CONTINUING OUR NEW SERIES: PALLIATIVE CARE AND INTELLECTUAL DISABILITIES…
Today’s guest writers are Hanna Noorlandt (Erasmus MC), Freek Felet (Prisma Foundation), Ida Korfage (Erasmus MC) and Michael Echteld (Prisma Foundation and Avans University of Applied Sciences) from The Netherlands. Here, they talk about a new tool that they are developing, In-Dialogue, that aims to support the conversation of people with ID, their relatives and their support staff about the care they would like to receive in the last phase of life.
Palliative care is becoming increasingly important for people with intellectual disabilities (ID) due to increasing longevity of this population. Shared decision-making that supports the alignment of care to patients’ needs, values and wishes, is essential in the palliative phase.
People with ID have a reduced ability to understand new and complex information and they experience limitations with regard to social and practical skills. Support staff of people with ID indicate that they need support in conversations about wishes and preferences with people with ID in the palliative phase. They find it difficult to involve people with ID in shared decision-making and people with ID cannot always express in words what is important to them. To provide such support we developed the conversation aid, In-Dialogue, which has been piloted in care organisations for people with an ID in The Netherlands: Prisma Foundation, Cello, Ipse de Bruggen and Amarant.
Promising results have emerged from the first conversations. For example, it became clear that a resident was very burdened by the loss of a girlfriend, new hobbies were discovered, and beautiful conversations addressed the loss of loved ones, funerals and serious illness.
Design and features of In-Dialogue
For the design of In-Dialogue we organised (work) sessions with people with ID, support staff, care experts, experts in the field of education on care for people with ID, and a designer. Together with educational experts, we developed an In-Dialogue training for support staff, comprising e-learning and group training modules with information on palliative care, shared decision-making, and In-Dialogue. Forty-two support staff from three different healthcare facilities attended the training.
The final In-Dialogue box consists of a pad that resembles a board game, and 13 conversation cards, 50 supporting illustrations, a workbook (digital and physical) and a manual for the support staff or the relative of a person with ID. With these materials, the support staff start the conversation with the person with ID and, if possible, their relatives. If the person with an ID is not able, or not fully able, to participate in an In-Dialogue conversation, the conversation will be conducted with relatives. The pad is shaped like a flower with four leaves. Each leaf represents the following themes in the shared decision-making process: ”Who are you”, “Illness/End-of-Life”, “Making Choices” and “Application”. The themes are discussed in a continuous process throughout the palliative phase.
During the process,values, wishes and preferred activities of the person with ID may become clear or may change. Images or objects related to these wishes, such as a CD with favourite music, can be stored in the In-Dialogue box. The box can be illustrated by the person with ID to underline that the box really belongs to them, adding a personal touch. Support staff record the conversations in the (digital) workbook, which is part of the electronic client records. It is important that this process is conducted by support staff who know the person with ID and that there is mutual trust.
Application of In-Dialogue in the time of SARS-CoV-2
In the current era, it is important that issues concerning illness and the end of life can be discussed, also with people with ID. Conversations of support staff and people with ID show that the tool In-Dialogue can be used to discuss the corona pandemic and the consequences of corona measures. In-Dialogue can, with some adjustments, also be used during telephone conversations. If you have questions about In-Dialogue, please email Hanna Noorlandt.
This research project is funded by the Netherlands Organization for Health, Research and Development (ZonMw)
Links and resources
- Contact Hanna Noorlandt by email.
- The European Association for Palliative Care (EAPC) Reference Group on Intellectual Disability.
- Please complete the PEPIC19 survey: An international survey of end-of-life and palliative care of people with intellectual disabilities.
Read more posts in the ‘Palliative Care and Intellectual Disabilities’ series here (the last two posts include links to related publications and a multi-media open access tool). If you’d like to contribute to this series, please email the editor.
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I heard your presetation at IASSIDD and was impressed with the work, though I wondered how well it could be used outside the very specific health and care settings in the Netherlands. Is the tool available in an English Language version yet? Where can it be obtained? All the very best Jane Bernal sjbernal @btinternet.com