© Springer-Verlag Italia 2015
Edward Callus and Emilia Quadri (eds.)Clinical Psychology and Congenital Heart Disease10.1007/978-88-470-5699-2_1010. Communication and Relational Aspects in Healthcare Professionals Caring for Pediatric and Adolescent Patients with Congenital Heart Disease and Their Families
(1)
Papa Giovanni XXIII Hospital – Bergamo, Piazza OMS 1, Bergamo, 24100, Italy
(2)
Department of Science Person of the Faculty of Education, University of Bergamo, Piazzale Sant’Agostino 2, Bergamo, 24100, Italy
The pentagram of interpersonal motivational systems can produce endless ‘relational tunes,’ through varied sequences and combinations of its ‘notes,’ just like musical notes, allowing an infinite range of compositions. Liotti
10.1 The Plurality of Meanings, Social Representations, and Symbolic Values Related to the Heart
The heart is an organ like no other. It has long been used as a symbol related to spirituality, emotions, and morality, inherent in the human being. In the past it was believed to be the place of the human mind, and, even today, the word heart continues to be used poetically to refer to the soul, and stylized heart shapes – not exactly corresponding to its real form – are widely used as symbols of love. “Love and gentle heart are one thing” (“Amore e cor gentil sono una cosa”), Dante wrote in Vita Nuova, 1293–1295.
Having a cardiac illness means not only to be affected in a vital organ but also in the vital center of energy itself. When we think about CPR, we usually figure it as an attempt to restore energy and to keep or bring the person back into the world of the living. In our clinical practice, a child with a pacemaker to stimulate the contraction of his/her heart said to his/her mother: “You know mum, I am like those robots that work with batteries: if I run out of energy I stop.”
Even in mithology, where the body with its functions prevails over mental contents (such as emotions, torment, psychic pain), the heart maintains a privileged role “[…] the heart is stirred inside the breast […]” [1]. Chest pain can thus assume a communicative dimension, that is, it narrates its inner world and becomes a means of symbolic communication of emotions.
Jean-Luc Nancy [2] writes: “from the moment I was told that I needed a transplant (of the heart), all signs seemed to falter, all references capsized (…) Just the physical sensation of an already existing void in the chest, a sort of apnea in which nothing, absolutely nothing, not even today, would be able to separate myself from the symbolic and the imaginary, nor to separate the continuous from the interrupted (…) it was one feeling: that I had fallen into the sea while still remaining on the bridge.”
Bringing your hands to your chest indicates the precordial constriction, and to the neck, it refers to the sense of suffocation. In the case of the heart, the metaphorical expressions used to symbolize the pain are manifold: the heart in the grip of anxiety, being shot in the heart, to have heartache, the broken heart or the heart that melts and also the heart beating fast in anger, a heavy and sad heart, etc.
10.2 Treatment of Chronic Disease Through Technical and Nontechnical Skills
This plurality of meanings is well known to those involved in treating people with heart disease, especially when they are chronic conditions. In such contexts, the complexity of meanings represented by the body is redesigned within a unique story, involving one specific person; a specific family background; a specific emotional, social, and economic context; and also a specific group of caring professionals. All these relationships are central to the experience of care. In child care, there is awareness that we are helping trace the footprint that will be distinctive in his/her history and that of his/her family, and this awareness leads us to maintain a constant attention to both the technical and the nontechnical skills [3].
The person and his/her background become central for the medical care. Hjortdahl M et al. [3] have been evaluating the survival, functional outcome, and the quality of life of an increasing population of patients undergoing cardiac surgery and have observed that the physical and psychological recovery of these patients is encouraging, leading to justify the large involvement of hospital resources intended to equip the caring team with the tools necessary to support the pathway to follow. Where there is no cure, but people can live monitoring their health, it is necessary to build an alliance that is sometimes complicated.
Anna’s family consists of her parents and a younger sister; she is 12 years old and has a congenital heart defect (hypoplastic left heart) for which she has undergone three palliative surgeries in the first 4 years of life and has always been informed about them. She has regular therapy and is monitored by the same center that diagnosed her condition. She is loved by the doctors and nurses whom she now meets every 3 months, though in the past these visits were more frequent. She is always accompanied by her father and mother, two polite people, who are very grateful for everything that is being done for their daughter. They live in another area, where they have medical references for daily minor issues, but they only trust this center because, they say: “Our daughter was saved here.” Recently, in view of the worsening of the clinical picture, the issue of heart transplant has been brought up. When interviewed by the team, the mother said she was worried about her daughter’s behavior as she selects foods fearing they might be a source of infection, washes her hands frequently, and is always worried about the wrong dosage of therapy. The cardiologist reminded her about periods in the past where it was easy to make Anna smile and make her cooperative. So by supporting the parents, they have in time become themselves part of an abnormal extended family.
It would be easier if medicine were an exact science never failing to heal patients. The medical team could then even afford the luxury of an intervention with no personal attachment to the patients. In reality, the team needs to establish a relationship with the patient, and especially when dealing with children, it is important to maintain the relationship channel open with the patients and their parents. There is growing evidence that families need help and support. Kendall et al. [4] interviewed 17 parents of children with heart problems at an early stage of non-hospitalization of their children. The drawn conclusion is that the parents need more help and support from health professionals to enable them to manage their children’s condition.
Areas of particular interest appear to be those relating to the information parents receive about the health condition, but also the communication between healthcare providers, the guidelines to determine the security levels in the various activities of daily life, and a greater support in dealing with schools. A similar conclusion was drawn again by Kendall et al. in a different section of the study [5], when they interview young heart patients to explore the views of young people with a variety of congenital heart defects, trying to understand what would help them to manage their life better and when and how they would need to be supported.
Here, too, the management of activities and communication about the disease were most often cited as areas that require continuous investment and improvement. This task is more complex when working in pediatrics, where the adult is often the only contact with health professionals. In a research Lee and Kim [6] analyzed the life experiences of ten Korean children and adolescents (14–22 years) with complex congenital heart disease. The analysis showed that the participants were initially unaware of the true nature of their conditions.
When children start attending school, the physical limitations and overprotectiveness of the parents usually help manifest the real disease condition. In general, healthcare providers tend to provide only parents with information about the disease, and not the patients, who therefore lack knowledge about their disease and often feel isolated and left out. Even Anna, confronted with the difficulty in handling daily life, showed the need to be helped through her obsessive rituals; she is not able to manage the anxiety caused by the worsening of the clinical condition. Her parents, perceiving the issue, ask for help and find the support of the medical team.
In line with what is suggested in the study by Kendall et al. [5], the importance of defining care that can ensure a relationship of continuity in the accompaniment of parents and their children was highlighted. Placing subjectivity as the central theme, the authors point out that the communication of the diagnosis cannot be reduced in a timely and standardized time, such as before the surgery, but it should be seen as a complex process characterized by a continuous monitoring over time and a remodeling of the information in the light of the needs of the patients and their parents.
This study shows the parents’ necessity to be able to talk and discuss about the health of their children and to express doubts and uncertainties.
10.3 Parental Involvement in the Treatment of Child’s Disease: Taking an Active Role in Emotional Experiences, the Consolidation of Sense of Identity, and Basic Trust
We must not underestimate the fact that for the parents the awareness of the diagnosis is painful, not only in relation to the actual condition of the child, but also in relation to the loss of their image of parents able to protect the life full of hopes they have generated. From clinical experience it emerges that parents often feel responsible (inheritance) for their children’s condition and frustrated for not being able to replace them in the experience of illness. In particular, a research by Bevilacqua et al. [7] on 38 couples with children affected by heart disease (from birth to the age of 3 months) has clearly shown how levels of stress and depression were found significantly higher in mothers than in fathers. Parents may therefore benefit from advice given throughout the pregnancy.
The dialogue between practitioners and parents in general appears to be the main guarantee of a communicative process in which the patient and the family become enabled to take an active role and can gradually develop useful skills. This is especially true when the disease is diagnosed in the perinatal phase.
Giovanni, a 5 months old baby, undergoes a surgical catheter placement in the course of treatment of his heart condition. After the surgery, he remains picky and unresponsive for a few days. This causes great concern in the parents until the care workers reassure them about the physiological time required, in light of the clinical event, for the recovery.
The natural process of self-awareness is built through the nurturing mother who provides a sense of what the child perceives, primarily at the body level. Numerous studies show that the child is endowed with competencies to relate with the environment in an active and interactive, mutually “shaping” way. Lichtenberg [8] declared that “during childhood each system contributes to the regulation of the self in interaction with people who take care of the child […]. The activity of each of the systems can be intensified so as to constitute the main aspect of the self” (ibid., p. 8).
There is no such thing as a child separated from his/her relations and the context, making it inevitable to consider being in relationship and the social dimension as constitutive of the person. The body keeps traces of the world it lives in [9]. In line with this, Liotti [10] reminds us that “the brain and memory pass into the body, they are in the body. The self and consciousness are inseparable from the body.” Winnicott [11] talked about handling and empathic holding.
All this is well established in terms of physiology, but where the body signals its fragility, things get complicated. Treatments must take into account the significance of the relationships, primarily with the parents. The importance of contact, its quality, its context, the ways, the intensity, etc. in pathological condition is therefore called into question.
For some time it has been shown [12–16] that the factors that allow parents to establish a public emotional attunement and an ability to respond sensitively and accurately in relation to the needs of proximity, contact, and protection of the child are in direct correlation with the mental representation of the child in the mother, as the mother projects to the child’s both perceptions and experiences.
As already mentioned, when the fetus and newborn shows a pathology, the confidence in their ability as parents is questioned, by the mother in particular, to generate a healthy child, as well as the confidence to be the first guarantor of its survival. This can interfere with the basic trust of the parent with respect to their ability to emotional containment [17], as well as the consolidation of what is the basis of the child’s sense of identity.
Related posts:
The Humanization of Healthcare Treatments and Critical Choices
Neuropsychological Aspects in Children and Adolescents with ConHD
Adjusting to Congenital Heart Disease in Adolescence: The Role of Patients’ Personality and Self
Psychocardiology and the Role of the Psychologist in Acquired and Congenital Heart Disease
End-of-Life Care and Treatment Preferences Among Adults with Congenital Heart Disease
Peer-to-Peer Support for Congenital Heart Disease in Europe: ECHDO and ECHG
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