Care performed by family caregivers of children submitted to hematopoietic stem cell transplantation*

ABSTRACT Objective: to know the care provided by family caregivers of children submitted to hematopoietic stem cell transplantation. Method: the Grounded Theory was used as methodology. The study comprised four sample groups, comprising 36 caregivers. Data were collected by semi-structured interviews and analyzed according to the coding proposed by Strauss and Corbin in three phases: open, axial and selective. Results: eight propositions were identified for the care provided to the child in the researched context, namely administering medications; attention to cleaning issues; care with water and food intake; care with the body; experiencing protective isolation; addressing the child’s need for emotional support; addressing the child’s self-care; and facing complications. Conclusion: the different aspects in which the caregiver acts in the care of the child were understood. Such care equips the health team to elaborate measures for guidance and preparation of home care that are effective and directed to the needs of the patient and their family. The understanding of the care that they accomplish enables the caregiver a greater understanding of their role, as well as of the decisions they will make by their being under treatment.

In spite of the quantitative approach in research on HSCT, the literature on the caregiver in this scenario has been growing in recent years and strengthening its importance for transplantation. These surveys are mainly associated with issues about their quality of life, overload and impact or influences that being a caregiver entails in their private or social life (1,3,5) . However, although the care that is needed in the post-HSCT period can be identified (7) , there are no studies aimed at describing and understanding the care that these subjects actually perform and this work is dedicated to this knowledge gap.
We tried to answer the question: What are the care that the family caregiver of a child submitted to hematopoietic stem cell transplantation performs when the care happens to occur within the home environment?
To answer this question, the objective is to know the care taken by the family caregiver of the child submitted to hematopoietic stem cell transplantation.

Method
The present study used the Grounded Theory as methodology and the symbolic interactionism as a theoretical reference. The Grounded Theory allows the creation of a theory based on data from a given social experience through the identification, development and relationship between concepts, which is given through a thorough comparative analysis, strictly related to the collection of data in a process called circularity of data (8) .
Symbolic interactionism, in turn, is a perspective of empirical social science that seeks to understand human behavior by analyzing the actions, interactions and reactions of individuals through the construction of meanings and interpretation of the identified symbols (9) .
The study was carried out in a Bone Marrow  sample group and so on, as proposed in the grounded theory.
The data from the first sample group led to the hypothesis that the experience of home care in CTA was complemented by home care after leaving this environment and by returning to daily life, raising the question whether caring in CTA and in private homes would have similar characteristics or not. Therefore, the second group was composed of seven caregivers who, during the outpatient follow-up, remained in temporary, supportive or private homes, but at the time of the interview they were already in their home address.
Data from the first two groups led to the hypothesis that the place where care is performed after hospital discharge influences the meaning of the actions and interactions that occur in home care. To elucidate this hypothesis, the third sample group was composed of 11 caregivers who returned straight to their own home after discharge.
The data from the three previous groups raised the hypothesis that facing more than one transplantation A pilot interview was conducted prior to the beginning of the data collection, and data from this interview were not considered for the research results. This pilot interview made it possible to adapt the instrument, which was also modified at each new interview, based on the obtained information and on those that were still sought, as proposed by the methodology. To perform the data collection, external interviewers were used to avoid biases and ethical dilemmas related to this choice.
The researchers followed an action plan to develop this proposal, composed of the following steps: feasibility; selection; negotiation; training; and follow-up. The description of this action plan and of this experience with an external interviewer is found in an article published in 2016 (10) . In the presentation of the results, the speeches of the participants will be followed by the acronym SG, representing the sample group to which they belong, and the letter P, identifying the participant within the sample group. Some analytical tools were used, such as the Nvivo10 ® support software for storing and organizing collected data, data analysis and results presentation; the writing of four-type memoranda (methodological or emerging, reflective or observational, conceptual or theoretical and explanatory of model description (11) ); and drawing diagrams. Data analysis was performed using the coding method proposed by Strauss and Corbin (12) , subdivided into three stages: open, axial and selective coding. The outsourced external interviewer did not participate in the analysis of the data, which was done by the main investigator after each interview and before the next one. The discussion with the other researchers was held through the shared use of Nvivo10 ® and in face-toface meetings. There were no disagreements between the authors, since the methodology presupposes that the phenomenon is based on the data and this was crucial for the construction of the theory in this study.
The phenomenon under study proved to be a basic social process, so we considered the use of the coding paradigm (12) to explain the organization of this phenomenon, which was then structured into five

Results
The proposed theory was composed of 19 concepts,  With regard to "care with the body", the care given to the child involves protection against the sun, the use of a mask, manipulation of the catheter and maintenance of good physical appearance, so the family routine is also With regard to "addressing the child's need for emotional support," we noticed that the child is fragile and therefore emotional support is an important care. In this sense, the caregiver tries to make the environment more welcoming, seeks to be positive and Regarding "the child's self-care", it is proposed that the caregiver, in addition to provide care, should also address the child's self-care. They recognize that this is important, realize the child's efforts to care for themselves, encourage them to take care of themselves, and even feel relief when there is a collaboration for care: Finally, "facing complications from the treatment" implies that clinical complications are, to some extent, expected in the HSCT process, which, in some cases, leads the caregiver to understand the patient's situation as adequate even when there are signs or symptoms of a possible complication. This also generates a constant state of alert or fear that these situations may occur, which is why the caregiver starts having attitudes that aim to previously identify these complications. There in the post-HSCT period due to the lack of guidelines on what should be expected, but the more predictable a situation is, the lesser the negative impact for the caregiver, who may assume different roles (4) .
In addition to the instrumental care, subjective, emotional and social care were also identified, such as coping with social isolation; adequacy of the family routine to the care needs of the sick child; meeting the child's emotional needs; and promoting self-care in order to boost the child's autonomy.
The issues related to social isolation and selfcare are complex for the caregiver, since they are not prepared to deal with the limits and barriers that such care imposes (16) . Social isolation is important for HSCT because it prevents possible cross-contamination, but it is a tough reality to be experienced by both the patient and the caregiver (16)(17) .
On the other hand, the encouragement, strengthening and adherence to self-care are actions that strongly relies on the family caregiver and enable the patient to continue treatment, as they encourage the acceptance of the parient's physical, eating and social restrictions, among others (7) . However, it is difficult for the caregiver to know how much he or she needs to assign self-care to the patient, and how much this may or may not be beneficial to treatment (16) .
The importance of caring for the emotional needs of patients submitted to HSCT is crucial, since psychosocial problems lead to changes in the child's health-related quality of life over time (18) . Thus, the relevance of the previous preparation of the family caregiver to deal with the emotional issues of the patient is emphasized (4) , especially when considering that the emotional support of the family caregiver is a facilitator for the patient to overcome the difficulties of the treatment (17) .
This study has as a limitation the fact that it was carried out in a single hematopoietic stem cell transplantation center, which, in part, includes the experience at the national level, since it serves patients of all the regions of the country; however, it does not present the scope of the caregivers' experience in an international scope. Thus, another study to be carried out in a different nationality is suggested, so that the realities of the investigated phenomenon can be compared.
The concern with the family caregiver in the scope of HSCT is a growing reality. We believe that this work has added to the construction of this knowledge, since, in describing what types of care these subjects perform, it allows the understanding of their real needs of preparation and orientation for action. It should be emphasized that the caregiver's preparation for home care is an action of the health team, especially the nurse, which has an expanded view of health care that goes beyond the hospital scope, with an impact on the results of transplantation, development of complications and on health care.

Conclusion
The objective of this study was reached as it revealed the types of care carried out by family caregivers of children submitted to HSCT. Such care is multifaceted, encompassing instrumental, emotional and social aspects and, because of this, they require extensive preparation from these subjects, which covers not only the transmission of technical guidance, but also the strengthening and direction for action in the different aspects of care that will be carried out.
There is no way to minimize the role of health professionals in this situation; it is up to them to know the care taken by the family caregiver and from them develop an action plan directed to the improvement of this individual as caregiver and human being, with feelings, expectations, doubts and needs to act with the child, with their social network and with themselves.
Therefore, we consider that the results of this study represent an advance for the strengthening and organization of nursing actions in hematopoietic stem cell transplantation services, since they train these professionals to recognize the caregiver as a collaborator and to better develop their professional role so as to provide to the caregiver and the patient a care that meets their demands, that is more effective, without suffering, and providing greater understanding to the caregiver about the actions they perform and the decisions they will need to make.
This study presents the limitation of involving only pediatric caregivers; therefore, similar research should be conducted considering the caregiver of the adult patient so that they can understand the similarities and divergences between the informal care of children and adults in the period after hematopoietic stem cell transplantation.