Nothing about them, without them!:Assessing and treating prolonged grief in children using co-creation

Background<br/>10% of children develop prolonged grief disorder (PGD). PGD is included in ICD-11 and DSM-5-TR. <br/>Rationale<br/>It is impossible to screen for PGD in youth, due to the lack of instruments measuring these newest criteria. It is also difficult to treat PGD in youth due to limited research on PGD treatment for youth. Together with children and experts, we co-created an instrument to assess ICD-11 and DSM-5-TR PGD in children/adolescents aged 8-18. This instrument is called the Traumatic Grief Inventory–Kids–Clinician-Administered (TGI-K-CA). Together with children, parents, and experts we co-created an Internet-based cognitive-behavioral treatment (iCBT).<br/><br/>Design<br/>Candidate-items of the TGI-K-CA were reviewed by bereaved children (N=17;aged 8-18) and five experts using cognitive-interviewing. Bereaved children/adolescents (N=90) completed the TGI-K-CA, and PTSD and quality of life measures. In co-design workshops, iCBT was co-developed with bereaved children/adolescents (N=6), parents (N=6), psychologists (N=4), and eHealth-experts (N=4).<br/><br/>Results<br/>Cognitive-interviewing resulted in TGI-K-CA. Preliminary analyses regarding its’ psychometric properties show good internal consistency (ω=0.90) and convergent validity, as evidenced by PGD being related to PTSD (ρ=0.70) and quality of life (ρ=-0.44). Co-creation resulted in an iCBT that meets the needs of children.<br/><br/>Conclusions<br/>Using co-creation resulted in the first screening tool for ICD-11 and DSM-5-TR PGD in bereaved youth. The TGI-K-CA seems to be valid and reliable, but future research should further test its’ psychometric properties. This is also the first study developing online treatment for PGD in youth, that has great potential for clinical practice.