Next of kin's experiences of healthcare encounters in the context of severe self-harm: “We know them best”

PURPOSE: Policies in Norway and similar countries emphasize the inclusion of next of kin in healthcare. However, research shows that many experience limited involvement and recognition. This study explores how next of kin to individuals with severe self-harm experience and make sense of healthcare encounters in a Norwegian context. METHODS: The study draws on in-depth interviews with 15 parents, partners, and siblings of individuals engaging in severe self-harm. Reflexive thematic analysis was employed, guided by a phenomenological sensibility. RESULTS: Three interconnected themes illuminated different aspects of participants' encounters with healthcare services. "In the hands of the system" captures experiences of navigating the healthcare system while concerned for a loved one's wellbeing. "Who do I become when excluded" highlights participants' experiences of their experiential knowledge being marginalized and how emotional involvement appeared to undermine their credibility. "The ones who stand by" reflects concerns about their own wellbeing and that of the wider family, alongside a desire for greater recognition and support. CONCLUSIONS: The results suggest that healthcare encounters involve not only support and participation but also recognition of next of kin's experiential knowledge and needs, which appears to shape their sense of legitimacy and ability to remain involved in care.