Barriers to Service Access for Immigrant Families of Children With Developmental Disabilities: A Scoping Review

Abstract

This scoping review explores (a) barriers faced by immigrant families of children with intellectual and developmental disabilities (IDD) when accessing healthcare-related services in the United States, (b) where research stands based on the health disparity research framework, and (c) implications for future health disparities research with this population. Our scoping review found 26 empirical studies published between 2000 and 2020 that met our inclusion criteria. Data were extracted and synthesized based on the stages of research outlined in the health disparity research framework. Overall, immigrant families experienced barriers on multiple levels including patient, provider, and healthcare system levels. Studies focusing on detecting and reducing disparities are emerging. We conclude with recommendations for future research and practice with immigrant families of children with IDD.

Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support

“…Language barriers have in previous research been found to affect parents' experiences of health care contacts and access to support (Kittelsaa, 2012;Xu et al, 2022). The current study did not find evidence that interpretation needs play a role in patterns of parenting stress and access to sufficient support.…”

“…Families of children with disabilities are at greater risk of social isolation (Griffith and Hastings, 2014;Emerson and Brigham, 2015;Thompson-Janes et al, 2016) and may have limited access to informal support. Parents with an immigrant background may have limited access to informal support due to a reduced social network and less support from extended family and friends following migration (Khanlou et al, 2017;Xu et al, 2022). Based on Perry's model this could be seen as an "other life stressor."…”

“…In 2022, 20% of the Swedish population were born outside Sweden (Statistics Sweden, 2023). Several studies have found language and communication difficulties to constitute one of the greatest barriers of access to formal support for immigrant families of children with disabilities (Kittelsaa, 2012;Xu et al, 2022). The quality of language interpretation services varies and communication between parents and health services can be impeded despite the presence of an interpreter (Kittelsaa, 2012;Hadziabdic and Hjelm, 2019).…”

Creating Family-Centred Support for Preschoolers with Developmental Disabilities in Low-Income Countries: A Rapid Review to Guide Practitioners

“…And they are not confined to low-income nations. Arguably, there are lessons here for service delivery in more affluent countries, especially for immigrant families who have preschoolers with disabilities [ 59 , 60 ].…”

Nurturing the Positive Mental Health of Autistic Children, Adolescents and Adults alongside That of Their Family Care-Givers: A Review of Reviews

“…The authors describe cultural norms of typical and atypical behaviours, culture-specific approaches to parenting, mental health literacy, cultural beliefs, attitudes and stigma to disability, as well as the need to reflect on the affordability, availability, accessibility, and acceptability of services in low-and middle-income countries (LMICs) in particular. Indeed, these insights must be borne in mind when responding to the needs of people from minority cultures living in affluent countries as citizens or immigrants [51].…”