Lived experience in layers – personal, professional and partnership: an autoethnographic exploration of the evaluation of a drug education programme

Background The experience for a drug education provider of being externally evaluated is an under-researched area, especially when this is a charity founded by a parent in response to the drug-related death of their child. With increased ambition to incorporate lived experience in research, better understanding of the sensitivities involved will help academics ensure their research is managed with appropriate care.Methods Taking an autoethnographic approach, this paper draws on the provider’s internal evaluation data, information collected as part of an externally conducted evaluation, and reflexive accounts based on self-observation and memory work.Results Evaluation findings demonstrate that the control a drug education provider has over the outcomes of its provision is limited by schools, teachers and the learning environment. The anxiety caused by these outcomes coming under external scrutiny is exacerbated for a bereaved parent, whose relationship with the charity they founded and the work it undertakes is complex.Conclusion The findings highlight the importance of the relationship between an evaluator and a provider with lived experience, and the value of a formative approach, with transparency in communication, the opportunity for active engagement for the provider, and sensitivity in dissemination of findings.