IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v117y2014icp50-57.html
   My bibliography  Save this article

The social life of health records: Understanding families' experiences of autism

Author

Listed:
  • Angell, Amber M.
  • Solomon, Olga

Abstract

Outside of the epidemiological surveillance studies of autism prevalence, health records of children diagnosed with autism have not been sufficiently examined, yet they provide an important lens for showing how autism diagnosis, services and interventions are negotiated, coordinated and choreographed by families and practitioners across multiple settings. This article provides a multifaceted understanding of these processes from an ethnographic and discourse analytic perspective that reveals structural and interactional phenomena contributing to disparities in autism diagnosis and services. We consider health records as dualistic, material-discursive artifacts that are socio-interactionally co-constructed and variably interpreted, contested and utilized across home, school and clinic contexts. We chronicle several families' experiences of their children's autism diagnoses and interventions and describe ways in which health records are socially constructed, curated and placed in the middle of clinical encounters. We show how the parents in our study draw upon health records' material-discursive properties to display epistemic authority, expertise and knowledge in interactions with healthcare and school professionals involved in authorizing and planning their children's care. We describe how the parents experience the health records' clinical portrayals of their children and themselves, and how the parents' portrayals of their children are tacitly ratified or negated in the health records. The data include health record reviews, narrative interviews with parents and practitioners, and clinical observations. These data were collected between October 2009 and August 2012 as part of a larger study on disparities in autism diagnosis, interventions and services experienced by African American children with autism and their families living in Los Angeles County, California. Our analysis reveals the central role of health records in maintaining continuity of an autism diagnosis, interventions and services. This article contributes to enhanced professional awareness, parent-professional partnerships, and equity in the provision of healthcare and human services related to autism.

Suggested Citation

  • Angell, Amber M. & Solomon, Olga, 2014. "The social life of health records: Understanding families' experiences of autism," Social Science & Medicine, Elsevier, vol. 117(C), pages 50-57.
    • Handle: RePEc:eee:socmed:v:117:y:2014:i:c:p:50-57
    DOI: 10.1016/j.socscimed.2014.07.020
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953614004493
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2014.07.020?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Mandell, D.S. & Wiggins, L.D. & Carpenter, L.A. & Daniels, J. & DiGuiseppi, C. & Durkin, M.S. & Giarelli, E. & Morrier, M.J. & Nicholas, J.S. & Pinto-Martin, J.A. & Shattuck, P.T. & Thomas, K.C. & Yea, 2009. "Racial/ethnic disparities in the identification of children with autism spectrum disorders," American Journal of Public Health, American Public Health Association, vol. 99(3), pages 493-498.
    2. Solomon, Olga & Lawlor, Mary C., 2013. "“And I look down and he is gone”: Narrating autism, elopement and wandering in Los Angeles," Social Science & Medicine, Elsevier, vol. 94(C), pages 106-114.
    3. Valentine, Kylie, 2010. "A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder," Social Science & Medicine, Elsevier, vol. 71(5), pages 950-957, September.
    4. Feagin, Joe & Bennefield, Zinobia, 2014. "Systemic racism and U.S. health care," Social Science & Medicine, Elsevier, vol. 103(C), pages 7-14.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Cruz, Taylor Marion, 2022. "The social life of biomedical data: Capturing, obscuring, and envisioning care in the digital safety-net," Social Science & Medicine, Elsevier, vol. 294(C).

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Yanrong Qiu & Kaihuai Liao & Yanting Zou & Gengzhi Huang, 2022. "A Bibliometric Analysis on Research Regarding Residential Segregation and Health Based on CiteSpace," IJERPH, MDPI, vol. 19(16), pages 1-21, August.
    2. Winskell, Kate & Sabben, Gaëlle, 2016. "Sexual stigma and symbolic violence experienced, enacted, and counteracted in young Africans’ writing about same-sex attraction," Social Science & Medicine, Elsevier, vol. 161(C), pages 143-150.
    3. Slaughter-Acey, Jaime C. & Brown, Tony N. & Keith, Verna M. & Dailey, Rhonda & Misra, Dawn P., 2020. "A tale of two generations: Maternal skin color and adverse birth outcomes in Black/African American women," Social Science & Medicine, Elsevier, vol. 265(C).
    4. Thorsen, Maggie L. & Thorsen, Andreas & McGarvey, Ronald, 2019. "Operational efficiency, patient composition and regional context of U.S. health centers: Associations with access to early prenatal care and low birth weight," Social Science & Medicine, Elsevier, vol. 226(C), pages 143-152.
    5. Scavarda, Alice & Ariel Cascio, M., 2022. "Embracing and rejecting the medicalization of autism in Italy," Social Science & Medicine, Elsevier, vol. 294(C).
    6. Headley, Andrea M. & Blount-Hill, Kwan-Lamar & St. John, Victor J., 2021. "The psychology of justice buildings: A survey experiment on police architecture, public sentiment, and race," Journal of Criminal Justice, Elsevier, vol. 73(C).
    7. Leddy, Anna M. & Whittle, Henry J. & Shieh, Jacqueline & Ramirez, Catalina & Ofotokun, Ighovwerha & Weiser, Sheri D., 2020. "Exploring the role of social capital in managing food insecurity among older women in the United States," Social Science & Medicine, Elsevier, vol. 265(C).
    8. Richmond, Jennifer & Boynton, Marcella H. & Ozawa, Sachiko & Muessig, Kathryn E. & Cykert, Samuel & Ribisl, Kurt M., 2022. "Development and Validation of the Trust in My Doctor, Trust in Doctors in General, and Trust in the Health Care Team Scales," Social Science & Medicine, Elsevier, vol. 298(C).
    9. Hee, Puanani J. & Mueller, Liam O. & Orimoto, Trina E. & Maesaka, Tristan J. & Mueller, Charles W., 2023. "Combining local aggregate and treatment research findings to inform clinical decision making in youth mental health care," Children and Youth Services Review, Elsevier, vol. 154(C).
    10. Metzl, Jonathan M. & Hansen, Helena, 2014. "Structural competency: Theorizing a new medical engagement with stigma and inequality," Social Science & Medicine, Elsevier, vol. 103(C), pages 126-133.
    11. Rasmussen, Pernille Skovbo & Pedersen, Inge Kryger & Pagsberg, Anne Katrine, 2020. "Biographical disruption or cohesion?: How parents deal with their child's autism diagnosis," Social Science & Medicine, Elsevier, vol. 244(C).
    12. Akinade, Temitope & Kheyfets, Anna & Piverger, Naissa & Layne, Tracy M. & Howell, Elizabeth A. & Janevic, Teresa, 2023. "The influence of racial-ethnic discrimination on women's health care outcomes: A mixed methods systematic review," Social Science & Medicine, Elsevier, vol. 316(C).
    13. Sparkle Springfield & Feifei Qin & Haley Hedlin & Charles B. Eaton & Milagros C. Rosal & Herman Taylor & Ursula M. Staudinger & Marcia L. Stefanick, 2022. "Modifiable Resources and Resilience in Racially and Ethnically Diverse Older Women: Implications for Health Outcomes and Interventions," IJERPH, MDPI, vol. 19(12), pages 1-19, June.
    14. Riley, Taylor & Enquobahrie, Daniel A. & Callegari, Lisa S. & Hajat, Anjum, 2024. "Structural gendered racism and preterm birth inequities in the United States," Social Science & Medicine, Elsevier, vol. 348(C).
    15. Dominique H. Como & Lucía I. Floríndez-Cox & Leah I. Stein Duker & Sharon A. Cermak, 2022. "Oral Health Barriers for African American Caregivers of Autistic Children," IJERPH, MDPI, vol. 19(24), pages 1-14, December.
    16. Richard W. Johnson, 2021. "Policy Options to Reduce the Black‐White Gap in Retirement Security," Journal of Elder Policy, John Wiley & Sons, vol. 1(2), pages 83-112, March.
    17. Cécile Rousseau & Youssef Oulhote & Mónica Ruiz-Casares & Janet Cleveland & Christina Greenaway, 2017. "Encouraging understanding or increasing prejudices: A cross-sectional survey of institutional influence on health personnel attitudes about refugee claimants' access to health care," PLOS ONE, Public Library of Science, vol. 12(2), pages 1-14, February.
    18. Turowetz, Jason, 2022. "Interaction order and the labeling of disorder: How parents mobilize personal knowledge in the clinic to resist medicalization of their children's behavior," Social Science & Medicine, Elsevier, vol. 294(C).
    19. Salway, Sarah & Mir, Ghazala & Turner, Daniel & Ellison, George T.H. & Carter, Lynne & Gerrish, Kate, 2016. "Obstacles to “race equality” in the English National Health Service: Insights from the healthcare commissioning arena," Social Science & Medicine, Elsevier, vol. 152(C), pages 102-110.
    20. Maeve E. Wallace & Carmen Green & Lisa Richardson & Katherine Theall & Joia Crear-Perry, 2017. "“Look at the Whole Me”: A Mixed-Methods Examination of Black Infant Mortality in the US through Women’s Lived Experiences and Community Context," IJERPH, MDPI, vol. 14(7), pages 1, July.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:117:y:2014:i:c:p:50-57. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.