From a presentation at the ICCPO/SIOP-conference 2006 in Geneva

My colleague and I are members of the psycho-social staff of the Pediatric Neuro-Oncology Program at Vienna Universitiy Children‘s Hospital.

Nina Gebetsberger is a clinical psychologist. She started working at the hospital as Clinic-Nanny when she was a psychology student. She will tell you about the experiences she had as a clinic nanny working with children with cerebral tumors. My name is Agathe Schwarzinger. I’m an art therapist and psychologist and it is my responsibility to co-ordinate the project!

How the project developed

As you all know, children who suffer from cancer have to spend a fairly long time in the hospital to receive their treatment. It is a very difficult time not only for the children, but has a significant impact on the whole family. The children must go through painful procedures and are isolated from every day activities. Games, books or watching television get boring in time. A change that raises their spirits is definitely welcome. In most cases, the parents spend most of the time with their children. Especially when the parents room-in with their children it is important for them to have the chance to take care of their personal needs, rest or run errands.

In order to support families and help them cope with the stress of hospitalization the Clinic Nanny project was started in 2003. It is a volunteer program and it was designed to provide individual care for children suffering from cerebral tumors and their siblings during their leisure time.

We think, that the project is one of a kind, because each Clinic Nanny focuses on just one special child – during the time of the therapy and if wanted, after the treatment has stopped. The individual care takes place during their stay at the hospital. Depending on the families needs it is also possible for the CN to make house visits. In this regard, it is very important to us that they meet on a regular and continuous basis, because that’s the only way to build up a trustful and close relationship.

What kind of service does a Clinic Nanny provide?

The Clinic Nanny offers support to both children and their parents.

  - She promotes the child’s interpersonal skills and helps to minimize the effects of isolation, which can arise during long periods of hospitalisation

  - She promotes age-appropriate social and emotional development

  - She provides support to the families

  - She helps alleviate stress and psychological strain and gives the relatives a chance to rest

  - She helps with organisational problems - like keeping up appointments.

It is important to mention that CN are not babysitters! They offer an individual care of the child and should build up a relationship!

The present situation:

In Vienna there are 14 Clinic Nannies working with families. All of them are volunteers. The liability insurance is covered by the Austrian Parents Cancer Association.

Steps in the process

First we try to identify eligible families. We want to send our Clinic Nannies to the families who need them most. During our multi-disciplinary staff meetings we evaluate the children and their families. 

Criteria for choosing families are as follows:

  - We take families who don’t live in Vienna into consideration since they usually don’t have relatives and friends nearby to help with the care.

  - The number and ages of the children in the family are important factors. Families with several children have often problems to meet the needs of the healthy siblings.

  - The employment situation is also an important fact to consider. Working parents need more support since they can not be with their child as often as other parents.

  - We take single parents into account because they are not able to take turns in caring for the child.

The emotional pressure on the family is also looked at, as well as, the kind of treatment, the medical prognosis and estimated length of therapy.

In one in to one- interviews we inform the parents about the project. If they want to take part in the program we try to select a Clinic Nanny that suits the child and is in the best interest of the family.

Meeting the families

I always accompany the perspective Clinic Nanny during the first visit to the child. Together we play with the child so that the child gets to know the Clinic Nanny. I am also there to answer organisational questions that may arise.

The time and frequency of the next meetings are set up between the families and the Clinic Nanny. Some families decide to meet on a regular basic. Others prefer a more flexible solution. - We try to find the best alternative for the family. The parents are present in the beginning, especially when the children are toddlers. This gives the child the chance to get used to the new person and the parents can gain confidence in the Clinic Nanny. When the child and the parents feel comfortable it is possible for the parents to leave. This is an individual decision left up to the family and varies from family to family.

Clinic Nannies

The following requirements are necessary to become a Clinic-Nanny:

  - Emphasis is placed on the fact, that a young person, who wants to become a Clinic Nanny should have experience and especially enjoy working with children.

  - Additionally, it is important, that the Clinic Nanny has knowledge in the field of psychology or education. Therefore most of our Clinic-Nannies are young people who study psychology, pedagogy or medicine.

  - Another important aspect is the fact a future Clinic Nanny has to be aware of is that the volunteer work will claim quite a lot of her free time and she must be willing to commit her/himself for at least a year.

The way to become a Clinic-Nanny

Applicants must send in a written curriculum vitae. They are then invited to a personal interview that ensures that he or she is qualified for the challenge.

Before they start to work they receive theoretical and practical training. During their theoretical training the CN are given psychological and medical manuals and handouts. The topics range from the impact of illness and hospital on children, how children view health and sickness, crisis intervention and more....These subjects are discussed with the psychosocial staff. In the practical training the CN gets to know the ward and the team. They are given guidelines regarding hygiene in health care settings. It is important for them to learn what to do when they visit children who are in isolation.

Once they start to work in the field they have a close exchange with the psycho-social team. The following points are very important to us.

  - We offer continuous supervision and educational training.

  - the CN takes part in the psychosocial staff meetings

  - if a CN has a question about her child or it’s situation, it is always possible to contact a member of the psychosocial team.

The Evaluation of the Clinic Nanny Project

Last year we evaluated the Clinic Nanny Project in order to see if the clients were satisfied and to receive suggestions for improvements from the families. A questionnaire was developed.

One of the first questions was:

  - “What were your expectations for the CN-Project?”

The answers were:

  - to get relief from every day chores in the hospital,

  - which means more relaxation for the child and their families in the hospital

  - there is someone who takes care of the sick child, so the parents are able to spend some time with their healthy children.

  - that the children are offered distraction from their illness.

We also asked, if those expectations were fulfilled. It appeared that the expectations were met or even exceeded.

Another question was: “What kind of benefits did you have because of your CN?”

  - it was possible to go shopping or take care of the household

  - more leisure time for the parents

  - more time for the siblings

  - distraction for the child

  - we were able to go for a walk

  - it makes the hospital stay easier

  - contact person for the parents

  - mental support for the parents

  - friendship

We also asked if there were any disadvantages. The parents negated.

We asked the parents: “What qualities should your CN have?”

  - She/he should have experience with children

  - knowledge of psychology

  - be young - a supplement to grandparents

We also wanted to know, what the parents would tell other concerned families.  They said:

  - the CN Project is a great possibility to support families in difficult situations

  - one should take the advantage of getting a CN. It helps you get some privacy and have time for relaxion

  - a CN supports and supplements a family in an ideal way

As you can tell, the feedback was very positive. The children enjoyed the fact that there was one special person, who took time for them. Even if the CN’s primary focus was on the child, we realised, that the CN also became a very important person for the parents as well in some cases friendships were established.

We also asked the CNs for their opinion.

Here is a personal summary:

Nina’s experience:

It was a one of a kind experience for me. On the one hand, I had the chance to see if I could work in the field of children with cancer, on the other hand, I developed an intimate relationship with a family. The little girl that I took care of had finished her treatment and was no longer hospitalised. Unfortunately, the side effects were devastating for her and her family. She suffered severe pain and was therefore unable to attend school. In addition she had to be fed via a feeding tube and had problems walking. Nobody could predicts if the situation would get any better and therefore, the whole family was emotionally stressed. The family no longer had the emotionally supporting environment of the hospital to help them. The Clinic Nanny project made it possible to offer the family support in their home. I visited the family once or twice a week and took part in their family life. We shared meals and I played games with the girl and her brother. I talked to the mother. She could take a bath, go shopping or just have time for herself while I was there. I visited the family for 2 years and a trustful relationship was built up. It was a good feeling to know that I was helping a family that really needed support. It wasn’t easy for me and it was time consuming. It took me an hour to get there and an hour to get home. And of course there was the emotional strain involved. I am, however, grateful that I had the chance to have this experience. Now, I am better able to understand what families go through when they are home. Last but not least, it was this experience that made me realize that I wanted to work in this field.

Summary:

The CN-Project has been going on for three years and we can say, that the CNies are an important part of the psycho-social team. The advantage is, as the evaluation showed, that the individual care is great support for the families. Unfortunately, we don’t have enough volunteers, to have a CN for every family. Therefore, we offer a daily entertainment program for our patients in hospital: We have a painting studio, music afternoons, play groups, movies and a lot more.

Basically the concept proved itself and was even transferred to another clinic in Vienna. Finally, we would like to give our special thanks to our Parent Initiative "Kinderkrebshilfe" for the financial support.

Agathe Schwarzinger (agathe.schwarzinger@meduniwien.ac.at)

Nina. Gebetsberger  (nina.gebetsberger@meduniwien.ac.at)

University Children’s Hospital, Vienna (Austria) and Parentinitiative Kinder-Krebs-Hilfe, Vienna   (elterninitiative@kinderkrebshilfe.at)