IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v79y2013icp76-83.html
   My bibliography  Save this article

“They silently live in terror…” why sleep problems and night-time related quality-of-life are missed in children with a fetal alcohol spectrum disorder

Author

Listed:
  • Ipsiroglu, Osman S.
  • McKellin, William H.
  • Carey, Norma
  • Loock, Christine

Abstract

Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as inattention, hyperactivity, and cognitive and emotional impairments. However, symptoms of sleep deprivation are solely associated with typical daytime diagnosis, such as attention deficit hyperactivity disorder (ADHD) and treated with psychotropic medications. To understand how and why SPs are missed, we conducted qualitative interviews (QIs) with six parents and seven health care professionals (HCPs), and performed comprehensive clinical sleep assessments (CCSAs) in 27 patients together with their caregivers referred to our clinic for unresolved SPs. We used narrative schema and therapeutic emplotment in conjunction with analyzes of medical records to appropriately diagnose SPs and develop treatment strategies. The research was conducted at British Columbia Children's Hospital in Vancouver (Canada) between 2008 and 2011. In the QIs, parents and HCPs exhibited awareness of the significance of SPs and the effects of an SP on the daytime behaviors of the child and the associated burdens on the parents. HCPs' systemic inattention to the sequelae of SPs and the affected family's wellbeing appears due to an insufficient understanding of the various factors that contribute to nighttime SPs and their daytime sequelae. In the CCSAs, we found that the diagnostic recognition of chronic SPs in children and adolescents was impaired by the exclusive focus on daytime presentations. Daytime behavioral and emotional problems were targets of pharmacological treatment rather than the underlying SP. Consequently, SPs were also targeted with medications, without investigating the underlying problem. Our study highlights deficits in the diagnostic recognition of chronic SPs among children with chronic neurodevelopmental disorders/disabilities and proposes a clinical practice strategy, based on therapeutic emplotment that incorporates patients and parents' contributions in recognizing SPs and related sequelae in designing appropriate treatment and care.

Suggested Citation

  • Ipsiroglu, Osman S. & McKellin, William H. & Carey, Norma & Loock, Christine, 2013. "“They silently live in terror…” why sleep problems and night-time related quality-of-life are missed in children with a fetal alcohol spectrum disorder," Social Science & Medicine, Elsevier, vol. 79(C), pages 76-83.
    • Handle: RePEc:eee:socmed:v:79:y:2013:i:c:p:76-83
    DOI: 10.1016/j.socscimed.2012.10.027
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953612007915
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2012.10.027?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. Mitton, Craig & Donaldson, Cam, 2002. "Setting priorities in Canadian regional health authorities: a survey of key decision makers," Health Policy, Elsevier, vol. 60(1), pages 39-58, April.
    2. Mattingly, Cheryl, 1994. "The concept of therapeutic 'emplotment'," Social Science & Medicine, Elsevier, vol. 38(6), pages 811-822, March.
    3. Mckellin, William H., 1995. "Hearing Impaired families: The social ecology of hearing loss," Social Science & Medicine, Elsevier, vol. 40(11), pages 1469-1480, June.
    Full references (including those not matched with items on IDEAS)

    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. Barbara Bini & Milena Vainieri & Sabina Nuti, 2015. "Definizione delle priorit? di intervento in sanit?: approcci socio-tecnici a confronto," MECOSAN, FrancoAngeli Editore, vol. 2015(93), pages 49-73.
    2. Rhodes, Tim & Bernays, Sarah & Terzic, Katarina Jankovic, 2009. "Medical promise and the recalibration of expectation: Hope and HIV treatment engagement in a transitional setting," Social Science & Medicine, Elsevier, vol. 68(6), pages 1050-1059, March.
    3. Dumit, Joseph, 2006. "Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses," Social Science & Medicine, Elsevier, vol. 62(3), pages 577-590, February.
    4. Radley, Alan & Mayberry, John & Pearce, Melanie, 2008. "Time, space and opportunity in the outpatient consultation: 'The doctor's story'," Social Science & Medicine, Elsevier, vol. 66(7), pages 1484-1496, April.
    5. Reeleder, David & Goel, Vivek & Singer, Peter A. & Martin, Douglas K., 2006. "Leadership and priority setting: The perspective of hospital CEOs," Health Policy, Elsevier, vol. 79(1), pages 24-34, November.
    6. Smit, Anri & Coetzee, Bronwynè Jo’sean & Roomaney, Rizwana & Bradshaw, Melissa & Swartz, Leslie, 2019. "Women's stories of living with breast cancer: A systematic review and meta-synthesis of qualitative evidence," Social Science & Medicine, Elsevier, vol. 222(C), pages 231-245.
    7. Tenbensel, Tim & Cumming, Jacqueline & Ashton, Toni & Barnett, Pauline, 2008. "Where there's a will, is there a way?: Is New Zealand's publicly funded health sector able to steer towards population health?," Social Science & Medicine, Elsevier, vol. 67(7), pages 1143-1152, October.
    8. Bate, Angela & Donaldson, Cam & Murtagh, Madeleine J., 2007. "Managing to manage healthcare resources in the English NHS? What can health economics teach? What can health economics learn?," Health Policy, Elsevier, vol. 84(2-3), pages 249-261, December.
    9. Maluka, Stephen & Kamuzora, Peter & Sebastiån, Miguel San & Byskov, Jens & Olsen, Øystein E. & Shayo, Elizabeth & Ndawi, Benedict & Hurtig, Anna-Karin, 2010. "Decentralized health care priority-setting in Tanzania: Evaluating against the accountability for reasonableness framework," Social Science & Medicine, Elsevier, vol. 71(4), pages 751-759, August.
    10. Cornelissen, Evelyn & Mitton, Craig & Davidson, Alan & Reid, R. Colin & Hole, Rachelle & Visockas, Anne-Marie & Smith, Neale, 2014. "Changing priority setting practice: The role of implementation in practice change," Health Policy, Elsevier, vol. 117(2), pages 266-274.
    11. Rhodes, Tim & Ruiz Osorio, Maria Paula & Maldonado Martinez, Adriana & Restrepo Henao, Alexandra & Lancaster, Kari, 2024. "Exhausting care: On the collateral realities of caring in the early days of the Covid-19 pandemic," Social Science & Medicine, Elsevier, vol. 343(C).
    12. Lapum, Jennifer & Angus, Jan E. & Peter, Elizabeth & Watt-Watson, Judy, 2010. "Patients' narrative accounts of open-heart surgery and recovery: Authorial voice of technology," Social Science & Medicine, Elsevier, vol. 70(5), pages 754-762, March.
    13. Regier, Dean A. & Bentley, Colene & Mitton, Craig & Bryan, Stirling & Burgess, Michael M. & Chesney, Ellen & Coldman, Andy & Gibson, Jennifer & Hoch, Jeffrey & Rahman, Syed & Sabharwal, Mona & Sawka, , 2014. "Public engagement in priority-setting: Results from a pan-Canadian survey of decision-makers in cancer control," Social Science & Medicine, Elsevier, vol. 122(C), pages 130-139.
    14. Menon, Devidas & Stafinski, Tania & Martin, Douglas, 2007. "Priority-setting for healthcare: Who, how, and is it fair?," Health Policy, Elsevier, vol. 84(2-3), pages 220-233, December.
    15. Patten, San & Mitton, Craig & Donaldson, Cam, 2006. "Using participatory action research to build a priority setting process in a Canadian Regional Health Authority," Social Science & Medicine, Elsevier, vol. 63(5), pages 1121-1134, September.
    16. Eddama, Oya & Coast, Joanna, 2009. "Use of economic evaluation in local health care decision-making in England: A qualitative investigation," Health Policy, Elsevier, vol. 89(3), pages 261-270, March.
    17. Michael E. Otim & Augustine D. Asante & Margaret Kelaher & Ian P. Anderson & Stephen Jan, 2016. "Acceptability of programme budgeting and marginal analysis as a tool for routine priority setting in Indigenous health," International Journal of Health Planning and Management, Wiley Blackwell, vol. 31(3), pages 277-295, July.
    18. Hipgrave, David B. & Alderman, Katarzyna Bolsewicz & Anderson, Ian & Soto, Eliana Jimenez, 2014. "Health sector priority setting at meso-level in lower and middle income countries: Lessons learned, available options and suggested steps," Social Science & Medicine, Elsevier, vol. 102(C), pages 190-200.
    19. Waldram, James B. & Hatala, Andrew R., 2015. "Latent and manifest empiricism in Q'eqchi' Maya healing: A case study of HIV/AIDS," Social Science & Medicine, Elsevier, vol. 126(C), pages 9-16.
    20. Kapiriri, Lydia & Razavi, Donya, 2017. "How have systematic priority setting approaches influenced policy making? A synthesis of the current literature," Health Policy, Elsevier, vol. 121(9), pages 937-946.

    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:79:y:2013:i:c:p:76-83. 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.