Learning from experiences of ABI’s patients’ informal caregivers in SDM about effective communication and collaboration

Thesis – Master Health Care Management

The healthcare system in the Netherlands is under great pressure to remain accessible and affordable (Johansen, Loorback & Stroopendaal, 2018). The Dutch government is acting on these challenges with a policy framework that emphasizes the imperative for a transition towards appropriate care (passende zorg) (Zorginstituut Nederland, 2022). The appropriate care framework places significant emphasis on self-management of the patient, with shared decision making (SDM) as one of the principles (Zorginstituut Nederland, 2022, p. 7). SDM is an approach in which patients and professionals make a decision together, where both share all their knowledge (Elwyn et al., 2012). Equal collaboration with open communication is important. However, there are cases where the patient may struggle to communicate their wishes, norms and values, which is needed in decision-making (Meraj, Sivakumar & Muehlschlegel, 2023).

This research focuses on what can be learned from informal caregivers’ experiences in the SDM processes about effective communication and collaboration with professionals. Based on the experiences of informal caregivers, a guidance for professionals can be developed on how to incorporate effective communication and collaboration with this group, in the SDM process. This will clarify and improve the Dutch policy discourse, and thereby contribute to an effective, efficient and quality-driven care based on the needs of the patient (Zorginstituut Nederland, 2022). Additionally, the scientific relevance lies in extending the current knowledge of SDM, based on the experiences of informal caregivers of patients with ABI.

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