Involving service users in intervention design: a participatory approach to developing a text-messaging intervention to reduce repetition of self-harm

Objective To engage a group of people with relevant lived experience in the development of a text-messaging intervention to reduce repetition of self-harm. Background Contact-based interventions, such as follow-up letters, postcards and telephone calls, have shown potential to reduce repetition of self-harm in those who present at Accident and Emergency departments. Text messaging offers a low-cost alternative that has not been tested. We set out to develop a text-based intervention. The process of intervention development is rarely reported and little is known about the impact of service user involvement on intervention design. Method We held a series of six participatory workshops and invited service users and clinicians to help us work out how to get the right message to the right person at the right time, and to simulate and test prototypes of an intervention. Results Service users rejected both the idea of a generic, 'one size fits all' approach and that of 'audience segmentation', maintaining that text messages could be safe and effective only if individualized. This led us to abandon our original thinking and develop a way of supporting individuals to author their own self-efficacy messages and store them in a personal message bank for withdrawal at times of crisis. Conclusions This paper highlights both the challenge and the impact of involving consumers at the development stage. Working with those with lived experience requires openness, flexibility and a readiness to abandon or radically revise initial plans, and may have unexpected consequences for intervention design.