Measuring adversity without harm: Survivors’ critique and recommendations for trauma-informed assessment

Background: Adverse Childhood Experiences (ACEs) are strongly linked to poor mental, physical, and social outcomes across the lifespan. However, two of the most widely used retrospective ACE tools, the Adverse Childhood Experiences Questionnaire (ACE-Q) and Childhood Trauma Questionnaire-Short Form (CTQ-SF), have been criticised for narrow content and simplistic response formats, raising concerns about validity.Objective: This study examined how adult survivors of childhood adversity perceive the ACE-Q and CTQ-SF, focusing on their content, structure, language, and emotional impact, and identified survivor-driven recommendations for improvement.Participants and Setting: One hundred adults with self-reported childhood adversity completed an anonymous online survey.Methods: Participants reviewed both tools and provided open-ended feedback. Reflexive thematic analysis identified key themes on perceived limitations and improvements.Results: Survivors raised three overarching concerns: (1) Content gaps, including exclusion of socio-environmental adversities (e.g., discrimination) and contemporary forms of trauma; (2) Format limitations, with critiques of ambiguous wording and lack of frequency, duration, or context, and (3) Ethical concerns and trauma-informed recommendations, with participants emphasising explicit and invalidating language and insensitive item ordering. Conclusions: Findings underscore the urgent need for ACE tools that are inclusive, contextually valid, and co-designed with survivors. Embedding lived experience in measure development is vital to ensure ethical, accurate assessment and enhance their value in research, practice, and policy.