Birth defects research · 2026
Human-Centered Design of a Contextualized Service Delivery Model for Families of Infants With Major Congenital Anomalies in Kenya.
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Chepkemoi Audrey, McPheron Molly, Naanyu Violet, Carlucci James G, Kerich Caroline, Matelong Winnie, Kooreman Harold, McHenry Megan S, Bernard Caitlin, Kiano Marylydia, Midiwo Roselyn, Musick Beverly, Yiannoutsos Constantin T, Wools-Kaloustian Kara, Patel Rena C, Were Edwin, Humphrey John M, EA‐IeDEA consortium
Аннотация
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 challenges 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 interventions, 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.
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 challenges 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 interventions, 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.