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Experiences of Family Caregivers After an Acute Neurological Event

Abstract

Background

Family of patients hospitalized in an intensive care unit (ICU) often immediately assume the role of caregiver to an individual with significant health care needs. The transition into this caregiver role may be sudden and unexpected; their experiences are not well understood. The purpose of this qualitative study was to explore experiences of family caregivers in the neurocritical care unit in order to identify areas for enhancing patient- and family-centered care.

Methods

This single-center ethnographic study explored the use of systems theory to investigate the perceptions, experiences, and attitudes of family/caregivers regarding their relationships and interactions between the patient, other family, members of the healthcare provider team, and health system after an acute neurological event in Argentina. Field notes from 9 weeks of direct observation together with transcripts from nine semi-structured interviews (transcribed verbatim and translated from Spanish to English) were analyzed using a grounded theory approach.

Results

Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el tratohumano, and finding unity in purpose. In the neurocritical care environment, an important intermediary role exists for family/caregivers and the patient, other family, and healthcare providers.

Conclusions

The results demonstrate the potential for family, providers, and the health system to influence family/caregivers’ experience with neurocritical care. Involving families as part of the care team could have implications for patient- and family-centered care.

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Funding

This study was supported by funds from the Duke Global Health Institute at Duke University (Durham, North Carolina, United States).

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Authors and Affiliations

Authors

Contributions

MKR, JPB: Conceptualization, design, acquisition, analysis, and interpretation of data; drafting the article; final approval. KS: design, analysis, and interpretation of data; drafting the article; final approval. NMT, ESR: design, acquisition, and interpretation of data; critically revising the article for intellectual content; final approval. GH: analysis and interpretation of data; drafting the article; final approval. FG: design, acquisition, analysis, and interpretation of data; drafting the article; final approval.

Corresponding author

Correspondence to Janet Prvu Bettger.

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Conflict of interest

Ms. Roberts, Dr. Stewart, Ms. Tessore, Dr. San Roman, Ms. Harris, and Drs. Goldenberg and Prvu Bettger have nothing to disclose.

Ethical Approval

This study was approved by hospital’s Comité de Ética y Protocolos de Investigación (Committee of Ethics and Investigative Protocols) and also the Institutional Review Board from the partnering academic institution in the United States. Family members who participated in interviews provided written informed consent.

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Roberts, M.K., Stewart, K.A., Tessore, N.M. et al. Experiences of Family Caregivers After an Acute Neurological Event. Neurocrit Care 34, 45–53 (2021). https://doi.org/10.1007/s12028-020-00973-9

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  • DOI: https://doi.org/10.1007/s12028-020-00973-9

Keywords

  • Caregivers
  • Critical care
  • Neurology
  • Qualitative research