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Abstract: Developmental Screening with Recent Immigrant and Refugee Children: A Preliminary Report

Author(s): Susanne P. Martin-Herz, MD, PhD; Talya Kemper, MS; Megumu Brownstein, MSW, MPH; John F. McLaughlin, MD
Reviewer(s): Kathy TeKolste, MD
Date Authored: February 01, 2012
Link to the full report which includes background, literature review, qualitative findings, recommendations and discussion.

The inclusion of standardized developmental and behavioral screening (SDBS) is now recommended by the American Academy of Pediatrics (AAP) at specific ages as part of well-child care. Early identification and intervention is considered an important factor influencing long-term outcome in children with developmental delay. Nonetheless, there is evidence that less than 50% of pediatricians routinely follow these AAP recommendations. Several reasons have been cited for not using SDBS; however, routine SDBS has been shown to be feasible even in busy primary care practices, particularly when reimbursement and practice-based support are included.

The routine use of SDBS greatly increases rates of identification of developmental delay. This is particularly important given that only about a quarter of children estimated to have developmental delay in the United States are receiving services. Children from ethnic minority backgrounds have been found to receive diagnoses of Autism Spectrum Disorders (ASDs) later than white children, and there is strong concern that this delay in diagnosis may be even more substantial in recent immigrant children or those whose parents have lower English-language proficiency regardless of ethnicity.

To explore factors that may impact diagnosis of developmental delays, interviews were conducted at Harborview Medical Center in Seattle with six bilingual/bicultural caseworker/cultural mediators (CCMs) who serve patients and their families with limited English proficiency.

Attitudes and beliefs that may be important to developmental screening and diagnosis of developmental delays included:

Parental Reaction: Elements of blame, shame and parental confusion about the etiology of the delay may be factors in acknowledging and addressing developmental concerns.

Cultural and Religious Beliefs: Statements regarding benevolent and non-benevolent “Higher Powers,” karma, and the idea that a child might have a disability because of something done in a previous life emerged. Attitudes of acceptance (e.g., “God made him, so it doesn’t bother me.”) were also voiced.

Inheritance: The idea that one may inherit behaviors or the way one acts from individuals in earlier generations was mentioned.

Denial: The sentiment that a child was either not delayed or was delayed but would catch up was expressed in multiple interviews. Developmental delays were at times attributed to the refugee process, needing more time to acculturate, or a language barrier.

Potential barriers to developmental screening, diagnosis and treatment included issues such as language, transportation, education and trust, among others.

Suggestions for improving developmental screening and service access for immigrant and refugee populations included addressing transportation issues, improving communication, and continuing educational efforts about disability in schools and childcare sites, among member communities and with parents. Some recommendations to improve communication were:

  • Use simple language.
  • Give information in small amounts and in more frequent meetings over time.
  • Decrease the use of diagnostic labels when speaking with families.
  • Schedule pre-appointment conference times for the provider and interpreter to check in prior to appointments when screening is planned or concerns about developmental delays will be expressed by the provider.

Link to full report.