Beyond Symptoms: a multi-perspective study on youth with severe and enduring mental health problems

Chanel H Bansema^1*Laura A Nooteboom¹Jacintha M Tieskens¹Lian Nijland¹Rianne de Soet¹Erik J Giltay²Wouter G Staal^3,4Robert R J M Vermeiren⁵

• ¹Department of Child and Adolescent Psychiatry, LUMC Curium, Leiden University Medical Center (LUMC), Leiden, Netherlands
• ²Department of Psychiatry, Leiden University Medical Center (LUMC), Leiden, Netherlands
• ³Child and Adolescent Psychiatry, Karakter, Nijmegen, Netherlands
• ⁴Leiden Institution for Brain and Cognition, Leiden, Netherlands
• ⁵Department of Child and Adolescent Psychiatry, LUMC Curium, and Department of Psychiatry, Leiden University Medical Center (LUMC), Leiden, Netherlands

Introduction: A group of youth in child-and-adolescent psychiatry (CAP) experiences severe and enduring mental health problems (SEMHP) transcending current classification systems. To support these youth timely and effectively, their characteristics require further exploration in clinical practice. Hence, this study aims to deepen our understanding of SEMHP characteristics in youth, taking into account perspectives from multiple stakeholders. Materials and Methods: Following an exploratory sequential design identifying SEMHP characteristics initially in depth (in a literature and qualitative study), digital questionnaires were completed in three subgroups of in total 155 participants, 1) 81 youth (Mage = 21, SD = 3), 2) 31 caregivers (Mage = 51, SD = 5), and 3) 43 clinicians (Mage = 41, SD = 11), rating each characteristic. All participants described being familiar as youth with SEMHP, a caregiver of youth with SEMHP, or a clinician working with SEMHP, and thus able to evaluate their nature. Results: The characteristics prolonged suffering, several areas of life affected, interpersonal distrust, internalization of SEMHP, limited daily functioning, and hopelessness were consistently recognized by the three participant groups. Youth tend to score higher on the individual characteristics, with a significant difference between groups in the recognition of masking behavior. Family characteristics and unsafe environments are far less recognized by caregivers, while societal characteristics including societal ignorance, stigma and overemphasis on classifying are significantly less recognized by clinicians. Discussion: Youth, caregivers, and clinicians shared common ground in recognizing the pervasiveness of SEMHP. However, differences in perspectives on characteristics present challenges for diagnostics of these youth. Masking behavior of youth is unsurprising and indicates that these youth need a specific approach in diagnostics. A holistic and multi-perspective understanding of SEMHP is crucial for effective support, as care for these youth must take a systemic and connection-focused approach. Additionally, clinicians must be critically aware of the societal context.