Background and Goal: Nearly 500,000 children in the U.S. live with serious or life-threatening illnesses. Family caregivers, especially parents, face the challenges of managing complex medical needs, navigating the health system, and advocating for their children. This often leads to psychological distress, depression, and anxiety for caregivers. Understanding the experiences of parents of children with serious illnesses, especially those who are racially and ethnically diverse, remains limited. This study examined the experiences of Somali, Hmong, and Latin American parents in pediatric serious illness care, aiming to identify improvements and reduce disparities in pediatric health care.
Study Approach: Researchers formed a team in partnership with a community advisory board consisting of Somali, Hmong, and Latin American community leaders and parents, who provided input on study design, analysis, and recommendations. Participants, including caregivers and parents, were recruited through provider referrals, flyers, social media, and community networks in the Minneapolis-St. Paul, Minnesota, metropolitan area. They completed demographic surveys and participated in either a 1.5- to 2-hour community-specific focus group or individual Zoom or telephone interviews, guided by a structured interview guide developed from literature, professional and community insights, and advisory board feedback. The interviews were transcribed and analyzed to identify common aspects of the parents' experiences across all three communities.
Main Results: Twenty-six parents participated. All but one were mothers. Their children, ranging from infants to adults, suffered from serious illnesses, some requiring intensive medical support like feeding tubes or ventilators. Researchers found that professional interpreters were important to improve communication and trust. Other key findings include a strong desire for respectful, trusting relationships with medical staff, highlighted by three main themes:
- Informed understanding helps parents prepare for their children's medical needs
- Compassionate staff interactions make parents feel their children are well cared for
- Respected parental advocacy ensures parents' insights are valued
Challenges included language barriers, systemic mistrust, and experiences of racism.
Why It Matters: Fostering caring and compassionate dialogue that involves both parent and medical staff point of view is essential for building trust and providing quality care. Active listening by clinicians, collaboration, and shared decision making are particularly important for parents from diverse communities. Addressing patients' religious, spiritual, and cultural needs also helps build trust that their children are well cared for. The study advocates for interventions at both individual and systemic levels, driven by community voices like those of the parents in this study.
"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities
Jennifer Needle, MD, MPH, HEC-C, et al
University of Minnesota, Minneapolis, Minnesota
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