Pediatricians’ role in healthcare for Latino autistic children: Shared decision-making versus “You’ve got to do everything on your own”

Abstract

Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism “diagnostic odyssey.” Pediatricians have a critical role in the “diagnostic odyssey,” but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the “diagnostic odyssey” but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians’ autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children. Lay Abstract Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians’ lack of autism knowledge, creates barriers to “shared decision-making” between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents’ different pathways to an autism assessment, a process that is sometimes called the “diagnostic odyssey.” The parents reported that conventional healthcare met their needs for their child’s physical health but not for their child’s developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.