From Hidden Insights to Better Understanding: Physicians’ Perspectives on Caregivers’ Tacit Knowledge

Highlights: What are the main findings? People with profound intellectual and multiple disabilities (PIMD) express pain and discomfort through non-verbal signs and depend on caregivers’ readings and interpretations of these signs. Caregivers’ tacit knowledge (TK) refers to a crucial ability for recognizing these subtle signs and irregularities or for sensing when something is wrong, which are typically difficult to communicate with physicians. What are the implications of the main findings? Caregivers’ TK is essential for physicians, as it provides valuable diagnostic cues and helps start a joint diagnostic process. Medical care in co-production with caregivers depends on trust and partnership to overcome communication barriers and improve the physical and mental well-being of people with PIMD. Background: Diagnosing physical and mental health issues in individuals with profound intellectual and multiple disabilities (PIMD) often proves challenging, as these patients are unable to speak for themselves. Caregivers’ tacit knowledge (TK) refers to interpreting non-verbal signs, and is difficult to communicate with physicians. As limited research exists on physicians’ perspectives, we aimed to explore how intellectual disability physicians (ID physicians) perceive and value caregivers’ TK. Methods: Semi-structured interviews with ID physicians (n = 10), focusing on their perceptions and experiences with caregivers’ TK in medical care for people with PIMD, were analyzed thematically with an interpretive approach to identify key patterns and insights. Results: ID physicians perceived caregivers’ TK as a critical ability to pick up subtle signs and irregularities or as a deep sensing something is wrong, with the latter being more difficult to communicate. They understood the importance of TK for diagnostic cues and of collaborative relationships to explicate TK. Conclusions: We describe how integrating caregivers’ TK with medical knowledge relies on trust and partnership. Moreover, we discuss how to overcome communication barriers and to improve medical care in co-production with caregivers in order to enhance the physical and mental well-being of people with PIMD.