“El sueño de todos”: A Qualitative Study of Family/Caregiver Experience after an Acute Neurological Event in Argentina

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Date

2017

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Prvu Bettger, Janet

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Abstract

The family of patients hospitalized in an intensive care unit (ICU) after a neurological event often immediately assume the role of caregiver to an individual with significant health care needs. Family/caregivers act as patient advocates and members of the care team, yet their experiences accompanying neurocritical care patients in Argentina and assuming the caregiving role are not well understood. The purpose of this study is to investigate the experiences of family members/caregivers during the time in which they assume the caregiving role as a means to better understand the relationship between patient, family/caregiver, provider, and health system in the ICU to potentially inform the development of appropriate interventions.

This study explores the use of Bronfenbrenner’s Ecological Systems Theory to ethnographically investigate the perceptions and attitudes of family/caregivers regarding their experience and relationships and interactions between patient, family, provider, and health system after an acute neurological event in Argentina. Study implementation occurred over the course of eleven weeks and included direct observation and semi-structured interviews. The initial two-week direct observation period was used to determine study feasibility and provide contextual understanding. Family/caregiver experience was investigated using 9 qualitative, semi-structured interviews with family/caregivers. Participants were selected using purposive sampling of family/caregivers of patients in a hospital ICU. Family/caregivers were unpaid family members, at least 18 years of age, and self-identified or elected by the family to speak on behalf of the family for the patient admitted to the ICU for an acute neurological event. Direct observation continued throughout the nine weeks of participant identification and interviewing after the initial two-week period to aid the investigator’s comprehensive understanding of patient and family/caregiver experience. Interviews were transcribed verbatim and translated line-by-line from Spanish to English. Iterative thematic analysis using a grounded theory approach was used to code and analyze interview transcripts. Thick description and comparison and categorization of themes were used to identify, explain, and verify patterns and develop broad themes.

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 trato humano, and finding unity in purpose. Patients, family/caregivers, and medical providers often interact in the ICU. While patients rely upon both providers and family/caregivers for care, family/caregivers also rely upon providers to explain prognosis and next steps, including plans for rehabilitation. Medical providers have the power to affect patient and family/caregiver experience through more than just medical care – family/caregivers perceive and place importance on interactions with providers.

Family members/caregivers form an integral part of the care team. The centrality of the patient to both family/caregiver and provider unites these two groups and emphasizes the need for recognition of the role that family/caregivers play in patient experience as a mediator between provider and patient. Exploration of family/caregiver experience can help improve patient- and family-centered care and mitigate disability and other negative health outcomes through deeper understanding of the needs and concerns of family/caregivers as they support the patient across the care continuum.

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Citation

Roberts, Michelle (2017). “El sueño de todos”: A Qualitative Study of Family/Caregiver Experience after an Acute Neurological Event in Argentina. Master's thesis, Duke University. Retrieved from https://hdl.handle.net/10161/15281.

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