Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"

Introduction: Caregivers provide care for relatives with Alzheimer’s disease at an emotional and physical cost to themselves. Language and cultural factors influence how caregivers are impacted by their role, yet the role that culture and language play on a person’s perception of caregiving has not...

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Main Author: Lyda Arevalo-flechas
Format: Article
Language:English
Published: University of Health Sciences 2019-08-01
Series:Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi
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Online Access:https://dergipark.org.tr/tr/download/article-file/790168
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author Lyda Arevalo-flechas
author_facet Lyda Arevalo-flechas
author_sort Lyda Arevalo-flechas
collection DOAJ
description Introduction: Caregivers provide care for relatives with Alzheimer’s disease at an emotional and physical cost to themselves. Language and cultural factors influence how caregivers are impacted by their role, yet the role that culture and language play on a person’s perception of caregiving has not been adequately explored. Not having a Spanish equivalent for the expression “caregiver burden.” raises concern when this concept is translated to the wordcargaand used to describe Latino caregiving.Aim:To describe the perceptions of the caregiving experience of bilingual Latino/Hispanic family caregivers of relatives living with Alzheimer’s disease, and explore the language used in their narratives.Method:Data collection and analyses followed a modified Spradley ethnographic methodology. Semi-structured interviews were conducted, and prolonged participant observation and artifacts provided rich data.Results:All caregivers described their experience as difficult, but not as a burden or carga. Caregiving was described as an honorable opportunity to accomplish two culturally prescribed goals: caregiver satisfaction, and caregiver duty fulfillment. Three overarching themes were elucidated: caregiving has consequences, caregiving fulfills a duty, and caregiving is satisfying. The main consequences were: caregiving is physically challenging, caregiving is emotionally draining, and caregiving is financially detrimental. Caregiving fulfills a duty had two main components: Caregiving is my duty, and caregiving is learned. Caregiving is satisfying had three components: Caregiving is my opportunity to give back, knowing that I am doing my best, and a sacrifice.Conclusion:Data support the formulation of a conceptual orientation of the Latino caregiving experience.
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spelling doaj-art-8c011a26015343b9a31201ba9e11d2a82025-02-05T09:11:41ZengUniversity of Health SciencesSağlık Bilimleri Üniversitesi Hemşirelik Dergisi2667-83572019-08-0112921031852Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"Lyda Arevalo-flechas0https://orcid.org/0000-0002-1580-3805South Texas Veterans Health Care SystemIntroduction: Caregivers provide care for relatives with Alzheimer’s disease at an emotional and physical cost to themselves. Language and cultural factors influence how caregivers are impacted by their role, yet the role that culture and language play on a person’s perception of caregiving has not been adequately explored. Not having a Spanish equivalent for the expression “caregiver burden.” raises concern when this concept is translated to the wordcargaand used to describe Latino caregiving.Aim:To describe the perceptions of the caregiving experience of bilingual Latino/Hispanic family caregivers of relatives living with Alzheimer’s disease, and explore the language used in their narratives.Method:Data collection and analyses followed a modified Spradley ethnographic methodology. Semi-structured interviews were conducted, and prolonged participant observation and artifacts provided rich data.Results:All caregivers described their experience as difficult, but not as a burden or carga. Caregiving was described as an honorable opportunity to accomplish two culturally prescribed goals: caregiver satisfaction, and caregiver duty fulfillment. Three overarching themes were elucidated: caregiving has consequences, caregiving fulfills a duty, and caregiving is satisfying. The main consequences were: caregiving is physically challenging, caregiving is emotionally draining, and caregiving is financially detrimental. Caregiving fulfills a duty had two main components: Caregiving is my duty, and caregiving is learned. Caregiving is satisfying had three components: Caregiving is my opportunity to give back, knowing that I am doing my best, and a sacrifice.Conclusion:Data support the formulation of a conceptual orientation of the Latino caregiving experience.https://dergipark.org.tr/tr/download/article-file/790168alzheimercaregivingethnomethodologylatinoalzheimerbakım vermeetnometodoloji
spellingShingle Lyda Arevalo-flechas
Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"
Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi
alzheimer
caregiving
ethnomethodology
latino
alzheimer
bakım verme
etnometodoloji
title Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"
title_full Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"
title_fullStr Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"
title_full_unstemmed Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"
title_short Latino Alzheimer's Caregiving: Neither a Burden nor a "Carga"
title_sort latino alzheimer s caregiving neither a burden nor a carga
topic alzheimer
caregiving
ethnomethodology
latino
alzheimer
bakım verme
etnometodoloji
url https://dergipark.org.tr/tr/download/article-file/790168
work_keys_str_mv AT lydaarevaloflechas latinoalzheimerscaregivingneitheraburdennoracarga