Mothers with Intellectual/Developmental Disabilities and Behavioral Health Conditions and Community Experts Provide...

Area of Science:

• Public Health
• Disability Studies
• Behavioral Health

Background:

• Mothers with intellectual and developmental disabilities (IDD) face significant perinatal risks, often heightened by co-occurring behavioral health (BH) conditions.
• Existing treatments and services may be inaccessible, irrelevant, or ineffective for this population, compromising maternal and infant well-being.

Purpose of the Study:

• To convene diverse experts, including mothers with IDD/BH, to identify priorities for improving treatment, services, systems, and research.
• To gather lived experiences and expert perspectives to inform actionable recommendations.

Main Methods:

• A five-session virtual Ideas Lab workshop series engaged 30 community experts.
• Participants completed surveys and engaged in brainstorming, grouping, and ranking activities to identify key themes and recommendations.

Main Results:

• Two broad categories of recommendations emerged: cross-cutting themes (accessibility, diversity, trauma, trust) and substantive themes (services, peer support, provider training, systems navigation).
• Research priorities focused on incorporating mother-driven questions and enhancing researcher engagement with the IDD/BH community.

Conclusions:

• Tailored, accessible, and trauma-informed approaches are crucial for supporting mothers with IDD/BH.
• Community-engaged research, prioritizing the voices and needs of mothers with IDD/BH, is essential for advancing effective interventions and systems.