"This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy.

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  • Additional Information
    • Affiliation:
      Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children's Hospital, Boston, Massachusetts
      Harvard Medical School, Boston, Massachusetts
      Retired from Boston Children's Hospital, Boston, Massachusetts
      Boston Children's Hospital Simulator Program, Boston Children's Hospital, Boston, Massachusetts
      Child Life Services, Boston Children's Hospital, Boston, Massachusetts
      Department of Pediatrics, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Tufts University School of Medicine, Boston, Massachusetts
      Center for Medical Simulation, Charlestown, Massachusetts
    • Abstract:
      Rationale: Expansion of chronic ventilation options and shared decision-making have contributed to an increasing population of technology-dependent children. One particularly vulnerable group is children with tracheostomy who depend on technology for basic respiratory functions. Chronic critical care is now provided in the homecare setting with implications for family caregivers.Objectives: This study explores the experience of family caregivers of children and young adults with a tracheostomy during the transition from hospital to home care. We sought to identify the specific unmet needs of families to direct future interventions.Methods: We recruited a convenience sample of families from an established home ventilation program to participate in semistructured interviews. Sessions were conducted in person or via teleconference. A grounded-theory qualitative analysis was performed.Results: Between March 2017 and October 2018, we interviewed 13 individuals representing 12 families of children and/or young adults with tracheostomy. Patients ranged in age from 9 months to 28 years, had a tracheostomy for 8 months to 18 years, and represented a variety of underlying diagnoses. Five key themes emerged: 1) navigating home nursing; 2) care coordination and durable medical equipment (DME) impediments; 3) learning as a process; 4) managing emergencies; and 5) setting expectations.Conclusions: Our findings support the need for family-centered discharge processes including coordination of care and teaching focused on emergency preparedness.
    • Journal Subset:
      Biomedical; Peer Reviewed; USA
    • ISSN:
      2325-6621
    • MEDLINE Info:
      PMID: NLM32267725 NLM UID: 101600811
    • Grant Information:
      T32 HS000063/HS/AHRQ HHS/United States
    • Publication Date:
      In Process
    • Publication Date:
      20200709
    • DOI:
      http://dx.doi.org/10.1513/AnnalsATS.201910-780OC
    • Accession Number:
      144362429
  • Citations
    • ABNT:
      AMAR-DOLAN, L. G. et al. “This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy. Annals of the American Thoracic Society, [s. l.], v. 17, n. 7, p. 860–868, 2020. DOI 10.1513/AnnalsATS.201910-780OC. Disponível em: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=rzh&AN=144362429. Acesso em: 10 ago. 2020.
    • AMA:
      Amar-Dolan LG, Horn MH, O’Connell B, et al. “This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy. Annals of the American Thoracic Society. 2020;17(7):860-868. doi:10.1513/AnnalsATS.201910-780OC
    • APA:
      Amar-Dolan, L. G., Horn, M. H., O’Connell, B., Parsons, S. K., Roussin, C. J., Weinstock, P. H., & Graham, R. J. (2020). “This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy. Annals of the American Thoracic Society, 17(7), 860–868. https://doi.org/10.1513/AnnalsATS.201910-780OC
    • Chicago/Turabian: Author-Date:
      Amar-Dolan, Laura G., Mary H. Horn, Brianna O’Connell, Susan K. Parsons, Christopher J. Roussin, Peter H. Weinstock, and Robert J. Graham. 2020. “‘This Is How Hard It Is’. Family Experience of Hospital-to-Home Transition with a Tracheostomy.” Annals of the American Thoracic Society 17 (7): 860–68. doi:10.1513/AnnalsATS.201910-780OC.
    • Harvard:
      Amar-Dolan, L. G. et al. (2020) ‘“This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy’, Annals of the American Thoracic Society, 17(7), pp. 860–868. doi: 10.1513/AnnalsATS.201910-780OC.
    • Harvard: Australian:
      Amar-Dolan, LG, Horn, MH, O’Connell, B, Parsons, SK, Roussin, CJ, Weinstock, PH & Graham, RJ 2020, ‘“This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy’, Annals of the American Thoracic Society, vol. 17, no. 7, pp. 860–868, viewed 10 August 2020, .
    • MLA:
      Amar-Dolan, Laura G., et al. “‘This Is How Hard It Is’. Family Experience of Hospital-to-Home Transition with a Tracheostomy.” Annals of the American Thoracic Society, vol. 17, no. 7, July 2020, pp. 860–868. EBSCOhost, doi:10.1513/AnnalsATS.201910-780OC.
    • Chicago/Turabian: Humanities:
      Amar-Dolan, Laura G., Mary H. Horn, Brianna O’Connell, Susan K. Parsons, Christopher J. Roussin, Peter H. Weinstock, and Robert J. Graham. “‘This Is How Hard It Is’. Family Experience of Hospital-to-Home Transition with a Tracheostomy.” Annals of the American Thoracic Society 17, no. 7 (July 2020): 860–68. doi:10.1513/AnnalsATS.201910-780OC.
    • Vancouver/ICMJE:
      Amar-Dolan LG, Horn MH, O’Connell B, Parsons SK, Roussin CJ, Weinstock PH, et al. “This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy. Annals of the American Thoracic Society [Internet]. 2020 Jul [cited 2020 Aug 10];17(7):860–8. Available from: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=rzh&AN=144362429