Co-Designing and Evaluating Additional Mothers and Babies Program Content for Expectant and New Parents of Children With Down Syndrome

SPECIFIC AIMS Down syndrome (Trisomy 21) is the most common genetic condition that causes Intellectual and Developmental Disability (IDD) in the U.S. with about 1 in 600 children born in the U.S. each year. Compared to children with other special health care needs, children with Down syndrome experience negative health outcomes and are twice as likely to have unmet health care and family support needs. Down syndrome can be diagnosed as early as 10 weeks gestation or as late as immediately after birth. Regardless of a pre- or post-natal diagnosis, expectant mothers and parents of infants with Down syndrome are at high risk for perinatal depression.

Perinatal depression is one of the most common complications of pregnancy, affecting over half a million parents in the U.S. each year. Perinatal depression is associated with adverse obstetric and neonatal outcomes, including fetal growth restriction and preterm birth. These complications are responsible for most neonatal morbidity and mortality and can increase negative health outcomes for infants with Down syndrome. In addition, perinatal depression can interfere with infant attachment and brain development, further exacerbating learning and behavioral problems in children with Down syndrome. Thus, mitigation of perinatal depression in expectant mothers and new parents of children with Down syndrome is critical to child development and public health.

Mothers and Babies (MB) is an empirically supported cognitive-behavioral intervention designed to prevent perinatal depression. MB consists of 9 weekly sessions, delivered individually or in a group setting. The United States Preventive Services Task Force recognized MB as one of the two most effective counseling interventions for perinatal depression prevention, with moderate to large effect sizes found across a series of randomized controlled trials (RCTs). However, expectant mothers and new parents of children with Down syndrome have critical needs that standard MB does not address. For example, parents report experiencing overwhelming emotions of grief, loss, and mourning when first learning about their child's Down syndrome diagnosis. As a parent of a child with Down syndrome, one of the MPIs knows that cultivating a strengths-based view of the Down syndrome diagnosis can reduce grief/loss and increase hope for the child's future. Parents of children with Down syndrome may also experience isolation. To combat isolation, parents need to hear about the thriving and supportive Down syndrome community, opportunities for their children to reach their potential, and the community supports available to them. The goal of this application is to adapt MB for expectant mothers and new parents of children with Down syndrome, adding intervention components designed to 1) reduce grief/loss and 2) increase social connection to the Down syndrome community. The investigators plan to co-design the Mothers and Babies Down Syndrome (MBDS) adaptation by adding specific content to reduce grief/loss and increase social support and convening MBDS in a group-based format, led by NADS staff and parent volunteers, and connecting families to larger Down Syndrome community networks.

Aim 1: Adapt MB for parents of infants with Down syndrome using a human-centered design approach. Adaptation will be guided by the Exploration, Preparation, Implementation, and Sustainment (EPIS process model, informed by mixed-methods approaches to engage parents of children with Down Syndrome. The investigators will conduct semi-structured interviews, aided by a pre-interview diary study, with individual parents and parent dyads of children with Down syndrome (N = 12). The investigators will then engage parents in co-design workshops to adapt and refine MB for parents of children with Down syndrome. The investigators will use feedback from Aim 1 to adapt content and assist in developing implementation strategies for the MB Down Syndrome (MBDS) program.

Aim 2: Conduct an open trial to assess feasibility and acceptability of the adapted virtual MBDS intervention with expectant mothers and new parents of children with Down syndrome (N = 12). At 4 time points (Baseline, mid- and post-intervention, and 3-month post intervention) the investigators will assess: 1) Acceptability (e.g., satisfaction, facilitators/barriers to participation, and reasons for not attending sessions); 2) Utility - how useful parents found the program to be, and parents' use of curricular elements; 3) Feasibility (number referred who met eligibility, enroll; time to complete assessments and group sessions; and self-reported feasibility).