The experiences of bereaved family caregivers with advance care planning for children with medical complexity

Title

The experiences of bereaved family caregivers with advance care planning for children with medical complexity

Creator

Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J

Publisher

Paediatrics and Child Health (Canada)

Date

2019

Subject

death; child; female; human; male; genetic transcription; clinical article; health care personnel; advance care planning; conference abstract; caregiver; human tissue; consultation; perception; semi structured interview; content analysis; conversation; informed consent; personal experience

Description

BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as "the process of discussing life-sustaining treatments and establishing long-term care goals." Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver's views. Bereaved caregivers have the unique ability to reflect upon ACP through their child's whole disease course and end of life experience. OBJECTIVE(S): To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child's death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers' experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULT(S): 13 bereaved caregivers of CMC completed 12 interviews ranging from 40-80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver's feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION(S): Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

October 2019 List

Collection

Citation

Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J, “The experiences of bereaved family caregivers with advance care planning for children with medical complexity,” Pediatric Palliative Care Library, accessed July 27, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16513.

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