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    Original Investigation
    July 28, 2020

    Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

    Author Affiliations
    • 1Division of Paediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
    • 2Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada
    • 3Child Health Evaluative Sciences, SickKids Research Institute, Toronto, Ontario, Canada
    • 4Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Ontario, Canada
    • 5Emily’s House Children’s Hospice, Toronto, Ontario, Canada
    JAMA Netw Open. 2020;3(7):e2010337. doi:10.1001/jamanetworkopen.2020.10337
    Key Points español 中文 (chinese)

    Question  How do bereaved family caregivers describe their experiences with advance care planning for children with medical complexity?

    Findings  In this qualitative study that included 13 parents of children with medical complexity, participants emphasized the importance of involving trusted health care professionals and incorporating parental expertise to guide advance care planning. The relative shock parents experienced regarding the timing of the child’s death, despite recurrent experiences with life-threatening events, and the multiple losses they experienced when the child with a large health care team died were important themes.

    Meaning  The perspectives of bereaved parents in this study revealed important themes that should be considered for future study of advance care planning for children with medical complexity.


    Importance  Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC.

    Objective  To explore the experiences of bereaved family caregivers with ACP for CMC.

    Design, Setting, and Participants  This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used.

    Exposures  Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached.

    Main Outcomes and Measures  Transcripts were analyzed to create themes that characterized caregiver experiences with ACP.

    Results  A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child’s care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced.

    Conclusions and Relevance  In this study, parental experiences revealed that there are key aspects of the structure of the child’s care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.