Developing a Scalable FASD-Informed Person-Centered Planning Intervention

Project Summary/Abstract

People with fetal alcohol spectrum disorders (FASD) experience barriers to care and a lower quality of life (QOL). FASD-

informed services and supports are lacking, especially during the transition to adulthood – a critical developmental period

for QOL. The proposed project will develop and initiate testing of a scalable person-centered planning (PCP) intervention

to support QOL for adolescents and adults with FASD. PCP is an evidence-based intervention for people with disabilities.

Research suggests PCP is a good fit FASD; however, it has yet to be adapted or tested with this population. In this project, we will use rigorous implementation science frameworks to systematically adapt and test a PCP intervention for adolescents and adults with FASD. Given the importance of social support networks in PCP, we will also draw upon the

growing literature and team expertise on social network interventions to inform the development and evaluation of the

intervention. Consistent with other interventions in our lab, we expect the proposed intervention to leverage technology to offer scalable solutions to overcome current barriers to care. During the R61 phase of the project, we will use the

implementation science framework “Intervention Mapping – Adapt” to carefully adapt the core principles and methods of PCP and social network interventions for FASD. This 6-step process involves a planning team of people with FASD and other stakeholders and careful attention to theory and logic models to guide adaptation decisions. Based on our

preliminary logic models, self-determination theory is a strong fit with the proposed intervention that we are currently

calling “Thrive.” Additional research activities in Aim 1 will also inform the planning group’s decision making as they refine logic models, determine intervention structure and components, develop materials, and finalize evaluation procedures. Specifically in Aim 1a, we will conduct individual and group interviews with adolescents and adults with

FASD and members of their social networks to characterize key features of their support networks that may be amenable

to intervention. Following initial production of intervention materials, we will complete two rounds of usability testing (5 participants per round) in Aim 1b to aid in refining intervention materials and evaluation procedures for the pilot randomized controlled trial (RCT) in the R33 phase. Following successful attainment of R61 milestones, we will conduct

a type 1 hybrid effectiveness-implementation pilot RCT of the developed Thrive intervention (R33). This trial design involves gathering data on both effectiveness and implementation outcomes, which will help us optimize the intervention

for future larger-scale trials and more rapid translation into community settings. We will recruit 60 adolescents and adults (ages 15-30) with FASD to participate in the pilot RCT, with random assignment to the 1) Thrive PCP intervention or 2)

comparison group receiving social network and strengths assessments only. Although significance testing and effect sizes

will be calculated, a larger emphasis will be placed on feasibility to guide the design of a fully powered larger-scale RCT R01 application. For example, in addition to the feasibility of the intervention itself, we will assess feasibility of

recruitment and trial procedures, sensitivity of measures to intervention change, and intervention process. Our proposed PCP intervention has high potential to improve QOL of people with FASD at the critical transition to adulthood.