Demanslı Bireylere Bakım Veren Aile Üyelerinin COVID-19 Pandemisi Sürecindeki Deneyimleri: Niteliksel Bir Çalışma

Yıl 2023, , 357 - 372, 15.07.2023

Merve Aliye Akyol , Özlem Küçükgüçlü Burcu Akpınar Söylemez Seher Gönen Şentürk , Baran Gül

https://doi.org/10.46483/jnef.1327432

Cited By: 2

Öz

Giriş: COVID-19 virüsünün dünya çapında hızla yayılması ve belirsiz uzunluktaki kısıtlamalar göz önüne alındığında, demanslı bireylere bakım verenlerin deneyimlerini ve ihtiyaçlarını belirlemek son derece önemlidir.
Amaç: Bu çalışma, COVID-19 pandemisi sürecinde demanslı bireylere bakım veren aile üyelerinin deneyimlerini anlamayı amaçlamıştır.
Yöntem: Bu araştırma, derinlemesine görüşmelerin kullanıldığı betimsel nitel bir çalışmadır. Çalışma örneklemini Ocak-Şubat 2021 tarihleri arasında Türkiye’nin batısında bulunan demanslı bireylere bakım veren 29 birey oluşturmuştur. Verilerin çözümlenmesinde içerik analizi tekniği kullanılmıştır.
Bulgular: Verilerden bir dizi tema türetilmiştir. Demanslı bireye bakım verenlerin deneyimleri iki ana göze çarpan temada gruplandırılmıştır: Zorluklar ve çözüm bulma. Bakım verenlerin pandemi sürecinde yaşadıkları deneyimler çeşitlilik göstermiştir. Ayrıca, bakım verenlerin çoğunun birden fazla ve ciddi sorunları bulunmaktaydı.
Sonuç: Bu çalışma, demanslı bireylerin bakım veren aile üyelerinin COVID-19 pandemisi sürecindeki ihtiyaçları ve zorluklarını vurgulamaktadır. Uygulanabilir ve etkili bakım stratejileri kullanarak demanslı bireylerin ailelerinin sorunlarıyla hızla mücadele etmek önemlidir.

Anahtar Kelimeler

Bakım Verenler, COVID-19, Demans, Nitel Araştırma

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic: A Qualitative Study

Öz

Background: Given the rapid spread of the COVID-19 virus and an uncertain length of restrictions worldwide, it is extremely important to determine the experiences and needs of the caregivers of people with dementia (PwD).
Objectives: This study aimed to understand the experiences of family caregivers of PwD during the COVID-19 pandemic.
Methods: This study was a descriptive qualitative study using in-depth interviews. The study sample consisted of 29 caregivers of PwD from January to February 2021 in western of Turkey. The content analysis technique was used to analyze the data.
Results: A range of themes were derived from the data. The experiences of caregivers of PwD were grouped into two main salient themes: difficulties and funding solutions. The experiences of caregivers during the pandemic process varied. Also, most caregivers had multiple and serious problems.
Conclusion: This study highlights the challenges and needs for family caregivers of PwD during the COVID-19 pandemic. It is important to better tackle the rapid challenges of families living with dementia by using feasible and effective care strategies.

Anahtar Kelimeler

Caregivers, COVID-19, Dementia, Qualitative Research

Kaynakça

• Alzheimer’s Association. (2020). Coronavirus (COVID-19): Tips for Dementia Caregivers. https://www.alz.org/media/documents/alzheimers-coronavirus-covid19-tips-for-dementia-caregivers-ts.pdf.
• Alzheimer’s Disease International. (2019). World Alzheimer Report 2019 Attitudes to dementia. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf
• Alzheimer Europe. (2020). Alzheimer Europe recommendations on promoting the wellbeing of people with dementia and carers during the COVID-19 pandemic. Luxemburg: Alzheimer Europe. https://www.alzheimer-europe.org/Policy/Our-opinion-on/Wellbeing-of-people-with-dementia-during-COVID-19-pandemic.
• Boddy, C. R. (2016). Sample size for qualitative research. Qualitative Market Research, 19(4), 426-432.
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2),77-101.
• Cagnin, A., Di Lorenzo, R., Marra, C., Bonanni, L., Cupidi, C., Laganà, V., et al. (2020). Behavioral and psychological effects of coronavirus disease-19 quarantine in patients with dementia. Frontiers in Psychiatry, 11,578015. https://doi.org/10.3389/fpsyt.2020.578015
• Canevelli, M., Valletta, M., Blasi, M. T., Remoli, G., Sarti, G., Nuti, F., et al. (2020). Facing dementia during the COVID‐19 outbreak. Journal of American Geriatrics Society, 68(8),1673-1676. https://doi.org/10.1111/jgs.16644
• Carcavilla, N., Pozo, A. S., González, B., Moral-Cuesta, D., Roldán, J. J., Erice, V., et al. (2021). Needs of dementia family caregivers in Spain during the COVID-19 pandemic. Journal of Alzheimers Disease, 80(2),533-537. https://doi.org/10.3233/JAD-201430
• Centers for Disease Control and Prevention [CDC]. (2020). COVID-19 information for specific groups of people. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/index.html
• Cohen, G., Russo, M. J., Campos, J. A., & Allegri, R. F. (2020). Living with dementia: Increased level of caregiver stress in times of COVID-19. International Psychogeriatrics, 32(11),1377-1381. https://doi.org/10.1017/S1041610220001593
• Colorafi, K. J., & Evans, B. (2016). Qualitative descriptive methods in health science research. Health Environments Research & Desing Jounal, 9(4),16-25. https://doi.org/10.1177/193758671561417
• Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry and research design: Choosing among five approaches. (4rd ed.). Thousand Oaks, California: Sage.
• Denham, A. M., Wynne, O., Baker, A. L., Spratt, N. J., Turner, A., Magin, P., et al. (2020). An online survey of informal caregivers’ unmet needs and associated factors. PloS one, 15(12),e0243502. https://doi.org/10.1371/journal.pone.0243502
• Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1),107-115. https://doi.org/10.1111/j.1365-2648.2007.04569.x
• Fox, N. C., & Petersen, R. C. (2013). The G8 dementia research summit--a starter for eight? The Lancet, 382,1968-1969. https://doi.org/10.1016/S0140-6736(13)62426-5
• Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., et al. (2021). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: A qualitative study. Aging & Mental Health, 25(7),1281-1288. https://doi.org/10.1080/13607863.2020.1822292
• Greenberg, N. E., Wallick, A., Brown, L. M. (2020). Impact of COVID-19 pandemic restrictions on community-dwelling caregivers and persons with dementia. Psychological Trauma: Theory, Research, Practice, and Policy 12(S1), S220. https://doi.org/10.1037/tra0000793
• Hwang, Y., Connell, L. M., Rajpara, A. R., & Hodgson, N. A. (2021). Impact of COVID-19 on dementia caregivers and factors associated with their anxiety symptoms. American Journal of Alzheimer’s Disease & Other Dementias, 36, 15333175211008768. https://doi.org/10.1177/1533317521100876
• Janssen, N., Handels, R. L., Köhler, S., Gonçalves-Pereira, M., Marques, M. J., Irving, K., et al. (2020). Profiles of met and unmet needs in people with dementia according to caregivers’ perspective: Results from a European Multicenter Study. Journal of the American Medical Directors Association, 21(11),1609-1616. https://doi.org/10.1016/j.jamda.2020.05.009
• Kelland K. (2020, May 13). U.N. Warns of global mental health crisis due to COVID-19 pandemic. World News. https://www.reuters.com/article/us-health-coronavirus-mentalhealth-idUSKBN22Q0AO
• Keng, A., Brown, E. E., Rostas, A., Rajji, T. K., Pollock, B. G., Mulsant, B. H., et al. (2020). Effectively caring for individuals with behavioral and psychological symptoms of dementia during the COVID-19 pandemic. Frontiers Psychiatry 11,573367. https://doi.org/10.3389/fpsyt.2020.573367
• Kerpershoek, L., de Vugt, M., Wolfs, C., Woods, B., Jelley, H., Orrell, M., et al. (2018). Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice. Aging & Mental Health, 22(7),897-902. https://doi.org/10.1080/13607863.2017.1390732
• Kobayashi, R., Hayashi, H., Kawakatsu, S., Morioka, D., Aso, S., Kimura, M., Otani, K. (2020). Recognition of the coronavirus disease 2019 pandemic and face mask wearing in patients with Alzheimer’s disease: An investigation at a medical centre for dementia in Japan. Psychogeriatrics, 20(6),923-925. https://doi.org/10.1111/psyg.12617
• Mok, V. C., Pendlebury, S., Wong, A., Alladi, S., Au, L., Bath, P. M., et al. (2020). Tackling challenges in care of Alzheimer’s disease and other dementias amid the COVID-19 pandemic, now and in the future. Alzheimer’s & Dementia, 16(11),1571-1581. https://doi.org/10.1002/alz.12143
• Monin, J. K., Jorgensen, T. D., & Vroomen, J. L. M. (2020). Self-reports and caregivers’ proxy reports of unmet needs of persons with dementia: Implications for both partners’ health-related quality of life. The American Journal of Geriatric Psychiatry, 28(3),363-367. https://doi.org/10.1016/j.jagp.2019.10.006
• Oba, H., Kadoya, Y., Okamoto, H., Matsuoka, T., Abe, Y., Shibata, K., et al. (2021). The economic burden of dementia: Evidence from a survey of households of people with dementia and their caregivers. International Journal of Environmental Research and Public Health, 18(5),2717. https://doi.org/10.3390/ijerph18052717
• Pandey, S. C., & Patnaik, S. (2014). Establishing reliability and validity in qualitative inquiry: A critical examination. Jharkhand Journal of Development and Management Studies, 12(1),5743-5753.
• Park, M., Choi, S., Lee, S. J., Kim, S. H., Kim, J., Go, Y., Lee, D. Y. (2018). The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia. International Psychogeriatrics 30(4),557-567. https://doi.org/10.1017/S104161021700196X
• Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing & Health, 33(1),77-84. https://doi.org/10.1002/nur.20362
• Savla, J., Roberto, K. A., Blieszner, R., McCann, B. R., Hoyt, E., Knight, A. L. (2021). Dementia caregiving during the “stay-at-home” phase of COVID-19 pandemic. The Journals of Gerontology: Series B, 76(4),e241-e245. https://doi.org/10.1093/geronb/gbaa129
• Senturk Gonen, S., & Kucukguclu, O. (2021). Bridging healing and therapy: A mixed-methods study on support group intervention based on Watson’s theory of human caring. Holistic Nursing Practice, 35(2),81-91. https://doi.org/10.1097/HNP.0000000000000435
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6),349-357. https://doi.org/10.1093/intqhc/mzm042
• Tsapanou, A., Papatriantafyllou, J. D., Yiannopoulou, K., Sali, D., Kalligerou, F., Ntanasi, E., et al. (2021). The impact of COVID‐19 pandemic on people with mild cognitive impairment/dementia and on their caregivers. International Journal of Geriatric Psychiatry, 36(4),583-587. https://doi.org/10.1002/gps.5457
• Tuijt, R., Frost, R., Wilcock, J., Robinson, L., Manthorpe, J., Rait, G., et al. (2021). Life under lockdown and social restrictions-the experiences of people living with dementia and their carers during the COVID-19 pandemic in England. BMC Geriatrics, 21,301. https://doi.org/10.1186/s12877-021-02257-z
• Vaitheswaran, S., Lakshminarayanan, M., Ramanujam, V., Sargunan, S., Venkatesan, S. (2020). Experiences and needs of caregivers of persons with dementia in India during the COVID-19 pandemic-A qualitative study. American Journal of Geriatric Psychiatry 28(11),1185-1194. https://doi.org/10.1016/j.jagp.2020.06.026
• Victor, C. R., Rippon, I., Quinn, C., Nelis, S. M., Martyr, A., Hart, N., et al. (2021). The prevalence and predictors of loneliness in caregivers of people with dementia: Findings from the IDEAL programme. Aging & Mental Health, 25(7),1232-1238. https://doi.org/10.1080/13607863.2020.1753014
• Volicer, L. (2018). Behavioral problems and dementia. Clinics in Geriatric Medicine, 34(4),637-651. https://doi.org/10.1016/j.cger.2018.06.009
• Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., Molinuevo, J. L., et al. (2020). Dementia care during COVID-19. The Lancet, 395(10231),1190-1191. https://doi.org/10.1016/S0140-6736(20)30755-8
• World Health Organization. (2020). Coronovirus disease (COVID-19) pandemic. https://www.who.int/emergencies/diseases/novel-coronavirus-2019
• Zhang, J., Xu, X., Yang, L., & Wang, J. (2021). Met and unmet care needs of home‐living people with dementia in China: An observational study using the Camberwell assessment of need for the Elderly. Geriatrics & Gerontology International, 21(1),102-107. https://doi.org/10.1111/ggi.14093
• Zwingmann, I., Michalowsky, B., Esser, A., Kaczynski, A., Monsees, J., Keller, A., et al. (2019). Identifying unmet needs of family dementia caregivers: Results of the baseline assessment of a cluster-randomized controlled intervention trial. Journal of Alzheimer’s Disease, 67(2),527-539. https://doi.org/10.3233/JAD-180244