Preparing children and their families for heart surgery
- (© Anette Bjerke/FFHB)
Preparing a child for heart surgery can be a challenge for the whole family. As well as the child involved, parents and siblings also need assistance and information to help them cope. Concepts for a psychological preparation for surgery vary throughout Europe, depending on the aspects of the procedure emphasised and the personnel resources of the clinic.
Heart surgery is a stressful situation for families and needs special preparation
Open heart surgery is a stressful event for affected families. Parents usually do not know what to expect before, during and after their child’s surgical procedure. They are challenged by this emotional situation and often do not know how to help their child cope with the events. To deal with the difficulty of the circumstances, parents should receive as much information as possible at all times to reduce their amount of stress.
Leaving your child at the hospital for surgery
One of the most frightening situations for parents is the moment that they have to leave their child at the door of the surgery room. If their procedure is not an emergency, most children having open heart surgery are in a fairly stable physical state. Occasionally the child must be a prespecified minimum weight for optimum treatment, and parents might have worked hard to fulfil this requirement. Because their child appears to be healthy, relatives have difficulty understanding why the operation is necessary. Generally, parents are aware of the risks of the operation, so they are anxious to see their child after surgery in the intensive-care unit. Knowing that their child will be in a critical state with support from tubes and artificial respiration can leave parents with an overwhelming fear. These feelings should be carefully handled by the medical staff, who should speak as often as possible to the family to ensure that they feel educated about their child’s condition at all times.
The younger the child, the more difficult the preparation for surgery
Parents and medical staff should help to prepare children for surgery. Because of their developmental stage, younger children should be treated more carefully as they could have a difficult time coping with the surgical process.
Developmental attributes of preschool children
There are six development traits of preschool children that will have affect their preparation for the surgical procedure.
- Preschool children experience their world predominantly by their sensory perception: what they can see, hear, smell, taste and feel. To explain why their surgery is needed, parents or medical staff could use examples of how their symptoms will be positively affected after the surgery. For example, they might say: “After your recovery from surgery, you will be able to run with your friends without getting breathless or tired.”
- Preschool children have an egocentric cognition: they see themselves as the centre of the world and they are convinced that everybody knows how they feel. Therefore, we should ask children to explain their symptoms based on their experiences. For example: “Show and tell me, exactly where it hurts?” To make an appropriate judgment about their amount of pain, child-adapted scales should be used.
- Preschool children focus only on the obvious aspects of their situation. In the hospital they can be easily frightened by noisy machines, special clothes or equipment used by nurses and doctors, and parents and medical staff reassure the child. To avoid fearful situations, a child’s attention can easily be diverted to positive items such as soft toys, music or pictures.
- Preschool children do not consider other people’s intentions. Thus, they do not understand that a doctor who does a painful treatment only wants to help them. Before beginning a painful or uncomfortable procedure, the person from the medical team should explain their good intentions. Role play could be helpful in this situation. For example, the child could be instructed to explain to a doll it needs a shot and then act out giving the doll an injection.
- Preschool children cannot think backwards in time. Therefore, the processes that they will undergo should be explained in sequential order. Additionally, children do not have a clear idea of time. Parents should consider using examples to help improve their child’s understanding of time. For example, instead of telling a child that they will be in the hospital for 10 days, parents could explain the time in different phases (eg, “Only one more day in the hospital once Grandma comes to visit”).
- Preschool children do not understand the differences between cause and effect. For example, a child who has an older sibling that has undergone heart surgery might think that it is normal for all children to have heart surgery before entering school. Other children might interpret surgery as a punishment for bad behaviour. Parents should talk to their children so they do not link illness with poor behaviour or attitude.
Preparing school children for surgery is somewhat easier
At the age of 6–7 years a child’s thought process becomes more mature. As they get older, children become more reasonable. They are more able to reflect and deal with their feelings, and they begin to be more independent from their parents. When we consider the six developmental traits of preschool children again, these changes become clear.
- As children get older, their thoughts and spoken words become more important than their perceptions do. Increasingly, children are able to learn from verbal information.
- School-aged children become less self-centered and begin to appreciate that other people’s view of the world might differ from their own. School-aged children are willing to provide information about their own well-being.
- Children are able to focus on more than one thing. Their attention can be drawn towards positive aspects instead of focusing on their situation.
- Children begin to consider why things are happening, which makes giving reasons for the painful or uncomfortable procedures easier for the parents.
- Children begin to appreciate time. They understand the difference between the past, present and future. Therefore, parents can talk to the child more easily about the process of surgery and their necessary treatments.
- As a child gets older, they begin to understand the relationship between cause and effect. At this time, parents or medical staff, or both, should consider providing the child with more comprehensive explanations of heart disease.
Preparing a child for surgery is a necessity
- (© Anette Bjerke/FFHB)
Results from studies of developmental psychology show that children are often underestimated in their ability to deal with medical information. These studies show that children can cope with information about their physical state and can deal with stressful events. Additionally, young children of about 2–3 years can be prepared for surgery in a rudimentary way. Giving children, irrespective of their age, only vague or no information about their upcoming surgery seems unjustifiable. Children who are not educated about their surgery have an increased risk of being traumatised after the procedure. They could lose faith in their parents and health-care professionals.
Preparation for surgery in different countries—a summary
At the 2002 meeting of the psychosocial working group of the AEPC that was held in Bilthoven, Candini and colleagues summed up the research status for surgery-preparation programmes with the following points:
- The psychological preparation for surgery has increased in paediatric hospitals.
- Several studies have emphasised the importance of psychological interventions in cardiac surgery for children and adolescents in terms of eliciting adaptive emotional responses to distress.
- Several studies have reported different ways of preparing children and adolescents for surgery, with models varying in amount of time needed.
Examples of preparing for surgery in different countries
At the conclusion of the last meeting of the Association for Paediatric Cardiology (AEPC), the following projects were shared to show how different countries prepare for surgery.
Gent (Belgium): Home guidance (1)
Economic pressure and shortage of hospital beds does not allow much opportunity for inpatient preparation for surgery. Therefore, a nurse visited families for several months before the surgical procedure. Because of the ease of the home environment, staff were able to overcome educational, emotional and relationship difficulties. Later, this care was done by a full-time psychologist who visited children with other health problems.
Bologna (Italy): A Short programme that was established to cope with the distress of surgical intervention in adolescents (2)
The programme used some diagnostic and therapeutic tools to explore personality features and distress of adolescents. Staff had to find appropriate ways to cope with the issues discovered. Some psychological measurements made before and after the procedure led to the conclusion that the programme was efficient in helping adolescents cope. The programme consisted of:
- two sessions with parents, one before and one after surgical intervention; and
- ten sessions with adolescents, six before and four after surgical intervention.
Sofia (Bulgaria): preparation by psychologist and booklets (3)
The Sofia National Heart Hospital has a team of paediatric cardiologists, surgeons, psychologists, teachers and nurses. This group discovered that talking with the entire team of medical professionals overburdened parents at the time of surgery. Instead, the team held a meeting before surgery to provide parents with information. A psychologist provided support to the family and prepared the child for the operation. Because of the short time before surgery, the team of medical professionals created an educational book for parents. Plans are in place to create an additional book for children.
Birmingham (UK): Outpatient procedural anxiety programme (4)
In this programme, a psychologist and a therapist work closely together, using cognitive principles to reduce anxiety by de-sensitisation (and increasing the child’s perceived control). The duration of the programme varies depending on the child’s age, developmental stage, amount of time for preparation, experience, anxiety levels of child and parent, and the type of cardiac intervention that is required. Prepared children display less distress and more cooperation during cardiac procedures than do those who are unprepared. Parents and members of the medical team also seem to benefit from this method of intervention.
Linz (Austria): Psychological training for children with congenital heart diseases from 3 to 14 years (5)
Patients and families are prepared by role playing, cognitive learning programmes and coping strategies. The programme is individually adapted to the situation of every family. The results showed that patients’ anxiety was reduced significantly and the child was much more cooperative during treatment. Physicians, nurses, parents and patients all independently confirmed the results.
Mexico City (Mexico): A family-oriented model to reduce pre-operative anxiety for children with congenital heart diseases (6)
This model originated in a developing country. It aimed to enable their mainly underprivileged families to receive access to information. The model offered the following measures to reduce anxiety:
- guided hospital visit for patient on day of admission;
- parent’s workshop to explain surgical process;
- interview with the surgeon to clarify information that had been given
- support group and play therapy.
Germany: Brochures, booklets and training material
In Germany, a standard programme to prepare for the operation has been developed and is just being established. This consists of several different components, including brochures for parents and children and a CD-ROM for carers. The programme is taught to carers during training and is highly valued by all those concerned.
Booklet “Martins heart operation” (7); and a set of material to prepare preschool children with congenital heart diseases for surgery (8).
References
(1) Verhaaren R. (2000). Home guidance before and after surgery because of shortening of hospital stay: The ‘home medical history taking’ differs from the consultation information. Talk given at the Meeting of the working group on psychosocial problems of the AEPC from March 2 to 4 in Lund.
(2) Candini L, Bonvicini M, Gargiulo G, Picchio FM, Ricci Bitti PE. (2002). A new short time programme to cope with the distress of surgical intervention in adolescents. Talk given at the Meeting of the working group on psychosocial problems of the AEPC from February 28 to March 2 in Bilthoven.
(3) Markova, M. (2004). Teamwork in the clinic of paediatric cardiology. Talk given at the Meeting of the working group on psychosocial problems of the AEPC from March 4-6 in Vienna.
(4) Blyth J, Hill L. (2004). Treating procedural anxiety in paediatric cardiology. Talk given at the Meeting of the working group on psychosocial problems of the AEPC from March 4-6 in Vienna.
(5) Oberhuber R. (2002). Pre- and perioperative states of anxietyx with operations on childrens’ hearts. Talk given at the Meeting of the working group on psychosocial problems of the AEPC from February 28 to March 2 in Bilthoven.
(6) Almundena M. (2006). A family oriented model to reduce perioperative anxiety for children with CHD. Talk given at the Meeting of the working group on psychosocial problems of the Association for Paediatric Cardiology (AEPC) from March 8 to 10 in Belfast.
(7) Sticker E. (1993). Martin’s Herzoperation. (brochure to order via E-Mail e.sticker@web.de)
(8) Sticker EJ, Nock H, Oebels M. (2008). Preparing preschool children and their parents for heart surgery – a project of the German umbrella organization. Talk given at the Meeting of the working group on psychosocial problems of the AEPC from February 27 to 29 in Gent.
Comments on this article
Explícale que quizas este solita algunos minutos despues de la operación, pero que luego podran verse y hacer algo entretenido o que le llame la atención (comer, ir a casa a ver alguna pelicula que le guste etc.) Por nada le digas que duele y si te pregunta insistentemente trata de minimizar tus reacciones ansiosas ante ella.
Explícale lo que le van a hacer de forma aterrizada (no hables de cortes ni costuras ni sangre... dile por ejemplo: te van a arreglar la garganta para que ya no te duela más o te van a ayudar con esto a que puedas correr mejor, etc.. pero nunca le digas te va a abrir el pecho o te van a cortar tal parte o tal otra... eso es atemorizarla anticipadamente...)
Mucha suerte!!!
Gracias.
mil gracias...
En este momento, como seguramente están pasando los papis de este foro, nuestra cabeza esta llena de dudas, incertidumbre y miedo, no sabemos que esperar y nos invade en momentos el desconsuelo.
Yo no se porque a mi esposo y a mi nos paso esto con nuestro único hijo el cual amamos desde el primer momento que supimos que llegaría a la tierra, pero de lo que estoy segura es que Dios nos mando un ángel para entender un poco mas sobre la vida y valorarla al máximo.
Papitos, ustedes saben exactamente que es lo que pasa por mi corazón en este momento y lo que les puedo decir es que la FE mueve montañas y el AMOR es la energia mas fuerte que existe en el universo; estoy segura que el amor sana y protege, así que quiero llenar de amor mi hijo antes y después de que entre al quirofano.
No tengo poderes para saber que es lo que va a pasar, por eso valoro la portunidad de estar ahora con mi pequeño y disfrutarlo como nunca antes.
Les deseo mucho éxito en las cirugías de sus nenes, y le pido a Dios que nos engrandezca la Fe para que podamos tranquilamente entregar a nuestros pequeños en las manos de Dios y de esos ángeles de apoyo que son sus médicos y cirujanos.
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