Case study: Germany
Booklet “Martin’s heart operation” (1993)
- Figure 1: Martin’s drawing of his heart defect: open Foramen ovale, VSD, muscle bundle in the right ventricle
In 1991, Martin (the author’s son) had heart surgery when he was 6 years old. The family prepared him as much as possible, which was not easy because of the scarcity of written information. This lack of information was one of the reasons why Martin’s family decided to document his hospital stay. They aimed to take notes so they could eventually put together a booklet for other parents and their children. During the pre-operative discussion with the surgeon, Martin showed a self-made drawing of his heart defects.
The surgeon was impressed by the sophisticated drawing. He promised Martin to take it into the surgery room as a “memory aid”, which contributed to Martin’s high confidence in the surgeon. (Martin did not attend the entire pre-operative discussion because it would not have been appropriate for him. In preparation, the family had arranged for Martin’s grandparents to take care of him).
In 1993, the booklet “Martin’s heart operation” was published. The booklet describes the ways in which Martin’s family prepared and managed the process for the entire family, including their two younger children. It contains photographs of the hospital stay and different text for children and parents. To date, the booklet has been distributed throughout German-speaking countries with positive feedback.
Letter from a mother who prepared her daughter, Nora, for surgery with the brochure “Martin’s heart operation”: Nora had her operation when she was 4 years old. The mother writes, “Thank you for your book ‘Martin’s heart operation’. Because of the book, our family went into the operation well prepared. We showed the book to Nora, read it to her and were able to explain the procedure through the pictures. She was very interested. Because of the book, we were not too frightened when we saw her for the first time in the intensive-care unit. 17 days after surgery when Nora had been discharged, she looked at the book again and said, ‘I don’t have a scar at my stomach like Martin does.’ In Nora’s case, her scars are different because her procedure was done on the left side. I am so appreciative that the booklet was created!”
Storybook, diary, brochure and CD (2007)
From 2005 to 2007, the German health-insurance company “BKK Bundesverband” financed a special project. The goal was to develop appropriate materials for parents who have to prepare their child for surgery. Additionally, very little material was available for children aged between four and six years. The organisation felt that creating a specific brochure would not be enough. In response, the Bundesverband Herzkranke Kinder developed a set of materials. The aim was to optimise and standardise preparation for heart surgery for preschool children, parents and psychosocial staff. This set of materials consists of four elements, which are described below.
Storybook “Anna’s heart operation”
In the storybook “Anna’s heart operation” the figurine “Mutz” helps Anna to cope with her heart surgery.
- Figure 2: Storybook Anna’s heart operation
A heart diary and activities to help the documentation of a child’s hospital stay
In this example, Mutz encourages children and their parents to document their stay at the hospital or clinic. The diary also contains activities for children
- a memory game;
- stickers to document the different medical examinations before surgery;
- suggestions and themed material to draw, cut and paste; and
- a certificate to award their completion of their hospital stay.
- Figure 3: Example page of Anna’s heart operation
- Figure 4: Heart Diary
The brochure “Well informed for surgery—a companion for parents of children with congenital heart diseases”
- Figure 5: Brochure “Well informed for surgery”
Contents:
1. Congenital heart defects
2. Preparation for parents
3. Daily routine in hospital
4. Preparation for the child
5. Admissions day
6. Cardiac catheter examination
7. Heart surgery
8. Intensive-care unit
9. Paediatric cardiology ward
10. Discharge
Training material for the nursing staff
The first training course was held in May 2007, with 20 participants. Future courses are planned and are expected to reach nurses and psychosocial workers all over Germany. Additionally, the programme will be presented at medical congresses. A CD for the nursing staff contained:
- Standardised presentation for parents information
- Assessment sheets for parents and medical staff
- Checklist for implementation
- Prototype of invitation letter for the parents
The continuous assessment by parents and children, as well as by the nursing and medical staff, showed positive results of these materials. As an example, some feedback that came from Switzerland stated, “With this information, parents and children can surely be supported with coping skills for surgery. Furthermore, the after-hospital booklet helps children to integrate their experiences. What a pity that this booklet did not exist when our daughter had her operation. This is fantastic!”
References
Sticker E. (1993). Martin’s Herzoperation. (brochure to order via E-Mail e.sticker@web.de)
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