look on the relationship between theory and care; uniqueness and complexity of human beings.The researcher's immersion in the practice scenario, as well as the development of the other phases of the method, especially the analysis phase in the transfer process, enabled the recognition by professional nurses regarding the need to carry out health research studies that show the person's perception and the role of the health team in the face of the illness process, encouraging self-management.
Self-management in the post-HSCT phase can beneficially influence recognition and prevention of possible complications.It is believed that this study presents subsidies for the elaboration of care protocols that encourage self-management development, so that people know how to act in different situations and recognize possible complications that may affect them.Consequently, this fact may help minimize costs related to the health system, in addition to rendering individuals more proactive and confident in the face of their health/disease process.

Figure 2 -
Figure 2 -Guidelines for the self-management of people subjected to an HSCT.Data from the research prepared by the author, Juiz de Fora, MG, Brazil, 2021.