• Pediatr Crit Care Me · Jul 2021

    Clinical Care Strategies That Support Parents of Children With Complex Chronic Conditions.

    • Jori F Bogetz, Anna Revette, and Danielle D DeCourcey.
    • Division of Bioethics and Palliative Care, Department of Pediatric, University of Washington, Seattle, WA.
    • Pediatr Crit Care Me. 2021 Jul 1; 22 (7): 595602595-602.

    ObjectivesChildren with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate supportive clinical care strategies identified by bereaved parents of children with complex chronic conditions.DesignQualitative analysis of 21 open-response items from the cross-sectional "Survey of Caring for Children with Complex Chronic Conditions" querying communication, decision-making, and end-of-life experiences.SettingLarge tertiary care children's hospital.PatientsParents of children with complex chronic conditions who received care at a large academic institution and died between 2006 and 2015.InterventionsNone.Measurements And Main ResultsAn iterative multistage thematic analysis of responses was used to identify key themes pertaining to clinical care strategies that support parents of children with complex chronic conditions. Open-ended responses were analyzed from 110 of 114 (96%) of survey respondents. The majority of parents had children with congenital/chromosomal complex chronic conditions who died 3.9 years (interquartile range, 2.2-6.7 yr) prior to their parents' study participation. Although informational themes related to clear honest communication, consistent messaging, and enhanced care coordination were identified, parents emphasized the relational aspects of clinical care including inclusivity of their expertise about their child's needs, recognition of their unique experience as parents, and maintenance of connection with clinicians through bereavement.ConclusionsClinical care strategies that support parents of children with complex chronic conditions reflect the unique needs of this group of children. Relational strategies such as including parents as experts in their child's care were paramount to parents of children with complex chronic conditions throughout their child's medical journey and at end of life.Copyright © 2021 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

      Pubmed     Full text   Copy Citation     Plaintext  

      Add institutional full text...

    Notes

     
    Knowledge, pearl, summary or comment to share?
    300 characters remaining
    help        
    You can also include formatting, links, images and footnotes in your notes
    • Simple formatting can be added to notes, such as *italics*, _underline_ or **bold**.
    • Superscript can be denoted by <sup>text</sup> and subscript <sub>text</sub>.
    • Numbered or bulleted lists can be created using either numbered lines 1. 2. 3., hyphens - or asterisks *.
    • Links can be included with: [my link to pubmed](http://pubmed.com)
    • Images can be included with: ![alt text](https://bestmedicaljournal.com/study_graph.jpg "Image Title Text")
    • For footnotes use [^1](This is a footnote.) inline.
    • Or use an inline reference [^1] to refer to a longer footnote elseweher in the document [^1]: This is a long footnote..

    hide…