Greetje Zaal (57) is a social worker at the AMC hospital. Since 2006, she has been providing parent guidance for sickle cell disease and hemophilia.

What can you tell about parents of children with sickle cell disease?

It’s a parent group that’s often very isolated. It usually concerns single mothers (60%). Some fathers can’t accept it when their child becomes ill. They simply deny that the child is ill, so the mothers have to deal with it all by themselves. And the disease is also surrounded by taboos.

What kind of taboos?

People think it’s contagious. And because it’s a hereditary disease, many people feel guilty; their child has become ill because of them. Fathers often think that it only passes through the mother's side and that’s definitely not the case!
This sense of guilt plays a pivotal role in some cultures; a sick child is often considered a punishment from the Gods for bad behaviour.

What can you do for them?

Social work is a very broad concept. I arrange basic things for parents of children with sickle cell disease, such as housing and financial matters. I try to arrange better housing for parents who live in a bedsit with a sick child. I also provide information, mediation, parenting support and help with the processing of feelings of mourning because their child has sickle cell disease.
Some people have major problems, which is when I have to really break through a downward spiral. When they’ve got no money and even no food.
Recently, I dealt with a mother of six, two of whom had sickle cell disease. She was up to her neck in rental arrears because her husband, the breadwinner, had walked out. She was living in a house that was way too expensive and left completely ruined. That’s when I arranged support from a wide variety of areas. Together, we went to the Benefits Office to reinstate an income. I also sourced another house for her and she has been given domestic assistance. And that worked miracles! She is currently studying and the family is doing very well.

Do you often visit people at home?

Sometimes I do. If you see first-hand how bad a family is doing, you can also better describe the problems of the family in letters that have to be sent to the various authorities.
My philosophy is that if the basic things aren’t properly organised, being a good parent becomes almost impossible. I do also try and be involved in the parental side of things. It’s quite a challenge to make your way through that, even more so when dealing with African people compared to, say, people from Surinam.

Is it difficult to communicate?

Most parents do speak another language in addition to their native tongue. I myself speak Dutch, English and French and that usually suffices. I do always encourage people to take Dutch classes. Unfortunately, people are going to have to pay for it themselves in the future. I send parents in Amsterdam south-east to Doctors of the World, where they receive free classes.
Two years ago, I started organising monthly meetings for parents. Here, they can meet up, exchange experiences and obtain information. And hopefully, I can also free parents from their isolation. Each time, we discuss a different theme. The turnout varies. Some parents are reluctant or have to work.

How do you ensure contact with the parents remains positive?

As a social worker, I always try to link up with the experience and feelings of the parents.
I once knew a devoted couple with twins and they, the parents, were struggling to keep an overview. One of the children had sickle cell disease and the other one was a poor eater. That was a real problem for the parents. She was given four sandwiches to school every day and one was always left. My advice would be; why not prepare three and she will feel much better. With that, the grandmother called every day to make sure the child had eaten well and this made the mother extremely anxious. I talked to the grandmother and it appeared that she thought the girl had cancer and would die. After explaining that she had sickle cell disease and that this could be controlled with medication, the problem was solved.

What is your experience with other cultures?

I’ve learned a lot from people of other cultures. The way I deal with them is about trust and respect. Support is very important. Most people hate patronising. As a white care provider, that’s something to look out for. I try not to be patronising, I’m not telling people what to do and or what not to do. I do try to give them lots of support. And if the trust is there, there may well be some room for advice. I start off with support followed by some questions and if the situation allows for it, I start pushing a bit. ‘It’s a good thing that you do it that way, but did you know you can also do it like this...’ I may well have a certain way in mind to achieve the goal, but it doesn’t always work that way. I try and adjust to the pace of people. I regard myself as a petrol station for support, where people can visit and fill up, if necessary. This succeeds by always keeping your promises and being very clear.
I’m not telling other people how to live their lives. I want people to emancipate and make sure that they start doing things by themselves.

Is there anything you want to add?

I’m currently reading a book about migration; what’s it like for black women to migrate. They always have to be strong, they must survive. Many white women can choose; a nice job, a husband, children... Many black women can’t choose; they have to accept life as it is. This is often also the case in the lower environments. I’m often impressed with how they handle this.
I’ve also learned that what’s important for the average Dutch person is not important to everyone.