Building a Community Partnership to Meet the Needs of Parents of Neurodivergent Children.

BACKGROUND

Massachusetts General Hospital and the Federation for Children with Special Needs staff partnered to conduct the Supporting Parents Raising Kids trial. Supporting Parents Raising Kids compares a mind body intervention, stress management and relaxation training (SMART) learning and attentional disabilities (LAD), and a comparison health promotion intervention, Health Enhancement Program, for parents of children with LAD.

OBJECTIVES

We describe how the partnership collaboratively adapted the proposed trial and treatments.

METHODS

Massachusetts General Hospital and the Federation for Children with Special Needs staff contributed professional and lived experience expertise of families of children with LAD. This was done through collaborative leadership, shared learning about institutional differences, listening sessions, treatment manual review sessions, and a shared decisions process.

RESULTS

Bridging cultural differences and engaging in a shared decision-making process resulted in trial design and treatment adaptations that resulted in a successful collaboration.

CONCLUSIONS

Co-creation of a study requires commitment and partnership. Collaboratively developed trial improvements will strengthen community-based implementation of an open pilot trial and subsequent full trial.