In the landscape of mental health care, the experiences and voices of the families of patients often remain overshadowed by clinical narratives centered solely on the patients and healthcare professionals. A groundbreaking new study published in BMC Psychiatry, titled “As if we didn’t exist,” delves deeply into the lived experiences of next of kin as they navigate their interactions within the psychiatric health care system in Germany. This participatory reflexive thematic analysis illuminates a critical yet understudied dimension of psychiatric care – the role and perception of family members and close companions in a system fundamentally designed to heal.
The study is born from the pressing recognition that, while clinical guidelines broadly advocate for the integration of next of kin in psychiatric treatment, actual practice often diverges markedly from these ideals. Next of kin — whether parents, spouses, children, or close friends — routinely report feeling overlooked, excluded, or inadequately involved in care processes, which can exacerbate their own distress and complicate the recovery journey of the individuals they support. Through a participatory-collaborative research approach, the authors sought to bridge this gap by actively involving researchers with direct lived experience as next of kin alongside those without, thereby enriching the study’s insight and credibility.
Employing qualitative methods, the research team conducted 15 semi-structured interviews, dissecting the nuanced realities of these family members’ interactions with psychiatric professionals and institutions. Reflexive Thematic Analysis allowed the researchers to engage deeply and iteratively with the data, capturing not only factual accounts but also the emotional texture and power dynamics embedded in these encounters. This methodological rigor ensures the findings resonate with authenticity, portraying not just clinical challenges but human experiences.
Four major thematic fields emerged as central pillars shaping the narratives of next of kin: “Feeling rebuffed vs. welcomed,” “Invisibility vs. feeling acknowledged,” “(Repeated) Powerlessness vs. Agency,” and “Paradoxical Assignment of Responsibility vs. Relief.” These dualities poignantly underscore the tension between systemic shortcomings and the isolated positive instances where family members felt genuinely included. The theme of “Feeling rebuffed vs. welcomed” reflects the emotional rollercoaster experienced by next of kin, where interactions with psychiatric staff can range from cold dismissal to collaborative understanding.
“Invisibility vs. feeling acknowledged” captures a profound administrative and emotional dynamic: many next of kin felt as if their presence and needs were systematically neglected, reinforcing a sense of non-existence within the care ecosystem. However, acknowledgement – when it did occur – offered affirming spaces that validated their contributions and facilitated more effective care coordination. This is particularly consequential given the healthcare setting’s complexity and need for clear channels of communication outside of the patient-clinician dyad.
The theme of “(Repeated) Powerlessness vs. Agency” exposes a cyclical struggle for agency experienced by family members. Psychiatric care’s hierarchical nature often leaves next of kin feeling disempowered — dismissed in decision-making or burdened with responsibilities without adequate support or recognition. Yet in rare and valued moments, family members exercised agency through active involvement in care discussions, providing insights that affirmed their valued role in the recovery continuum.
Finally, the “Paradoxical Assignment of Responsibility vs. Relief” reflects the contradictory expectations placed on next of kin. They are often asked to assume a caregiving mantle laden with responsibilities, yet simultaneously encounter institutional hesitance to formally integrate them as partners in care. This discordance can generate significant stress and emotional burden, underscoring the urgent necessity for clear policy frameworks that redefine participation beyond conventional caregiving roles, emphasizing collaboration and shared responsibility.
Crucially, the study highlights that although positive experiences exist, these are exceptions rather than systemic norms. Instances where psychiatric professionals actively engaged and included next of kin through triangulated communication and collaborative dialogue were sparse but appreciated. This signals a clear roadmap for improvement: a culture shift is needed wherein next of kin are consistently perceived as vital stakeholders, not peripheral actors.
From a technical standpoint, the participatory research design stands out in this study. By integrating researchers who bring firsthand lived experience as relatives of psychiatric patients, the research methodology transcends traditional objectivity, embracing reflexivity that enriches data interpretation and thematic formation. This co-production model challenges hierarchies of expertise and validates experiential knowledge as a foundation for mental health systems reform.
Moreover, focusing on the German psychiatric healthcare context provides a valuable lens to explore the intersection of cultural, organizational, and policy factors influencing family inclusion. Germany’s diverse healthcare landscape, with its mix of outpatient, inpatient, and community-based services, represents both complexities and opportunities for embedding systemic family participation models that can potentially be extrapolated to wider European contexts.
The implications of this research are profound for psychiatric practice and policy. To foster meaningful next-of-kin participation, psychiatric institutions must develop and implement clear, actionable policies that champion inclusion, transparency, and respect for relational dynamics. Training psychiatric staff to appreciate the vital contributions of families and equipping them with communication and collaboration skills will be essential in transforming care delivery.
Further, this study calls for a redefinition of what constitutes participation. Moving beyond narrow notions of caregiving burden, participation should be envisioned as a holistic partnership enhancing therapeutic alliance, patient recovery, and family wellbeing. Such reconceptualization may also alleviate some of the unintended burdens felt by family members, shifting emphasis from responsibility to shared engagement and reciprocal support.
In sum, “As if we didn’t exist” provides an urgent wake-up call to the psychiatric community and policymakers alike. By systematically documenting the dichotomous and often painful experiences of next of kin, this study charts a path toward more inclusive, empathetic, and effective mental health care systems. The moral imperative is clear: next of kin are not invisible actors but essential collaborators in the journey toward recovery and wellness, deserving recognition, respect, and inclusion at every stage of psychiatric treatment.
The study represents a compelling example of how participatory research and nuanced thematic analysis can catalyze change, offering a replicable model for other health settings seeking to center the voices of families and caregivers. With mental health challenges growing globally, leveraging such insights can enhance service design, improve outcomes, and foster healthier societies where no one—patients or their families—feels invisible.
As psychiatric healthcare evolves, integrating next-of-kin perspectives should no longer be an aspirational guideline but a fundamental pillar of practice. The cultural shift toward inclusion, collaboration, and relational care illuminated by this German study is not just timely; it is imperative.
Subject of Research: Experiences of next of kin in their interactions with the psychiatric health care system in Germany.
Article Title: “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.
Article References:
Dietrich, N., Bahl, S., Bayer, S. et al. “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. BMC Psychiatry 25, 919 (2025). https://doi.org/10.1186/s12888-025-07481-0
Image Credits: AI Generated
