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

JAMA Netw Open. 2020 Jul 1;3(7):e2010337. doi: 10.1001/jamanetworkopen.2020.10337.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Advance Care Planning* / standards
  • Bereavement*
  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Female
  • Humans
  • Infant
  • Interviews as Topic
  • Male
  • Multimorbidity*
  • Parents / psychology*
  • Terminal Care / psychology
  • Terminal Care / standards