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

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

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.


Kaynakça

  • Acton, G. J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for an adult with dementia: A meta-analysis. Research in Nursing & Health, 24(5), 349-360.
  • Alzheimer’s Association. (2004). Hispanics/Latinos and Alzheimer’s disease. Author.
  • Alzheimer’s Association, (2018). 2018 Alzheimer’s disease facts and figures. Alzheimer’s and Dementia 2018; 14 (3):367-429 Retrieved from https://www.alz.org/media/HomeOffice/Facts%20and%20Figures/facts-and-figures.pdf
  • Alzheimer’s Association and National Alliance for Caregiving. (2004). Families care: Alzheimer’s caregiving in the United States. Retrieved from http://www. alz.org/documents/national/Caregiverreport.pdf
  • Alzheimer’s Disease International. (2009). World Alzheimer’s Report 2009. Retrieved from https://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf
  • Alzheimer’s Disease International. (2018). World Alzheimer Report 2018 - The state of the art of dementia research: New frontiers. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2018.pdf
  • Aranda, M. P., & Knight, B. G. (1997). The influence of ethnicity and culture on the caregiver stress and coping process: A sociocultural review and analysis. The Gerontologist, 37(2), 342-354.
  • Arévalo-Flechas, L. C (2008). Factors influencing Latino/Hispanic caregivers' perception of the experience of caring for a relative with Alzheimer's disease. Dissertation Abstracts International (UMI 3311328). Retrieved from http://gradworks.umi.com/3311328.pdf
  • Arévalo, L. C., & Lewis, S. (2006). Lost in translation: What does burden mean to Latino Alzheimer's caregivers? Journal of the American Geriatrics Society, 54(4), S177.
  • Ayalon, L., Huyck, M.H., (2002), Latino caregivers of relatives with Alzheimer’s disease. WCLI, 24 (3), 93–106.
  • Baker, F. M. (2006). Ethnic elders and caregiving. In S. M. LoboPrabhu, V. A. Molinari, & J. W. Lomax (Eds.), Caregiver in dementia: A guide for healthcare professionals. Baltimore: The Johns Hopkins University Press.
  • Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice Hall.
  • Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice Hall.
  • Calderon-Rosado, V., & Tennstedt, S. (1998). Ethnic differences in the expression of caregiver burden: Results of a qualitative study. Journal of Gerontological Social Work, 30, 159-178.
  • Chou, K.-R., Chyun, L., & Chu, H. (2002). The reliability and validity of the Chinese version of the Caregiver Burden Inventory. Nursing Research, 51(5), 324-331.
  • Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist, 37(3), 355-364.
  • Cox, C., & Monk, A. (1990). Minority caregivers of dementia victims: A comparison of Black and Hispanic Families. Journal of Applied Gerontology, 9(3), 340-354.
  • Cox, C., & Monk, A. (1996). Strain among caregivers: Comparing the experiences of African-American and Hispanic caregivers of Alzheimer's relatives. International Journal Aging and Human Development, 43(2), 93-105.
  • Dilworth-Anderson, P., Williams, I. C., & Gibson, B. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20- year review (1980-2000.). The Gerontologist, 42(2), 237-272.
  • Freeberg, A., & Stein, C. H. (1996). Felt obligation towards parents in Mexican-American and Anglo-American young adults. Journal of Social and Personal Relationships, 13(3), 457- 471.
  • Gallagher-Thompson, D., Solano, N., Coon, D., & Arean, P. (2003). Recruitment and retention of Latino dementia caregivers in intervention research: Issues to face, lessons to learn. The Gerontologist, 43(1), 45-51.
  • Hampson, R., Beavers, W. R., & Hulgus Y. (1990). Cross-ethnic family differences: Interactional Assessment of White, Black, and Mexican-American families. Journal of Marital and Family Therapy, 16, 307-319.
  • John, R., & McMillian, B. (1998). Exploring caregiver burden among Mexican-Americans: Cultural prescriptions, family dilemmas. Journal of Aging and Ethnicity, 1, 93-111.
  • Jolicoeur, P. M., & Madden, T. (2002). The good daughters: Acculturation and caregiving among Mexican-American women. Journal of Aging Studies, 16, 107-120.
  • Keefe, S. E., & Padilla, A. (1987). Chicano ethnicity. Albuquerque, NM: University of New Mexico Press.
  • Lee, H., & Cameron, M. (2005). Respite care for people with dementia and their carers [Systematic Review]. Cochrane Database of Systematic Reviews, 3, 3.
  • Losada, A., Marquez-Gonzalez, M., Peñacoba, C., Gallagher-Thompson, D., & Knight, B. (2007). Reflexiones en torno a la atención a los cuidadores informales de personas con demencia y propuesta de una intervención interdisciplinar: Psicología Conductual, 15(1), 57-75.
  • Mintzer, J. E., Rubert, M. P., Loewenstein, D., Gamez, E., Millor, A., Quinteros, R., et al. (1992). Daughters caregiving for Hispanic and non-Hispanic Alzheimer patients: Does ethnicity make a difference? Community Mental Health Journal, 28(4), 293-303.
  • Murphy, M. R. (2005). Positive aspects of family caregiving of patients with Alzheimer's disease: A qualitative study. Unpublished doctoral dissertation. Our Lady of the Lake University.
  • National Alliance for Hispanic Health. (2001). Quality health services for Hispanics: The cultural competency component. DHHS Publication No. 99-21.
  • National Alliance for Caregiving & American Association of Retired Persons. (2004). Caregiving in the U.S. Authors.
  • National Alliance for Caregiving & Evercare. (2008). Evercare study of Hispanic family caregiving in the U.S. Findings from a national study. Retrieved from http://www.caregiving.org/data/Hispanic_Caregiver_Study_web_ENG_FINAL_11_04_08.pdf
  • Llanque, S.M., & Enríquez, M. (2012). Interventions for Hispanic Caregivers of Patients with Dementia : A Review of the Literature. American Journal of Alzheimer’s Disease and Other Dementias (27)1, 23-32.
  • Ory, M., Yee, J., Tennstedt, S., & Schulz, R. (2000). The extend and impact of dementia care: Unique challenges experienced by family caregivers. In R. Schulz (Ed.) Handbook on dementia caregiving (pp.1-32). New York: Springer.
  • Roth, D., Burgio, L., Gitlin, L., Gallagher-Thompson, D., Coon, D., Belle, S. H., et al. (2003). Psychometric analysis of the Revised Memory and Behavior Problems Checklist: A factor structure of occurrence and reaction ratings. Psychology & Aging, 18(4), 906-915.
  • Rymer, S., Salloway, S., Norton, L., Malloy, P., Correia, S., & Monast, D. (2002). Impaired awareness, behavior disturbance, and caregiver burden in Alzheimer disease. Alzheimer Disease & Associated Disorders,16(4):248-253.
  • Sabogal, F., Marin, G., Otero-Sabogal, R., Marin, B., & Perez-Stable, E. (1987). Hispanic familismo and acculturation: What changes and what doesn't. Hispanic Journal Behavioral Sciences, 9, 397-412.
  • Spradley, J. P. (1979). The ethnographic interview. New York: Holt, Rinehart and Winston.
  • Talamantes, M. A., & Aranda, M. P. (2004). Cultural competency in working with family caregivers. San Francisco: Family Caregiving Alliance.
  • Talamantes, M. A., Trejo, L., Jiménez, D., & Gallagher-Thompson, D. (2006). Working with Mexican-American families. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the dementias (2nd ed., pp. 327-340). New York: Routledge Taylor & Francis Group.
  • Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P. (1992). Assessment of behavioral problems in dementia: The Revised Memory and Behavior Problems Checklist. Psychology & Aging, 7, 622-631.
  • Vitaliano, P. P., Young, H. M., & Russo, J. (1991). Burden: A review of measures used among caregivers of individuals with dementia. Gerontologist, 31(1), 67-75.
  • Wortmann M. (2012). Dementia: a global health priority - highlights from an ADI and World Health Organization report. Alzheimer's research & therapy, 4(5), 40.
  • Zarit, S., Reever, K., & Bach-Peterson, J. (1987). A comparison of Black and white dementia family caregivers and noncaregivers. Psychology and Aging, 10, 540-552.
  • Zarit, S., & Zarit, J. (1982). Families under stress: Interventions for caregivers of senile dementia patients. Psychotherapy: Theory, Research and Practice, 19(4), 461-471.

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

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

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.

Kaynakça

  • Acton, G. J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for an adult with dementia: A meta-analysis. Research in Nursing & Health, 24(5), 349-360.
  • Alzheimer’s Association. (2004). Hispanics/Latinos and Alzheimer’s disease. Author.
  • Alzheimer’s Association, (2018). 2018 Alzheimer’s disease facts and figures. Alzheimer’s and Dementia 2018; 14 (3):367-429 Retrieved from https://www.alz.org/media/HomeOffice/Facts%20and%20Figures/facts-and-figures.pdf
  • Alzheimer’s Association and National Alliance for Caregiving. (2004). Families care: Alzheimer’s caregiving in the United States. Retrieved from http://www. alz.org/documents/national/Caregiverreport.pdf
  • Alzheimer’s Disease International. (2009). World Alzheimer’s Report 2009. Retrieved from https://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf
  • Alzheimer’s Disease International. (2018). World Alzheimer Report 2018 - The state of the art of dementia research: New frontiers. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2018.pdf
  • Aranda, M. P., & Knight, B. G. (1997). The influence of ethnicity and culture on the caregiver stress and coping process: A sociocultural review and analysis. The Gerontologist, 37(2), 342-354.
  • Arévalo-Flechas, L. C (2008). Factors influencing Latino/Hispanic caregivers' perception of the experience of caring for a relative with Alzheimer's disease. Dissertation Abstracts International (UMI 3311328). Retrieved from http://gradworks.umi.com/3311328.pdf
  • Arévalo, L. C., & Lewis, S. (2006). Lost in translation: What does burden mean to Latino Alzheimer's caregivers? Journal of the American Geriatrics Society, 54(4), S177.
  • Ayalon, L., Huyck, M.H., (2002), Latino caregivers of relatives with Alzheimer’s disease. WCLI, 24 (3), 93–106.
  • Baker, F. M. (2006). Ethnic elders and caregiving. In S. M. LoboPrabhu, V. A. Molinari, & J. W. Lomax (Eds.), Caregiver in dementia: A guide for healthcare professionals. Baltimore: The Johns Hopkins University Press.
  • Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice Hall.
  • Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice Hall.
  • Calderon-Rosado, V., & Tennstedt, S. (1998). Ethnic differences in the expression of caregiver burden: Results of a qualitative study. Journal of Gerontological Social Work, 30, 159-178.
  • Chou, K.-R., Chyun, L., & Chu, H. (2002). The reliability and validity of the Chinese version of the Caregiver Burden Inventory. Nursing Research, 51(5), 324-331.
  • Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist, 37(3), 355-364.
  • Cox, C., & Monk, A. (1990). Minority caregivers of dementia victims: A comparison of Black and Hispanic Families. Journal of Applied Gerontology, 9(3), 340-354.
  • Cox, C., & Monk, A. (1996). Strain among caregivers: Comparing the experiences of African-American and Hispanic caregivers of Alzheimer's relatives. International Journal Aging and Human Development, 43(2), 93-105.
  • Dilworth-Anderson, P., Williams, I. C., & Gibson, B. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20- year review (1980-2000.). The Gerontologist, 42(2), 237-272.
  • Freeberg, A., & Stein, C. H. (1996). Felt obligation towards parents in Mexican-American and Anglo-American young adults. Journal of Social and Personal Relationships, 13(3), 457- 471.
  • Gallagher-Thompson, D., Solano, N., Coon, D., & Arean, P. (2003). Recruitment and retention of Latino dementia caregivers in intervention research: Issues to face, lessons to learn. The Gerontologist, 43(1), 45-51.
  • Hampson, R., Beavers, W. R., & Hulgus Y. (1990). Cross-ethnic family differences: Interactional Assessment of White, Black, and Mexican-American families. Journal of Marital and Family Therapy, 16, 307-319.
  • John, R., & McMillian, B. (1998). Exploring caregiver burden among Mexican-Americans: Cultural prescriptions, family dilemmas. Journal of Aging and Ethnicity, 1, 93-111.
  • Jolicoeur, P. M., & Madden, T. (2002). The good daughters: Acculturation and caregiving among Mexican-American women. Journal of Aging Studies, 16, 107-120.
  • Keefe, S. E., & Padilla, A. (1987). Chicano ethnicity. Albuquerque, NM: University of New Mexico Press.
  • Lee, H., & Cameron, M. (2005). Respite care for people with dementia and their carers [Systematic Review]. Cochrane Database of Systematic Reviews, 3, 3.
  • Losada, A., Marquez-Gonzalez, M., Peñacoba, C., Gallagher-Thompson, D., & Knight, B. (2007). Reflexiones en torno a la atención a los cuidadores informales de personas con demencia y propuesta de una intervención interdisciplinar: Psicología Conductual, 15(1), 57-75.
  • Mintzer, J. E., Rubert, M. P., Loewenstein, D., Gamez, E., Millor, A., Quinteros, R., et al. (1992). Daughters caregiving for Hispanic and non-Hispanic Alzheimer patients: Does ethnicity make a difference? Community Mental Health Journal, 28(4), 293-303.
  • Murphy, M. R. (2005). Positive aspects of family caregiving of patients with Alzheimer's disease: A qualitative study. Unpublished doctoral dissertation. Our Lady of the Lake University.
  • National Alliance for Hispanic Health. (2001). Quality health services for Hispanics: The cultural competency component. DHHS Publication No. 99-21.
  • National Alliance for Caregiving & American Association of Retired Persons. (2004). Caregiving in the U.S. Authors.
  • National Alliance for Caregiving & Evercare. (2008). Evercare study of Hispanic family caregiving in the U.S. Findings from a national study. Retrieved from http://www.caregiving.org/data/Hispanic_Caregiver_Study_web_ENG_FINAL_11_04_08.pdf
  • Llanque, S.M., & Enríquez, M. (2012). Interventions for Hispanic Caregivers of Patients with Dementia : A Review of the Literature. American Journal of Alzheimer’s Disease and Other Dementias (27)1, 23-32.
  • Ory, M., Yee, J., Tennstedt, S., & Schulz, R. (2000). The extend and impact of dementia care: Unique challenges experienced by family caregivers. In R. Schulz (Ed.) Handbook on dementia caregiving (pp.1-32). New York: Springer.
  • Roth, D., Burgio, L., Gitlin, L., Gallagher-Thompson, D., Coon, D., Belle, S. H., et al. (2003). Psychometric analysis of the Revised Memory and Behavior Problems Checklist: A factor structure of occurrence and reaction ratings. Psychology & Aging, 18(4), 906-915.
  • Rymer, S., Salloway, S., Norton, L., Malloy, P., Correia, S., & Monast, D. (2002). Impaired awareness, behavior disturbance, and caregiver burden in Alzheimer disease. Alzheimer Disease & Associated Disorders,16(4):248-253.
  • Sabogal, F., Marin, G., Otero-Sabogal, R., Marin, B., & Perez-Stable, E. (1987). Hispanic familismo and acculturation: What changes and what doesn't. Hispanic Journal Behavioral Sciences, 9, 397-412.
  • Spradley, J. P. (1979). The ethnographic interview. New York: Holt, Rinehart and Winston.
  • Talamantes, M. A., & Aranda, M. P. (2004). Cultural competency in working with family caregivers. San Francisco: Family Caregiving Alliance.
  • Talamantes, M. A., Trejo, L., Jiménez, D., & Gallagher-Thompson, D. (2006). Working with Mexican-American families. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the dementias (2nd ed., pp. 327-340). New York: Routledge Taylor & Francis Group.
  • Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P. (1992). Assessment of behavioral problems in dementia: The Revised Memory and Behavior Problems Checklist. Psychology & Aging, 7, 622-631.
  • Vitaliano, P. P., Young, H. M., & Russo, J. (1991). Burden: A review of measures used among caregivers of individuals with dementia. Gerontologist, 31(1), 67-75.
  • Wortmann M. (2012). Dementia: a global health priority - highlights from an ADI and World Health Organization report. Alzheimer's research & therapy, 4(5), 40.
  • Zarit, S., Reever, K., & Bach-Peterson, J. (1987). A comparison of Black and white dementia family caregivers and noncaregivers. Psychology and Aging, 10, 540-552.
  • Zarit, S., & Zarit, J. (1982). Families under stress: Interventions for caregivers of senile dementia patients. Psychotherapy: Theory, Research and Practice, 19(4), 461-471.
Toplam 45 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Konular Sağlık Kurumları Yönetimi
Bölüm Araştırma Makaleleri
Yazarlar

Lyda Arevalo-flechas 0000-0002-1580-3805

Yayımlanma Tarihi 20 Ağustos 2019
Yayımlandığı Sayı Yıl 2019 Cilt: 1 Sayı: 2

Kaynak Göster

APA Arevalo-flechas, L. (2019). Latino Alzheimer’s Caregiving: Neither a Burden nor a "Carga". Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi, 1(2), 92-103.
AMA Arevalo-flechas L. Latino Alzheimer’s Caregiving: Neither a Burden nor a "Carga". SBÜHD. Ağustos 2019;1(2):92-103.
Chicago Arevalo-flechas, Lyda. “Latino Alzheimer’s Caregiving: Neither a Burden nor a ‘Carga’”. Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi 1, sy. 2 (Ağustos 2019): 92-103.
EndNote Arevalo-flechas L (01 Ağustos 2019) Latino Alzheimer’s Caregiving: Neither a Burden nor a "Carga". Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi 1 2 92–103.
IEEE L. Arevalo-flechas, “Latino Alzheimer’s Caregiving: Neither a Burden nor a ‘Carga’”, SBÜHD, c. 1, sy. 2, ss. 92–103, 2019.
ISNAD Arevalo-flechas, Lyda. “Latino Alzheimer’s Caregiving: Neither a Burden nor a ‘Carga’”. Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi 1/2 (Ağustos 2019), 92-103.
JAMA Arevalo-flechas L. Latino Alzheimer’s Caregiving: Neither a Burden nor a "Carga". SBÜHD. 2019;1:92–103.
MLA Arevalo-flechas, Lyda. “Latino Alzheimer’s Caregiving: Neither a Burden nor a ‘Carga’”. Sağlık Bilimleri Üniversitesi Hemşirelik Dergisi, c. 1, sy. 2, 2019, ss. 92-103.
Vancouver Arevalo-flechas L. Latino Alzheimer’s Caregiving: Neither a Burden nor a "Carga". SBÜHD. 2019;1(2):92-103.

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