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

Yıl 2019, Cilt: 1 Sayı: 2, 92 - 103, 20.08.2019

Lyda Arevalo-flechas

Öz

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 word carga and 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.

Anahtar Kelimeler

Alzheimer, caregiving, ethnomethodology, Latino

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

Öz

Giriş: Alzheimer hastalığı olan akrabalarına bakım verenlerin verdikleri bu bakım, kendileri için duygusal ve fiziksel bir maliyet doğurur. Bakım verenlerin rollerinden nasıl etkilendiklerini belirlemede dil ve kültürel faktörler önemlidir, ancak kültür ve dilin bir kişinin bakım algısı üzerinde oynadığı rol yeterince araştırılmamıştır. “Bakım/Bakım veren yükü” ifadesinin İspanyolca birebir karşılığı bulunmamaktadır. Bununla birlikte Latin toplumu için bu kavramı tanımlamada giderek daha fazla carga kelimesinin kullanılması endişe uyandırmaktadır.

Amaç: Alzheimer hastalığı olan yakınlarına bakım veren Latino/Hispanik aile bakıcılarının bakıcılık deneyimine ilişkin algılarını tanımlamak ve anlatılarında kullanılan dili araştırmak.

Yöntem: Kalitatif bir araştırmadır. Veri toplama ve analizinde değiştirilmiş bir Spradley etnografik metodolojisi takip edilmiştir. Yarı yapılandırılmış görüşmeler gerçekleştirilmiş ve katılımcılar uzun süreli gözlenerek zengin veriler sağlanmıştır.

Bulgular: Tüm bakım verenler deneyimlerinin zor olduğunu ifade etmiş, ancak yük ya da carga olarak tanımlamamışlardır. Bakım verme, kültürel olarak bakıcı memnuniyeti ve bakıcı görevinin yerine getirilmesi şeklinde belirlenmiş iki hedefe ulaşmada onurlu bir fırsat olarak tanımlanmıştır. Bakımın sonuçları vardır, bakım verme ile bir görev yerine getirilir ve bakım verme tatmin edicidir şeklinde üç ana tema ortaya çıkmıştır. Bakımın sonuçları temasında bakım, fiziksel olarak zordur, bakım, duygusal olarak tüketir ve bakım, maddi olarak külfetlidir; bakım verme ile bir görev yerine getirilir temasında, bakım verme benim görevimdir ve bakım verme öğrenilir ve son olarak bakım verme tatmin edicidir ana temasında, elimden gelenin en iyisini yaptığımı bilerek geri verme fırsatım ve bir fedakarlıktır ifadeleri vurgulanmıştır.

Sonuç: Bulgular, Latino kültüründe bakım deneyiminin kavramsal yöneliminin formülasyonunu desteklemektedir.

Anahtar Kelimeler

Alzheimer, bakım verme, etnometodoloji

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