Document Type

Article

Publication Date

1-18-2021

Journal

Brain injury

Volume

35

Issue

2

First Page

200

Last Page

208

URL with Digital Object Identifier

DOI: 10.1080/02699052.2020.1865565

Abstract

Objective: To understand the multiple and sometimes conflicting roles substitute decision makers (SDMs) of individuals in a vegetative state (VS), minimally conscious state (MCS), or with locked-in syndrome (LIS) perform while caring for a loved one and the competing priorities derived from these roles.Methods: We conducted semi-structured qualitative interviews using a constructive-grounded theory design. Twelve SDMs, who were also family members for 11 patients, were interviewed at two time points (except one) for a total of 21 in-depth interviews.Results: Participants described that caregiving is often the central role which they identify as their top priority and around which they coordinate and to some extent subordinate their other roles. In addition to caregiving, they participated in a wide variety of roles, which were sometimes in conflict, as they became caregivers for a loved one with chronic and complex needs. SDMs described the caregiver role as complex and intense that lead to physical, emotional, social, and economic burdens.Conclusion: SDMs report high levels of burdens in caring for a person with a prolonged disorder of consciousness. Lack of health system support that recognized the broader context of SDMs lives, including their multiple competing priorities, was a major contributing factor.

Notes

The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness, Brain Injury

https://www.tandfonline.com/doi/abs/10.1080/02699052.2020.1865565?journalCode=ibij20

Citation of this paper:

Laura E. Gonzalez-Lara, Sarah Munce, Jennifer Christian, Adrian M. Owen, Charles Weijer & Fiona Webster (2021) The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness, Brain Injury, 35:2, 200-208, DOI: 10.1080/02699052.2020.1865565

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