People with (very) severe intellectual and multiple disabilities ((Z)EVMB) cannot tell how they are doing. Within the care for this target group, so-called 'tacit knowledge' seems to play an important role. In order to gain insight into the nature, structure and transfer of this emotional and intuitive knowledge, a scientific research project was started.

People with (Z)EVMB cannot or can only express themselves very poorly in words. Thanks to 'tacit knowledge', parents, caregivers and healthcare professionals often know exactly how they feel and what their needs are. This form of 'knowledge' contributes to better care and support for this target group. At the same time, this knowledge is vulnerable. Among other things, due to staff changes in healthcare and the possibility that people with (Z)EVMB outlive their parents. In the research project 'Tacit knowledge: a qualitative study into the use and transferability of implicit knowledge in care and support for people with (Z)EVMB' of the Amsterdam UMC, the role of 'tacit knowledge' in the care for people with (Z)EVMB has been scientifically described and investigated.

Knowledge that is not in books

Ilse Zaal-Schuller, VG physician (Amsterdam UMC and Prinsenstichting Purmerend) and palliative care specialist, was one of the researchers of the research project. Ilse: “The project originated from an idea of my colleague, and VG physician, Sylvia Huisman and focused on further concretizing 'tacit knowledge': a form of knowledge that is difficult to put into words. A feeling, intuition or what the doctor calls a 'gut feeling'. It is knowledge that is not in books, something that makes it difficult to transfer.” According to Ilse, everyone has 'tacit knowledge'. It ensures that you can perform normal routines without thinking and detect the smallest deviations, for example in traffic. This ensures that you can respond competently. “Within the care for people with (Z)EVMB, 'tacit knowledge' is the experiential knowledge that parents and caregivers bring with them. They can read a child and observe even the smallest changes in behavior. They are able to interpret this and respond to it. For example, they can sense when a child becomes ill.”

Ilse Zaal-Schuller, physician VG (Amsterdam UMC and Prinsenstichting Purmerend) and palliative care specialist.

'Tacit knowledge' cannot be measured in numbers

Ilse: “The main goal of the research was to visualize the importance of 'tacit knowledge' in the care of people with (Z)EVMB. Thanks to this project, we now have a better picture of how parents build up 'tacit knowledge', but also how they transfer this to care providers. What do they share the most about? What happens with this knowledge? By nature, doctors like to make things measurable. But 'tacit knowledge' cannot be measured in numbers. Nevertheless, it is important that a doctor includes this form of knowledge in decisions. If something is not directly measurable, this does not mean that nothing is wrong. Parents have seen some signals so often and experienced so much, they know their child best.”

“We especially wanted to highlight the importance of 'tacit knowledge' in the care of people with (Z)EVMB”

A deep sense of knowing

How do parents and caregivers build up this 'tacit knowledge'? "That mainly has to do with getting to know their child well," says Ilse. "They see their child grow up and learn to recognize signals." But sometimes it is also a matter of 'trial & error', she emphasizes. With new signals, parents will have to try out what works. Is the child in pain or hungry? By trying, they know how to act next time. "Ultimately, it is also about gaining trust," says Ilse. "When your suspicions are confirmed more often, you eventually dare to listen to the little voice in your head. It is a deep sense of knowing, a kind of sixth sense. When parents dare to trust that, they also dare to approach a care provider with that intuitive feeling."

'Healthcare providers also have 'tacit knowledge'

Ilse is convinced that healthcare providers also have 'tacit knowledge'. However, there are a number of preconditions for building this. "Personal involvement and empathy are essential for building 'tacit knowledge'. Working in permanent teams can be helpful in building 'tacit knowledge', because healthcare providers get to know clients well. In addition, a working environment must be safe enough to transfer intuitive knowledge. Only then do healthcare providers dare to discuss their 'tacit knowledge'." Ilse does have a caveat when working with permanent teams: "When teams remain unchanged for years, the acquired 'tacit knowledge' is often no longer properly tested. This is while people, including clients with (Z)EVMB, change. This can cause signals to be missed or misinterpreted. Some innovation within a team can therefore be very good."

Improving portability

Transferring 'tacit knowledge' is a challenge. The research therefore investigated what is needed for a good transfer. Ilse: “The general conclusion is that 'tacit knowledge' is very important in the care of people with (Z)EVMB. We have actually known this for a long time, but thanks to this research project there is now more scientific evidence for it. People with (Z)EVMB cannot say what is wrong. As a result, it still happens too often that care providers find out too late, or sometimes not at all, what people with (Z)EVMB actually want to say.” In order to visualize the complexity of signal interpretation, parents in the project were asked to film conflicting signals from their child. Signals that they thought someone else could misinterpret, such as laughing as an expression of pain. “It is important that doctors actively ask parents and caregivers which signals they see that make them think something is wrong. These are often very subtle signals that someone who does not know the person with (Z)EVMB can easily miss.”

“When knowledge comes together, the best policy is created”

Collaboration leads to the best policy

The conclusion of the research is that good cooperation between parents, caregivers and care providers is essential. Ilse: “When this knowledge comes together, the best policy is created. VG doctors have 'tacit knowledge' when it comes to the target group, parents and caregivers on an individual level. Parents and caregivers are the eyes and ears for a doctor. Their knowledge in combination with the medical knowledge of the doctor often results in the best policy.” It happens, says Ilse, that what parents suspect cannot be proven. However, this does not mean that parents are wrong, she emphasizes. “Sometimes the concern of parents is enough to take action anyway. Always take parents seriously and also express your confidence in them. This confidence helps in the cooperation and contributes to the exchange of 'tacit knowledge'. This ultimately benefits the care for the client.”