"As if we didn't exist" - A participatory reflexive thematic analysis on next of kins' experiences of their interactions with the psychiatric health care system in Germany.

BACKGROUND: Involving next of kin in psychiatric care has been shown to significantly enhance the recovery process of the person in treatment as well as the wellbeing of the next of kin and aligns with clinical guidelines. However, despite broad recommendations, their participation remains inconsistent, and many next of kin report dissatisfaction with their involvement. Research predominantly focuses on psychiatric staff perspectives, leaving a gap in understanding how next of kin perceive their interactions with psychiatric professionals and institutions. METHODS: This study is part of the participatory-collaborative research project "PazAng," investigating the barriers and opportunities for systematic next-of-kin involvement in German psychiatric care. We conducted 15 guided semi-structured interviews with next of kin, and analyzed them using Reflexive Thematic Analysis. To ensure diverse perspectives, the participatory approach included both researchers with lived experience as next of kin and those without such experience. RESULTS: We analyzed four major thematic fields shaping the experiences of next of kin in psychiatric care: "Feeling rebuffed vs. welcomed," "Invisibility vs. feeling acknowledged," "(Repeated) Powerlessness vs. Agency," and "Paradoxical Assignment of Responsibility vs. Relief." Some positive experiences were reported when staff actively included next of kin, provided triangulating communication, and facilitated collaborative discussions. However, such cases were the exception rather than the norm. The findings underscore the urgent need for a cultural shift towards greater inclusion and recognition of next of kin in psychiatric care. CONCLUSION: A systematic change in psychiatric care is required to facilitate meaningful next-of-kin participation. This includes clear institutional policies, more focus on relational aspects, and a redefinition of participation beyond caregiving responsibilities. A more proactive, inclusive approach to next of kin could enhance support for both individuals in treatment and their next of kin while improving overall psychiatric care outcomes.