Introduction
Sickle cell disease (SCD) is a genetic disorder with a great magnitude in the Brazilian context. Although it is a treatable disease, SCD is still considered incurable and requires a continuous process of learning and commitment from the patients and their relatives vis-à-vis its clinical manifestations, care demands, and hospitalization needs due to crisis and complications 1.
Relatives involved in the caring of children facing a chronic disease experience several stressors that lead to harmful repercussions in different dimensions of their lives, both biopsychosocial and spiritual. In addition to the experience of having a child with a chronic illness being a stress factor itself, this reality brings continuous challenges that require families to mobilize new resources for caring 2,3. This situation affects the family's daily life, as it entails a new organization to tackle the challenge of giving care to a child, putting family members on a fatiguing path of visits to health centers for consultations, routine examinations, and treatment 4.
Despite the fact that chronic illnesses in children also affect the health of their family members, these are often seen as care providers, being included in activities performed at health centers that are aimed at giving them proper qualifications to assist their loved ones, although they are not the target of care actions 5.
The Theory of Human Caring, developed by North-American nurse Jean Watson from 1979 onwards, conceives human beings beyond their physical dimension, as it is guided by the concept of care and based on assumptions of existential phenomenology 6. The transpersonal approach of caring consists of a methodological strategy to offer professional care to people by encompassing the dimensions of body, mind and spirit. This approach occurs in an intertwined and indivisible manner through a "transpersonal" and, therefore, humanistic and metaphysical process, which embraces the sacred elements of existence and human experiences in an attempt to value and express reverence towards life 7. For that reason, transpersonal care can be understood as the essence of the Theory of Human Caring 6.
Reiki, in turn, is a therapy that consists of laying the caregiver's hands over the patient's body to transmit energy, promoting a feeling of well-being and positively stimulating the biological system 8. A meta-analysis study 9, a literature review study with randomized clinical trials 10, and an intervention study with a placebo group 11 revealed that Reiki has statistically significant analgesic effects. Besides, studies with the application of true and false Reiki (hand application in non-chakra points) identified lower levels of anxiety, stress 10 and depression in individuals 12, according to the Beck inventory. Reiki also has statistically significant results in the treatment of people suffering from fibromyalgia 13 and fatigue 9.
According to Jean Watson, care could help the person being cared for to develop self-control, self-knowledge, and promote changes in health-related habits. Therefore, care is configured as the essence of nursing, supported by the sensitivity between the bodies, minds and souls of two or more people. Consequently, in order to achieve transpersonal care, it is essential for nurses to assume that they are sensitive and to recognize their values, beliefs and prejudices, striving so that these aspects are not evidenced when interacting with the care-receiving person 14,15. For the purpose of developing a human caring theory, this author proposes the Clinical Caritas Process, which consists of ten carative elements 14,15:
1. Practicing Loving-kindness & Equanimity for self and other. 2. Being authentically present to/enabling/sustaining/honoring deep belief system and subjective world of self/other. 3. Cultivating of one's own spiritual practices; deepening self-awareness, going beyond "ego self." 4. Developing and sustaining a helping-trusting, authentic caring relationship. 5. Being present to, and supportive of, the expression of positive and negative feelings as a connection with deeper spirit of self and the one-being-cared-for. 6. Creatively using presence of self and all ways of knowing/multiple ways of being/doing as part of the caring process; engaging in artistry of caring-healing practices. 7. Engaging in genuine teaching-learning experiences that attend to whole person, their meaning; attempting to stay within other's frame of reference. 8. Creating healing environment at all levels (physical, nonphysical, subtle environment of energy and consciousness) whereby wholeness, beauty, comfort, dignity and peace are potentiated. 9. Assisting with basic needs, with an intentional, caring consciousness of touching and working with embodied spirit of individual, honoring unity of being; allowing for spiritual emergence. 10. Opening and attending to spiritual-mysterious, unknown existential dimensions of life-death; attending to soul care for self and one-being-cared-for. (15, pp. 131-132)
The results of a previous study 16 showed that after a care program based on the Theory of Human Care was deployed, there were some changes in the exercise of the caregiver role. Such changes went beyond the moment of care experienced and were sustained after the six meetings established between family members and the nursing professional.
This article was developed within the scope of such study 16) with the aim of examining the aspects of the moment of care experienced by participants, in an attempt to answer the following question: How do family members of children with SCD experience transpersonal nursing care mediated by Reiki? In order to answer that, this article aims at understanding the experiences of family members of children with SCD undergoing transpersonal nursing care sessions mediated by Reiki.
Methods
This is a qualitative study carried out under the Convergent Care Research (CCR) perspective, which included the participation of seven family members of children with SCD (six mothers and one father) from a municipality in Bahia, Brazil. Data was collected from August to October 2016.
The CCR was adopted for this study on account of the possibility of establishing integration between care and research, which provides grounding for a certain degree of approximation and distancing from the phenomenon studied at different moments, thus, allowing greater bond and participation of the person to be cared for and the deployment of innovative nursing skills 16. All the steps of CCR were carefully followed throughout the study: conception, instrumentation, scrutiny, analysis, synthesis, and theorization 16.
CCR is composed of a practical approach to removing obstacles and achieving transformative care assistance and, simultaneously, by a conceptual approach elaborated to abstract the findings identified during care assistance sessions, which expands CCR'S framework to new conceptual constructions and considerable discussions deemed as outstanding due to their innovative features. The zenith of CCR lies in the innovative convergence of the two approaches, which brings about the potential to transform care-related environments 16.
The whole group of family members of children with SCD attending the monthly meeting between family members and workers held in June 2016 at a Health Center for People with SCD (HCFWSCD), in Feira de Santana (Bahia, Brazil), were invited to take part in the research proposal. Among 20 family members who attended the August 2016 meeting, nine agreed to participate in the study.
During the first meeting, each family member was invited to participate in nursing consultations with Reiki sessions. Those who were interested scheduled their appointments. After a first interview during the moments of care assistance, these individuals received six Reiki sessions. Two participants dropped out, one of them due to their son's hospitalization and the other due to incompatibility of working hours, resulting in a sample of seven participants, who attended a total of eight meetings; two dedicated to hospital admission and discharge interviews and six to therapy sessions with Reiki, comprising 56 meetings of transpersonal care.
All participants were assisted at the HCFWSCD by the same researcher, who was undergoing a master's program training at the time. Each meeting lasted an average of one hour and twenty minutes, of which 40 minutes were devoted to the application of Reiki. The remaining time was used for a conversation between the nurse and the person to be cared for.
The data presented were recollected through the application of semi-structured interviews carried out before the first consultation and after the last consultation with Reiki sessions. Consultations and Reiki sessions took place during the afternoon shift in a private HCFWSCD environment specially designed for this purpose, where only the researcher and the participating family member were present. The consultation room was split into two spaces by a wooden screen. One space was conceived for welcoming and conducting interviews; it was decorated with plants, a water fountain, wooden furniture, carpets, and colorful pillows to create a comfortable environment for participants. The other spot was thought for the application of Reiki and was equipped only with a stretcher.
Consultations and data collection for this study were authorized by the Research Ethics Committee at Universidade Estadual de Feira de Santana, under approval protocol 1.254.708 and national register (CAE) number 45128015.8.0000.00.53. Each one of the participants was informed on the objectives of the research proposal and asked to read and sign the written informed consent form (WICF). In order to preserve the anonymity of participants, their speeches will be identified by the letter 'E' followed by a number, i.e., E1, E2.
All material collected was recorded and later transcribed by the researcher to be afterward submitted to thematic content analysis, considering the "context unit" as the unit of record 17. During the analysis, contents were subjected to floating reading, indepth reading, and the identification of recording units with meaning for the phenomenon under study. Finally, the units were grouped by similarity and then interpreted in light of the assumptions of the Theory of Human Care in Nursing 6.
The empirical data was elaborated following each care session, as a result of reflections made by the researcher about what was experienced with family members based on observation notes and field reports, taking also into consideration what had been expressed by the participants at the end of the cycle of sessions.
The interpretation of what was experienced and said by family members was categorized and confronted with the assumptions and principles of the Theory of Human Care by Jean Watson 6. The use of the Caritas Process, which would guide each subsequent meeting, came into being after the interpretation and reinterpretation of the set of statements and observations, making possible to highlight the needs of participants. Figure 1 summarizes the methodological framework adopted by this study, composed of four steps that begin with care sessions and follow each Reiki application, in addition to the fifth phase, which marks the end of the researcher's participation in the study after the six Reiki sessions.
All family members participated in the first meeting, whose purpose was to create an atmosphere of trust, decide on participants' admission, carry out the first interview, and organize the agenda of sessions. Subsequently, six meetings in which family members received Reiki sessions and were interviewed took place, followed by a collective meeting where all participants attended and were asked to share their perceptions/evaluations on the nursing care sessions. These encounters were mediated by a researcher qualified in Reiki therapy level 2, which allows the practitioner to work remotely and thus expand their potential of energy reach 18.
Results and discussion
This article sought to understand the experiences of family members of children with SCD based on their reports during transpersonal nursing care sessions mediated by Reiki therapy. Six mothers and one father of children with SCD who attended the Health Center for People with SCD agreed to take part in the study. The age group of participating family members ranged from 24 to 41 years, while children's age was 3 to 14 years.
The experience of transpersonal care sessions during nursing consultations allowed participants to perceive the importance of their spirituality and its relationship with their well-being and health. At the beginning of the sessions, many of them were experiencing conflicts with their beliefs. After therapy sessions, everyone reported they had been immersed in a sense of inner peace that evoked a reconnection with their beliefs in the divine:
In the first therapy session, I was already feeling a sense of peace, tranquility. I felt that a lot of energy was flowing through my body, I had gentle shock sensations that went through my body, which left me with a feeling of wellness and well-being. Therefore, since the first session I felt control over myself and peace inside of me. This peace made me realize that my son can be a normal child. (E1)
When I arrived here, I had lost my faith. I had no expectation that good things could still happen to me and my family. I only expected the worst. This disease condemns us to live in fear, but then I felt something so good here during the Reiki session that brought me so much peace [...] that my faith was renewed. (E2)
Whenever I come here, I dive into a sea of peace. I cannot find the words to describe it, but I know you understand. These minutes last like hours, time stops and here I just feel and believe that God loves me. (E3)
The changes attributed to the moments of transpersonal care sessions were regarded as engaged in mysteries and miracles, as they helped relieving tensions and recovering the hope and trust that had been abandoned since the discovery of SCD. Continuously dealing with chronic illnesses leads to experiences that hardly leave room for the remembrance of life prior to the diagnosis. Consequently, situations of well-being, levels of self-esteem, and cultivation of faith and hope may come to be perceived as unknown phenomena. After the sessions, these phenomena can be awakened and considered as miracles or mysteries 15, as reported by participants.
The process of experiencing a child getting sick is a complex one and may lead to fear hopelessness, and loss of the meaning of life. One of the participants reported the desire of abandoning the family for not being able to fulfill the demands that the child's illness imposes on relatives. Transpersonal care based on Reiki allowed these participants to recognize their fears and feelings, in addition to helping them act calmly in the face of adversities:
I am always very scared. I have had no peace since I discovered my son's illness. I am afraid of everything. It feels as if I am alone, but it was after the first time here at the Reiki session that I felt and realized that it was for my wellbeing. And I let this peace invade my life. May God forgive me, but I have even considered running away and leaving it all behind. Not now. I am now at peace and everyone realizes that at home. (E6)
After Reiki, I felt more confident. Spiritually, I am a new woman. Today I know how to balance my feelings. I know how to identify feelings that I did not know before. Everything was mixed up in me and I could not understand what I was feeling. Today I feel lighter. For me, Reiki was my life salvation. Nowadays I am much more balanced spiritually. (E7)
As stated by Jean Watson 15, when nurses mobilize the second element of the Clinical Caritas Process, honor is respected and the beliefs of the person being cared for are encouraged, enhancing its importance for the promotion and maintenance of health, and regardless of the fact of reaching medical science to provide care. During transpersonal care nurses act by nurturing the faith and hope of the system of beliefs of the care-receiving person.
The changes perceived in oneself reflect naturally on the living environment and in the intra-and-extra-familial relationships 19. According to participants, their child's disease causes constant irritability, impairing communication and promoting conflicts, especially between family members/ caregivers. As the transpersonal care and Reiki sessions reflected on their mood and anxiety levels, improvements can be found in the interaction with family members:
I get calmer and take better care of myself too; of my family, of my husband, to whom I had been indifferent lately. Nowadays we talk more. (E1)
My husband also says that I am calmer, that we talk more. (E4)
The testimonies by interviewees exemplify the positive effects of transpersonal care throughout the family system. It starts with the concept of family as a system, in which family members are regarded as interdependent units 20. However, despite the illness' impact on family's daily life, the main role of caregiver is assumed by the mother, who abdicates or reorganizes her personal plans and lives with an overload of care duties and social surveillance on her abilities of being a mother 21,22.
The well-being reported by the participants of this study highlighted the effects of Reiki when integrated into moments of care, which is similar to results from studies with adults who received Reiki therapy in preoperative situations and showed better control over anxiety levels, compared to the members of a control group 23. Adults with HIV/AIDS who received Reiki associated with music experienced a reduction of stress levels, anxiety, and depression 24. Besides, pain and fatigue reduction were observed in cancer patients 23.
When experiencing transpersonal care, the person heads up to an improvement in the sense of being in harmony with his mind, body and spirit 25. This provides an opportunity for people to recognize their condition, and this enables a reorganization of the perceived and experienced self 6.
According to Jean Watson, transpersonal care creates space for the elaboration of the inner healing of each person by establishing a connection between love and care. In this sense, such connection originates and enhances the processes of self-reestablishment, self-growth, self-control, and self-recovery 6.
Participants also reported that communication with their children almost always took place with impatience, aggressiveness and nervousness due to mood instability. However, after undergoing care meetings and Reiki sessions they felt relaxed. This well-being helped to promote the management of conflicts with their children in a harmonious and non-aggressive manner:
I feel lighter. As I said, I speak in a calm way. I am more patient, even with the boys (sons). I am more like that [...]. I believe it all started after Reiki. I am closer [to my family]. I am listening more [...]. I used to yell a lot. I stopped yelling. I am listening more, because before I used to listen whilst acting. I am being more patient, I am yelling less at my daughter, I am avoiding causing her stress. (E2)
I do not get so stressed with the boy [...]. I am calmer and this also reflects on him. Before, I used to be very nervous and yelled a lot. Now I breathe before complaining. (E4)
Another thing that changed was my relationship with my children. Now I am more patient with them. I yelled a lot at my daughter whenever she asked something. I got stressed. I would yell at anything she did. But not now. I stop to analyze her situation. She is a child, and as she has to stay home most of the time because of sickle cell disease, she messes with everything. (E6)
Changes in the pattern of mood, stress, and perceived discomfort in the body have been proved as positive results from the experience of family members with transpersonal care 16. Through the application of the fifth element of the Clinical Caritas Process, which implies motivation for the expression of feelings, family members recognize their emotions, accept or confront them, reassessing their attitudes towards the child suffering from the chronic disease 25,26. Based on this self-assessment, participants realize that they need to change their way of acting with their children, since they perceive their actions generate stress for both, and therefore adopt new and different attitudes guided with greater understanding and acceptance.
We observed an increase in the connection with the meaning of life, the acceptance of situations imposed by the history of each subject, and the acceptance of the condition of caregivers and family members of children with SCD. Participants now behave in a more fraternal and empathetic way in their social relationships:
A feeling of fraternity has awakened in me. One of looking at others with a different eye, with more love, more humility. This has also changed a lot. (E2)
The good thing about Reiki is what I just mentioned. It helped me find myself. Knowing how to deal with everyday things that I did not know how to deal with before. Reiki made me think positively, because feeling what I feel when I receive Reiki therapy makes me believe in good things. Before, I would just complain and think negatively. I become aware of my whole body, and only then I get out of bed, lighter, with no stress. I used to get up already angry. (E7)
Family members identify changes in their way of acting with the child, as they notice decreased anxiety and more tranquility and serenity during crises caused by the disease. This, in turn, gives rise to the feeling of empathy, when family members perform an internal movement of putting themselves in the other's shoes, in this case, the sick children, to better understand what they go through 27.
Family members notice changes in their way of acting with the child, such as depicting calmer attitudes during a crisis. The reduction of anxiety and stress favors caregivers being and feeling serene during children's crisis. Many of them recall the meetings of transpersonal care, calling to mind the well-being experienced with the therapy, in order to maintain emotional balance in the face of occurrence of adverse situations:
Today, I manage to keep control of situations, even when there is a problem (SCD symptoms). The other day he had a 39°C fever and I managed to stay calm, to medicate him and see if he needed to go to the doctor or not. Before, I used to get desperate for any pain (of the child). Now I have peace and I try to take a deep breath to be able to live together with my family in the best way. (E1)
I felt strong headaches and stomachache whenever the girl (the daughter with SCD) started to get sick. I would run to the bathroom (diarrhea associated with nervousness). (E3)
When I went to the hospital this time (the son was hospitalized during the research/ care), I did not feel bad and was able to stay with him longer. I also had more strength to stay there day and night. (E4)
The transformations generated by moments of transpersonal care affect the behavior of the person being cared for towards people around them. The sense of well-being fosters more peaceful behaviors and allows people to look at themselves, reconsider their priorities and needs, and valuing their self-care and recognizing their potential for change. In this sense, the responses to transpersonal care go beyond the individual boundaries of the people involved at the session of caring 27, it transcends the individual as its repercussions can go beyond the physical-material or the mental-emotional dimension. Transpersonal care crosses time and space, reaching people involved in the care process and transmitting positive sensations that radiate to other people or other experiences, just like the effects promoted by ocean waves 8,14,15.
When experiencing transpersonal care, the person being cared for starts a process guided by intentional inner change, based on a perspective that prevents focusing on the disease and directs energies towards the healing potential of care:
Whenever I was leaving this place, I left it in a mood that made me think that I wanted to practice this at home, because I would get home lighter and I wanted everyone around me to become lighter too. Isabela (the daughter with SCD) would say "Mom, you are different." Then I also tried to make her relax. (E2)
Now I think of taking better care of myself, of my health. Also physically. Concerning my well-being, I would not care to get dressed. Now I want to get dressed, to buy things for myself. I go to the doctor more often. Before, I only focused on taking care of my son and I would forget about me and him [her husband]. Now I take care of myself and I am attentive to my husband. (E1)
The moments of care, the experiences of silence, reflection and breathing under the supervision of a nurse resulted in a feeling of gratification for the people being cared for, who previously felt "disregarded" by health services.
I felt cared for. I had never been cared for before. I was never asked how I felt or how I was. I feel safe and I know that, despite the short time what, I have lived here with you I never lived it anywhere else. You treat me like a human being, and at first that made me a little suspicious. But now I see that this place, this treatment, is only for my wellness, with no hidden intentions, like when they treat you well because they want something in return. I feel very happy with this therapy. (E1)
Here, I feel that I am important. (E6)
The transpersonal care approach may help achieve personal growth by the people being cared for and by nursing professionals, as it translates into more significant interpersonal relationships that could lead to the development of helping/trusting and a feeling of freedom 6,28. The connection between body-mind-spirit through the well-being and fullness on the part of family members emerges as a result of transpersonal care 29, which, despite not having self-healing as its final end, is achieved by the involvement of the nurse's self with the caregiver's self in a reciprocal manner 6,8-14. This singular attention of the nurse towards the person being cared for motivates Jean Watson's current studies to value unitary care instead of institutional care, thus advancing towards the development of the Unitary Caring Science 6.
The results presented here value the process of being cared for and seek to acknowledge how the moments of care were experienced by examining how family members perceived this experience immediately after they lived it. Our findings add knowledge by presenting an intervention that allowed the displacement of the position of family members, most of the times questioned by nurses as passive subjects who receive instructions to provide care to their children. Therefore, this study presents an experience where family members are positioned as subjects to be cared for by nurses, in addition to revealing, through their voices, the well-being that nurses' care can provide in the moments and meetings in which this care occurs, through intentionally and theoretically grounded practices.
We emphasize that the care meetings took place in the space of a SCD reference center, a limiting aspect of this research that may lead to different evidence when studying this practice at other health care establishments. We also recommend the use of other research methods that could assess the results achieved after the nursing team care based on transpersonal care.
Conclusions
This study reveals that the assumptions of the Theory of Human Care can be considered throughout the process of prevention, diagnosis, treatment and rehabilitation of the state of illness. Our work shows that it is the nursing's role to deepen into the theoretical framework of nursing prescriptions grounded on the Theory of Human Care and the Unitary Care Science, so as to include them in the Systematization of Nursing Care.
The way of understanding and performing Reiki also fosters the autonomy of nursing. This ensures a kind of therapy that can be exercised longitudinally by the nursing professional and allows supporting the healing process of family members and the assessment of the nurse's professional activity during a given treatment.
The positive impact of transpersonal care mediated by Reiki signals the need to qualify nursing professionals and students on the applicability of the theory in question and the inclusion of integrative and complementary practices among nursing care practices. It is likely that our results may be achievable in several families of children with chronic illnesses. Transpersonal care can be helpful to mitigate the negative repercussions of the diagnosis, avoid family conflicts, prevent the disruption of social relationships, reduce the impact of the biographical disruption of family members, and develop specific and unique life projects.