RT Journal Article
SR Electronic
T1 “We Feel Alone and Not Listened To”: Parents’ Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities
JF The Annals of Family Medicine
JO Ann Fam Med
FD American Academy of Family Physicians
SP 215
OP 222
DO 10.1370/afm.3106
VO 22
IS 3
A1 Needle, Jennifer
A1 Lee, Sey
A1 Ahmed, Amran
A1 Batres, Rodolfo
A1 Cha, Jinhee
A1 de la Parra, Pilar
A1 Pergament, Shannon
A1 Culhane-Pera, Kathleen A.
YR 2024
UL http://www.annfammed.org/content/22/3/215.abstract
AB PURPOSE The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents’ perspectives of their children’s health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota.METHODS We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach.RESULTS Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents’ experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child’s medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low–English proficient parents.CONCLUSIONS Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.