Underserved and Undermeasured: a Mixed-Method Analysis of Family-Centered Care and Care Coordination for Low-Income Minority Families of Children with Autism Spectrum Disorder
| Autor: | Jennifer S. Singh, Stephanie B. Wagner, I. Leslie Rubin |
|---|---|
| Rok vydání: | 2021 |
| Předmět: |
Low income
medicine.medical_specialty Health (social science) Sociology and Political Science biology Poverty Health Policy Public Health Environmental and Occupational Health Qualitative property medicine.disease biology.organism_classification Family centered care Atlanta Autism spectrum disorder Anthropology Family medicine Epidemiology medicine Thematic analysis Psychology |
| Zdroj: | Journal of Racial and Ethnic Health Disparities. 9:1474-1487 |
| ISSN: | 2196-8837 2197-3792 |
| DOI: | 10.1007/s40615-021-01086-5 |
| Popis: | This study examined how a racially and socioeconomically diverse group of caregivers of children with autism spectrum disorder (ASD) responds to national standard measures of family-centered care (FCC) and care coordination (CC) and what aspects of quality care are missing from these measures. Based on survey and interview data collected from 70 caregivers who have a child with ASD that receive services at a community-based autism clinic located in Atlanta, GA, we compared proportions of answers to FCC and CC questions to national and state representative data using chi-square analyses and contextualized our findings through a thematic analysis of qualitative interviews. Compared to national- and state-level data, the Atlanta autism clinic data had a higher percentage of participants who identified as Black, relied on public health insurance, and lived below 200% of the federal poverty line. The Atlanta autism clinic responses were significantly more positive in four measures of FCC but significantly less effective in two CC measures, including a lower reported percentage who received CC and greater reported percentage who needed extra help. Qualitative data revealed a range of positive meanings and challenges associated with FCC and identified areas of help needed beyond CC, including physical and mental health care and emotional connection, especially for low-income single Black female caregivers. Our mixed-method approach identified strengths in FCC, barriers to CC, and suggestions for developing more pragmatic questions in national surveys that address experiences of quality-of-care among low-income, racial minority families of children with ASD. |
| Databáze: | OpenAIRE |
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