TY - JOUR
T1 - Healthcare experiences of patients with Down syndrome from primarily Spanish-speaking households
AU - Chung, Jeanhee
AU - Krell, Kavita
AU - Pless, Albert
AU - Michael, Carie
AU - Torres, Amy
AU - Baker, Sandra
AU - Blake, Jasmine M.
AU - Caughman, Kelli
AU - Cullen, Sarah
AU - Gallagher, Maureen
AU - Hoke-Chandler, Roxanne
AU - Maina, Julius
AU - McLuckie, Diana
AU - O'Neill, Kate
AU - Peña, Angeles
AU - Royal, Dina
AU - Slape, Michelle
AU - Spinazzi, Noemi Alice
AU - Torres, Carlos G.
AU - Skotko, Brian G.
N1 - Publisher Copyright:
© 2023 Wiley Periodicals LLC.
PY - 2023/8
Y1 - 2023/8
N2 - We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish-speaking. Data were collected through three methods: (1) a nationally distributed, 20-item survey, (2) two focus groups with seven family caregivers of individuals with DS who self-identified as living in primarily Spanish speaking households, and (3) 20 interviews with primary care providers (PCPs) who care for patients who are underrepresented minorities. Standard summary statistics were used to analyze the quantitative survey results. Focus group and interview transcripts, as well as an open-ended response question in the survey, were analyzed using qualitative coding methods to identify key themes. Both caregivers and PCPs described how language barriers make giving and receiving quality care difficult. Caregivers additionally described condescending, discriminatory treatment within the medical system and shared feelings of caregiver stress and social isolation. Challenges to care experienced by families of individuals with DS are compounded for Spanish-speaking families, where the ability to build trust with providers and in the health care system may be compromised by cultural and language differences, systemic issues (lack of time or inability to craft more nuanced schedules so that patients with higher needs are offered more time), mistrust, and sometimes, overt racism. Building this trust is critical to improve access to information, care options, and research opportunities, especially for this community that depends on their clinicians and nonprofit groups as trusted messengers. More study is needed to understand how to better reach out to these communities through primary care clinician networks and nonprofit organizations.
AB - We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish-speaking. Data were collected through three methods: (1) a nationally distributed, 20-item survey, (2) two focus groups with seven family caregivers of individuals with DS who self-identified as living in primarily Spanish speaking households, and (3) 20 interviews with primary care providers (PCPs) who care for patients who are underrepresented minorities. Standard summary statistics were used to analyze the quantitative survey results. Focus group and interview transcripts, as well as an open-ended response question in the survey, were analyzed using qualitative coding methods to identify key themes. Both caregivers and PCPs described how language barriers make giving and receiving quality care difficult. Caregivers additionally described condescending, discriminatory treatment within the medical system and shared feelings of caregiver stress and social isolation. Challenges to care experienced by families of individuals with DS are compounded for Spanish-speaking families, where the ability to build trust with providers and in the health care system may be compromised by cultural and language differences, systemic issues (lack of time or inability to craft more nuanced schedules so that patients with higher needs are offered more time), mistrust, and sometimes, overt racism. Building this trust is critical to improve access to information, care options, and research opportunities, especially for this community that depends on their clinicians and nonprofit groups as trusted messengers. More study is needed to understand how to better reach out to these communities through primary care clinician networks and nonprofit organizations.
KW - Down syndrome
KW - Hispanic
KW - Spanish language
KW - diversity
KW - race
KW - trisomy 21
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U2 - 10.1002/ajmg.a.63250
DO - 10.1002/ajmg.a.63250
M3 - Article
C2 - 37338115
AN - SCOPUS:85162246750
SN - 1552-4825
VL - 191
SP - 2132
EP - 2141
JO - American Journal of Medical Genetics, Part A
JF - American Journal of Medical Genetics, Part A
IS - 8
ER -