Human-centered design of a contextualized service delivery model for families of infants with major congenital anomalies in Kenya

Abstract

Background: Congenital anomalies (CAs) are a major cause of childhood mortality and disability in low- and middle-income countries. Our study explored caregiver experiences of infants with major CAs in Kenya and co-developed interventions using human-centered design (HCD). Methods: We conducted a qualitative study at Kenya's second largest referral hospital (August 2023 to January 2024). Thirty-one caregivers of 23 infants with major CAs completed interviews on experiences and care needs, analyzed thematically using the socio-ecological model (individual, family, healthcare, and community domains). We conducted three HCD workshops with 19 healthcare providers and 15 caregivers to co-develop interventions to improve CA services. Results: Caregivers reported emotional distress, stigma, and financial and geographic barriers to care. Key healthcare chal- lenges included limited antenatal diagnosis, inadequate provider communication, insufficient peer support, and poor access to CA information. Community stigma contributed to parental isolation and distress, though social and spiritual networks offered coping support. Workshop participants identified stigma and fragmented care as critical issues and proposed feasible interven- tions, including caregiver support groups, dedicated counselors, provider training, integrated community counseling, improved infrastructure, and stronger support networks to enhance person-centered care. Conclusions: Engaging caregivers and providers through HCD highlighted major psychosocial and healthcare barriers and generated contextually relevant strategies to improve care for infants with CAs in Kenya. Future research should evaluate the implementation and effects of these interventions on patient- and family-centered outcomes