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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

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Abstract

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.

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Acknowledgements

We would like to express our gratitude to all the women in this study who contributed their valuable time and energy of telling their stories about navigating ASD services, as well as the staff and clinical professionals at the Autism Clinic at Hughes Spalding Children’s Hospital.

Availability of Data and Material

Not available

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Not applicable

Funding

This study was supported by a research partnership between Children’s Healthcare of Atlanta and the Georgia Institute of Technology. Funding was also provided by the Ivan Allen College of Liberal Arts, Georgia Institute of Technology.

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Authors and Affiliations

  1. Emory University School of Medicine, 100 Woodruff Circle, Atlanta, GA, 30322, USA

    Stephanie Wagner

  2. Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA, 30322, USA

    Stephanie Wagner

  3. Department of Pediatrics, Morehouse School of Medicine, 720 Westview Drive, Atlanta, GA, 30310, USA

    I. Leslie Rubin

  4. The Rubin Center for Autism and Developmental Pediatrics, 750 Hammond Drive, Bldg. 1, Suite 100, Atlanta, GA, 30328, USA

    I. Leslie Rubin

  5. School of History and Sociology, Georgia Institute of Technology, 221 Bobby Dodd Way, Atlanta, GA, 30332-225, USA

    Jennifer S. Singh

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  1. Stephanie Wagner
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Jennifer S. Singh (qualitative) and Stephanie Wagner (quantitative). The first draft of the manuscript was written by Stephanie Wagner and Jennifer S. Singh, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Jennifer S. Singh.

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Ethics Approval

Approval was obtained from the Institutional Review Boards of Children’s Healthcare of Atlanta (#16-099), Georgia Institute of Technology, and Morehouse School of Medicine, as well as the Grady Research Oversight Committee. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

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Informed consent was obtained from all individual participants included in the study.

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Participants signed informed consent regarding publishing their data. All the participants were given a pseudonym in the presentation of our findings to protect their identity.

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The authors declare no competing interests.

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Wagner, S., Rubin, I.L. & Singh, J.S. 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. J. Racial and Ethnic Health Disparities 9, 1474–1487 (2022). https://doi.org/10.1007/s40615-021-01086-5

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