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Cultural sensitivity in pediatric palliative care

Lisa Steehouwer, a third-year Sociology student, proudly hands over her research to Meggi Schuiling-Otten, director of the Dutch Centre of Expertise in Children's Palliative Care. Her thesis on cultural sensitivity in Dutch pediatric palliative care was assessed cum laude with a 9!

Healthcare professionals increasingly provide care to children - and their families - with a different cultural background than their own. The non-Western families often have different views and values with regard to health. This can lead to different experiences and expectations regarding the care provided. Lisa researched how you stay connected with each other. Because precisely in our differences lies the possibility of a professional and human caring relationship.

Culture sensitivity. What is that actually? Lisa likes to explain: “In my bachelor's research I distinguish between cultural sensitivity and culturally competent care. Cultural sensitivity is the attitude of the healthcare professional. You are aware of the influence of culture on healthcare. And so you are also aware of your own background and how you come across. When you talk about culturally competent care, you talk about your skills. For example, how well you can deal with the language and cultural differences.”

In her research, Lisa focuses entirely on the experience of healthcare professionals. She speaks to a total of ten healthcare professionals: three grief therapists, three spiritual carers, three pediatric nurses and a medical social worker. What do they think of the cultural competences of pediatric palliative care? How do they experience all those cultural barriers and what do they do to be culturally sensitive? Below are some lessons from the research.

What role do you work from?
First of all, Lisa notices that the way in which culture-sensitive work is done depends on the role of the healthcare professional. “The grief therapists and spiritual carers have a guiding role. They constantly try to connect themselves with the non-western families and are aware of cultural beliefs. They look beyond language alone and make more use of non-verbal communication. Pediatric nurses do this to a lesser extent. Without generalizing, I saw that they are often more direct. This is of course also because they have to provide more healthcare information to patients and also have to perform medical procedures. This difference is therefore easy to understand on the basis of those roles.”

Who is a doctor to say someone is dying?
In addition to looking at a situation from the perspective of your work and tasks, non-Western families often find it difficult to talk about the approaching end and to draw up end-of-life care plans. “In addition, they also believe that if you start talking about death, you bring death into your home. They often believe in a miracle. Who then is a doctor to say that one is dying? As a healthcare professional, it is very important to become aware of this,” explains Lisa.

A language of its own to talk about death
A number of pediatric nurses said that they have difficulty with Islamic parents who want to continue tube feeding, while that is no longer good for the child. “The trick then is to find a middle ground,” Lisa explains. “It is important to keep asking: what does this mean for the family? The healthcare professional can then explain from a medical perspective why it is important to reduce tube feeding. It is important that their thoughts or wishes are on the table.

Switch to non-verbal communication
Good communication between healthcare professionals is therefore essential. But how do you manage to find each other as healthcare professionals if parent and healthcare professional do not understand each other? “Interpreters are not the solution to the literal language barrier. As a result, nuances are lost and certain social connotations cannot be properly conveyed. Lisa indicates that you should pay much more attention to non-verbal communication. “Healthcare professionals indicate that through non-verbal communication, such as an open attitude or certain facial expressions, they can find a level of connection that they cannot achieve with language.”

It's not about knowledge, it's about your attitude
How can we put these lessons into practice? To start with, it would be nice if attention was paid to culturally sensitive working at school and during studies. “For example, this is much less discussed during the nursing course than a chaplain hears about it. And when it came along, it was about expanding knowledge about all those different cultures: what are the customs and views. It was much less about your own attitude: how can you behave differently? How can you create an open attitude? And that is precisely the message of my research: it is not about knowledge, but about your attitude. And that can be learned,” says Lisa.

It will continue to be a quest. You cannot be completely culturally sensitive. There will always be barriers and you will occasionally make wrong assumptions. “You are human and you have certain ideas in your head. But it is something that is being worked very hard on within the healthcare sector and for which there is a future. Perhaps it would be good to look for practical recommendations for my master's thesis”, says Lisa.

View the script below.