THE DIARY: building a bridge between parental care and professional care. 

Paper presented at the Nurses Meeting of the SIOP Istanbul 1997
 
Marianne Naafs-Wilstra, secretary Vereniging 'Ouders, Kinderen en Kanker' (Dutch childhood cancer parent organisation)
Corry van den Hoed-Heerschop, president of the Dutch Pediatric Oncology Nurses Forum
 
Pediatric oncology in the Netherlands
In the Netherlands each year approximately 400 children in the age of 0-18 are diagnosed with cancer, 45% haematolo­gical malignan­cies, 55% solid tu­mours. Survival rates are over 70%. According to advice of the Dutch Health Council (1993) children with can­cer are treated by speciali­zed multidisciplinary teams in paediat­ric cancer units. There are seven PCU's: in the Univer­sity Hospi­tals of Gronin­gen, Nijme­gen, Utrecht, Amsterdam (two), Leiden and Rotter­dam. From each of these hospitals two pediatric oncology nurses represent their PCU in the natio­nal Pediat­ric Oncology Nurses Forum.
 
Shift to out-patient treatment
The last years we see a shift in the care of children with cancer. Ear­lier, children with cancer stayed in the hospital for the whole period of treatment, now the child with cancer goes home as soon as possi­ble and is treated on an out-patient basis. That means that the parents have the daily care for their child. They have to give the medicati­on, nutriti­on, take care of the central venous system, deal with questi­ons about going to school, going to friends and so on. They also have to cope with the feelings of the siblings and with their own feelings and of their partner.

New is also that, when the child is in remission, part of the treatment takes place in the local hospi­tal near the child's home - under suprevi­sion of the PCU. This means that parents and child have to deal with many more professionals of three different institutions: the University Hospital, the local hospital and Primary Health care.

Modern childhood cancer treatment requires a constant balanced coop­eration between professio­nals and parents. The main basis for coopera­tion is efficient communication. Because keeping day-to-day contact is hardly possible, the Dutch Pediatric Oncology Murses Forum reali­sed that a new kind of communicati­on and support had to be develo­ped. They decided to contact the Dutch parent organi­sation `Parents, Children and Cancer' that also was thinking about ways to improve the communi­cation between professionals and parents.
 
The Dutch parent organisation
As the title of this paper says the DIARY wants to build a bridge between parental care and professional care.
From the very start in 1987 when the Dutch parent organisation was founded, bridging the gap between professi­onals and parents has been one of our goals. Our logo is not only the symbol of the unique bond of the family - parents and children hand in hand - but the logo also wants to express that that the treatment and care of a child with cancer is a matter of coopera­tion between professionals and parents. There may be many experts in the team of professionals, but the parents are the experts in the field of their child. They know their child the best, they know how to comfort their child when it is anxious or in pain, they know how to prepare it to medical procedures, they are their child's advocate. Parents and profes­sionals need each other during the process of treat­ment, each provi­ding his or her own experti­se. This is what our logo symbolizes.
In that tradition of dialogue our parent organisation has always been a supporter of coopera­tion on a national level with professional organi­sati­ons. That is the reason that the parent organisation worked so well together with the members of the Dutch Paediatric Oncology Nurses Forum to realise the DIARY.
 
Development of the DIARY
As in the treatment team also in the group that worked on the DIARY project each member, parent or nurse, had her or his own expertise and vision, and we gratefully exploi­ted that fact. On the other hand it was sometimes not easy to fine-tune the contribu­ti­ons from seven different hospitals who for instance all have their own percep­tion of hygienic precautions. But gradually the en­thousiasm of the team increased and I may say we are all very proud of the final result. The DIARY has been compiled and written by nurses and parents, but of course paediatric oncologists and a hospital farma­cist were consulted to check the text and the medical information. The Comprehen­sive Cancer Centre Steden­driehoek Twente supported the project finan­cially.
 
Goals of the DIARY
The DIARY has a triple objective:
first:      - to optimize the interaction between professionals and parents
second: - to improve the coping strategies of parents
and third: - to optimize interdisciplinary communication: within the hospi­tal and between second-line medical care and primary health care
On the inside of the cover of the Diary is a leaf for the appointment card and the punch card that is used in all hospitals in our country.
The DIARY is a loose-leaf system so that all relevant information can be added during the treatment period.
 
Contents of the DIARY
Section 1 is a "general part" for personal details and for names and phonenum­bers of the departement, doctors, nurses, farmacist etc.
 
Section 2 is a part "for parents only". There you find tips from parents to parents in the form of information about going home, your child and the school, a tip ten and an alphabet.
This section also contains room for a diary. Keeping a diary can help parents to cope with the stressful situation.
Finally this section gives information about the parent organisation and its activities.
 
Examples of the tips in the tip ten, tips given by "veteran" parents to parents who are newly confronted with a child with cancer.
• Make sure all your questions are being answered! You are not troublesome, you are standing up for your child. And you can only be your child's advocate when you are well informed.
• Try to make time for yourself too, how hard it may be. Have a cup of coffee with a friend, go to the movie, take a walk, play soccer, go jogging.
 
Examples from the alphabet, again parent to parent information:
• D is of Death:  Unfortunately not all children can be cured. Now and then every parent feels the fear of loosing his child. Talking about your fears helps.
• H is of Help:  Accept the help that is offered. It is so good when you don't have to worry about the laundry or the shopping.
• S is of Siblings:  Your other children need you too. But sometimes you may not have the time to pay attention to them. In any case let them feel you love them.
 
Section 3 gives information about the treatment.
It contains a leaf for the treatment protocol.
It gives general information about drugs and drug administrati­on. Every time the drugs change, this has to be documented by the doctor or the nurse. There are also instruc­tions for daily care, and for the preventi­on of infections and how to deal in the case of infections, and informati­on about the side effects of the treatment. And finally information about the central venous system.
 
Section 4 provides room for cards with information about specific drugs and radiotherapy. There are 38 different cards - chemotherapeutic agents, supportive drugs and radiotherapy - [of course parents only get the cards with the drugs their child receives]. The card gives the other names of the drug, tells what kind of drug it is, how it looks like and how it is administered. It gives information about the short term side effects and about the long term side effects. There are special instruc­tions, like when to call a doctor, and finally special details.
 
Section 5 is the communication part.
There are pages for interdisciplinary communication (within and between hospi­tals, and second line medical and primary heath care).
And this section contains room for a log. Parents can write down the reactions of their child to the treatment, and this way they eventually may discern a pattern. This way they are better able to understand when somet­hing abnormal happens so that they can contact the doctor in time.
They can also write down important questions so that they don't forget to ask the doctor or nurse once they are in the hospital.
 
Section 6 provides room for information of the own hospital.
Most of the time it will be information about the routine on the ward etc. But sometimes hospitals do have their own instructions, for instance if swimming is allowed or not. The very fact that the Diary is the result of a unique cooperation between the national Pediatric Oncology Nurses Forum and the national parent organi­sation gives us good hope that we together - parents and nurses - will be able to make a change and to achieve national consensus in those areas too. 
 
The use of the DIARY
The Diary is given (free of charge) to all parents of a child with cancer within one a week after diagno­sis. This happens in the academic hospital where the child is diagnosed. With every visit to the academic or local hospital, the family doctor or the home nurse parents bring the DIARY so that the information can be updated.  This way parents are actively involved in the choices that are to be made. Also it is no longer neces­sary to tell over and over again the same story to another professional: he or she only has to read the informati­on in the DIARY.
 
The use of the DIARY has been implemented in the seven pediatric cancer units in the Netherlands since May this year and the first reactions are merely positive, from parents and professionals. Perhaps the only minus is that some pages are not enough, which means that they are filled in, and that is waht we wanted.
In fact even many profes­sio­nals working in other areas of health care have asked permission to "steal" the idea. The pediatric oncology depart­ment of the University Hospital in Leuven, Belgium, uses the DIARY too and if the experiment here is succes­sful they will adapt the concept.  

Evaluation study
By the end of this year we will start an evaluation study of the use of the DIARY. If necessary we will re-adjust the contents.
 
Conclusion
It is obvious that the DIARY demands an active attitude of all people involved in the treatment and care of a child with cancer, professionals as well as parents, in and outside the hospital. Only then, with the coopera­tion of everyone, the DIARY will achieve its goal: to build a bridge between parental and professional care.
 
For information:
Marianne C. Naafs-Wilstra,
Achterdijk 85, 3985 LA Werkhoven, Nederland
tel/fax: + 31 343 551969, e-mail: mcnaafs@worldaccess.nl