Online Tool on Involuntary Care: The Client Perspective Weighing Framework
The Academic Collaborative Center (ACC) for Living with an Intellectual Disability (Tranzo, Tilburg University), together with the University Network for Elderly Care, developed a practical online tool: The Client Perspective Weighing Framework. This tool helps healthcare professionals determine whether the care received by people with intellectual disabilities, dementia, or other brain disorders, in a given situation, is involuntary. Additionally, it raises awareness of the client perspective among healthcare professionals.
Questions like “How can you incorporate this perspective into the care you provide?”, “What does the client themselves want?”, “What is the reason behind certain behavior?” and “How can you enhance the client’s autonomy?” are included in the Client Perspective Weighing Framework (only available in Dutch). The tool allows healthcare professionals to make a joint decision with their colleagues. The tool does not dictate what care a professional must provide. That decision remains with the healthcare professional, in consultation with clients and their nearest.
Development of the Tool
The distressing situation of Brandon, a boy with an intellectual disability who was frequently and for extended periods restrained with a harness to the wall of his room, led to the establishment of the Think Tank for Complex Care in 2011. Professor Petri Embregts from the ACC for Living with an Intellectual Disability explains: “The Think Tank was tasked with analyzing situations like Brandon's and making recommendations on how to provide care in a way that avoids or at least quickly reduces the need for restrictions on freedom. This aligns with the Care and Coercion Act, which aims to avoid involuntary care as much as possible, unless it is necessary to prevent serious harm. The online tool, The Client Perspective Weighing Framework, was eventually developed through research in collaboration with the Amsterdam UMC.”
Research on Client Perspective
Embregts: “The research, commissioned by the Ministry of Health, Welfare, and Sport, showed that involuntary care is common among people with intellectual disabilities. Measures that directly impact the body were perceived as the most involuntary. Indirect measures, such as motion sensors in the bedroom, were seen as less involuntary. The various sub-studies* provided insight into how healthcare professionals can interpret client behavior to better understand their experience of care. Clients may exhibit a wide range of behaviors indicating the experience of involuntary care, from aggressive behavior to more introverted actions such as withdrawal or apathy.”
From Research to Practice
Based on the research results, an online tool (website) on involuntary care was developed, in close collaboration with the ACC’s care partners. Embregts: “Two affiliated healthcare organizations tested a prototype of The Client Perspective Weighing Framework, which was adjusted based on their experiences. Initially, caregivers found the tool too wordy, so it now includes more visual information in the form of animation videos and less text. Currently, research is being conducted in collaboration with the Academic Collaborative Center Viveon (VU) on the implementation of the tool and its impact.”
Application in healthcare
Embregts: “The tool is designed for care professionals working with people with intellectual disabilities, but also for those in elderly care, specifically when working with people with dementia. They can use the tool to make an informed decision regarding the provision of (involuntary) care. For example, do you let a client choose what they want to eat or not, or does the client know that medication is in their drink? Do you allow the client to decide what they want to do during recreational time? Or in terms of supervision: does the client know that there is a camera or sensor in their bedroom? The tool is explicitly not a checklist but a prompt for care professionals to consider the client’s perspective through questions. In this way, they can make a conscious decision about the care and support provided.”
Positive experiences
Embregts: “The experiences with The Client Perspective Weighing Framework have been positive. Healthcare professionals report being more aware of and empathetic towards the client perspective. For people with intellectual disabilities who cannot verbally express themselves, this tool can ensure that they gain more autonomy through their behavior—and its interpretation by healthcare professionals. Additionally, care partners of the academic collaborative center see various possibilities for using the tool. For instance, during training sessions on involuntary care, both for new and current employees, but also during case discussions and as a tool for conversations with the network.”
Currently, Embregts is involved in research on the effectiveness of three methods—including The Client Perspective Weighing Framework—to reduce involuntary care and is investigating which factors contribute to the success or failure of their implementation.
* The results of the literature study, the concept mapping study, and the vignette study have been published in the report ‘Belevingsonderzoek Dwang in de Zorg’. Scientific articles have also been published on the vignette study and the concept mapping study: de Boer et al., 2019 and Embregts et al., 2019.