‘Ya Ondan Önce Ölürsem?' Palyatif Bakımda Bakımverenlerin Endişeleri

Yıl 2023, , 982 - 986, 30.09.2023

Canan Tuz , Alis Özçakır

https://doi.org/10.16899/jcm.1345365

Öz

Giriş: Bakımverenler, hastalarına ücretsiz yardım sağlayan aile üyeleridir. Türkiye'de hastalar hastaneye yatırıldığında aile bakımı, katılım ve desteğe ihtiyaç duyulmaktadır. Bu çalışma, palyatif bakım ortamında bakımverenlerin davranışlarının ardındaki duygularını daha iyi anlamayı amaçlamaktadır.
Yöntemler: Bu araştırma fenomenoloji ile tasarlanmış kesitsel nitel bir çalışmadır. Katılmak için gönüllü olan beş yüz yüze görüşme yapıldı. Dahil etme kriterleri, hastaya evde ve hastanede bakım sağlayan yetişkin refakatçiler olarak belirlendi.
Bulgular: Bakımverenlerin yaş ortalaması 44,8 ± 4,80 yıl olan beş kadından oluşmaktadır. Hastaların tanısı sırasıyla Alzheimer hastalığı, demans, mide kanseri ve inme idi. Bakım süresi yaklaşık 2,79 ± 1,62 yıldı. Dört tema ve on bir alt tema belirtildi: Kendileriyle ilgili endişeler: Sağlık sorunlarını abartmak, Güçlü kalma kaygısı; Hastaya bağlı sonuçlar: Hastayı kahraman gibi hatırlamak; Durumun kabulü “Onu ölü bulma” korkusu ; Bakıcılıkla ilgili zorluklar Hayattan fedakarlık, Aşırı sorumluluk ,Bebek bezi bakımından utanç ,bakım vermeye başladığında oryantasyon eksikliği Başa çıkma stratejileri Dini inançlar.
Sonuç: Çalışmanın sonucunda, bakımverenlerin kendileri ve rollerindeki sonuçlar hakkında endişeleri olduğunu göstermektedir. Maneviyatla başa çıkmaya çalışsalar bile, sağlık hizmeti sağlayıcıları temel rollerini kabul ederek onlara destek olabilirler.

Anahtar Kelimeler

palyatif bakım, bakımverenler, endişeler, spirtualizm

Destekleyen Kurum

NONE

Proje Numarası

NONE

Teşekkür

MURAT ÇEVİK

'What if I Die Before Him?' Concerns of Caregivers in Palliative Care

Öz

Background/Aims: Caregivers are family members who provide unpaid assistance to their ill spouses. In Turkey, family caregiving, engagement, and support are needed when patients are hospitalized. This study aims to better understand the feelings of caregivers behind their behaviors in a terrier palliative care setting.
Methods: This research is a cross-sectional qualitative study designed with phenomenology. Five family caregivers who volunteered to participate were interviewed face-to-face. Inclusion criteria were adult informal caregivers who currently provided care to the patient at home and in the hospital.
Results: The family caregivers consist of five spouses with a mean age of 44.8 ± 4.80 years. Each caregiver is a female and the spouse of the patient. Of the patients diagnosis was Alzheimer’s disease, dementia, gastric cancer, and stroke, respectively. The caregiving time was approximately 2.79 ± 1.62 years. Four themes and eleven subthemes were indicated: Concerns about themselves: Overestimating their health care problems, Anxiety about staying strong; Consequences of the patient: Remembering the patient like a “hero”; Acceptance of the situation Fear of “finding him death” Challenges about caregiving Sacrificing from life Excessive responsibility Embarrassment from diaper care Lack of orientation for caregiving at first Coping strategies Devine providence Religious beliefs.
Conclusions: The findings of the study indicate that family caregivers have concerns about themselves and the consequences of their roles. Even if they try to cope with spirituality, healthcare providers can support them by recognizing their essential roles.

Anahtar Kelimeler

palliative care, family caregivers, concerns, Spirituality

Proje Numarası

NONE

Kaynakça

• 1. Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M, Munyoro EC, Centeno C, Cleary J, Connor S, Davaasuren O, Downing J, Foley K, Goh C, Gomez-Garcia W, Harding R, Khan QT, Larkin P, Leng M, Luyirika E, Marston J, Moine S, Osman H, Pettus K, Puchalski C, Rajagopal MR, Spence D, Spruijt O, Venkateswaran C, Wee B, Woodruff R, Yong J, Pastrana T. Redefining Palliative Care-A New Consensus-Based Definition. J Pain Symptom Manage. 2020;60(4):754-764. doi: 10.1016/j.jpainsymman.2020.04.027.
• 2. 70343928.pdf [Internet]. [cited 2023 Aug 16]. Available from: https://core.ac.uk/download/pdf/70343928.pdf
• 3. Sayin Kasar K, Yildirim Y, Bulut U. Comfort Level in Caregivers of Palliative Care Patients and Affecting Factors: What Should We Know? Omega (Westport). 2023;86(4):1461-1472. doi: 10.1177/00302228211014779.
• 4. McKibben L, Brazil K, McLaughlin D, Hudson P. Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study. Palliat Support Care. 2021;19(4):405-414. doi: 10.1017/S1478951520001157. PMID: 33138885.
• 5. Hart NH, Crawford-Williams F, Crichton M, Yee J, Smith TJ, Koczwara B, Fitch MI, Crawford GB, Mukhopadhyay S, Mahony J, Cheah C, Townsend J, Cook O, Agar MR, Chan RJ. Unmet supportive care needs of people with advanced cancer and their caregivers: A systematic scoping review. Crit Rev Oncol Hematol. 2022; 176:103728. doi 10.1016/j.critrevonc.2022.103728. Epub 2022 Jun 1. PMID: 35662585.
• 6. Vrettos I, Voukelatou P, Panayiotou S, Kyvetos A, Nikas A, Makrilakis K, Sfikakis PP, Niakas D. Factors Affecting Caregivers' Burden in a Sample of Greek Family Caregivers Caring for Older Adults. J Gerontol Soc Work. 2023 ;66(5):694-707. doi: 10.1080/01634372.2022.2135658. Epub 2022 Oct 18. PMID: 36256953.
• 7. Fauziah W, Kato M, Shogenji M, Tsujiguchi H, Taniguchi Y. Factors Associated with Depression Among Family Caregivers of Patients With Stroke in Indonesia: A Cross-Sectional Study. J Nurs Res. 2022;30(5): e231. doi: 10.1097/jnr.0000000000000515. PMID: 36018723.
• 8. Gardiner C, Taylor B, Goodwin H, Robinson J, Gott M. Employment and family caregiving in palliative care: An international qualitative study. Palliat Med. 2022;36(6):986-993. Doi: 10.1177/02692163221089134. PMID: 35848213; PMCID: PMC9344494.
• 9. Thomas Hebdon MC, Phan CT, Phillips C, et al. Ethical and Policy Implications of Financial Burden in Family Caregivers. Journal of Hospice and Palliative Nursing: JHPN: the Official Journal of the Hospice and Palliative Nurses Association. 2022 ;24(5): E226-E232. DOI: 10.1097/njh.0000000000000887. PMID: 35666768.
• 10. Thomas Hebdon MC, Phan CT, Phillips C, et al. Ethical and Policy Implications of Financial Burden in Family Caregivers. Journal of Hospice and Palliative Nursing: JHPN: the Official Journal of the Hospice and Palliative Nurses Association. 2022 ;24(5): E226-E232. DOI: 10.1097/njh.0000000000000887. PMID: 35666768.
• 11. Vestphal, T K., Gildberg, F A., Jørgensen, R., Rowaert, S., & Tingleff, E B. (2023). Experiences of family caregivers in forensic mental health care—A qualitative evidence synthesis. Journal of Psychiatric and Mental Health Nursing, 30, 663–678. https://doi.org/10.1111/jpm.12910
• 12. Soroka JT, Froggatt K, Morris S. Family Caregivers' Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study. Am J Hosp Palliat Care. 2018;35(12):1540-1546. doi: 10.1177/1049909118787779. Epub 2018 Jul 11. PMID: 29996659.
• 13. Fernandes JB, Domingos J, Castro C, Simões A, Fernandes S, Almeida AS, Bernardes C, Miranda L, Risso S, Ferreira R, Baixinho CL, Silvestre M, Godinho C. Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol. Front Psychol. 2023,13:1071711. doi 10.3389/fpsyg.2022.1071711. PMID: 36687876; PMCID: PMC9853914.
• 14. Phenomenological Research Methodology by Neville Greening published at: "Scientific Research Journal (Scirj), Volume VII, Issue V, May 2019 Edition, Page 88-92 ".
• 15. Penner, J. L., & McClement, S. E. (2008). Using Phenomenology to Examine the Experiences of Family Caregivers of Patients with Advanced Head and Neck Cancer: Reflections of a Novice Researcher. International Journal of Qualitative Methods, 7(2), 92–101. https://doi.org/10.1177/160940690800700206
• 16. Mason N, Hodgkin S. Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers. Health Soc Care Community. 2019;27(4):926-935. doi 10.1111/hsc.12710. Epub 2019 Feb 27. PMID: 30810249.
• 17. Chi NC, Nakad L, Han S, Washington K, Hagiwara Y, Riffin C, Oliver DP, Demiris G. Family Caregivers' Challenges in Cancer Pain Management for Patients Receiving Palliative Care. Am J Hosp Palliat Care. 2023;40(1):43-51. doi: 10.1177/10499091221094564. Epub 2022 May 3. PMID: 35503240; PMCID: PMC10201988.
• 18. Niu A, Guo C, Zhong D, He G, Zhong W, Wang L, Chen Y, Shang L, Fu J. Identifying the Unmet Supportive Care Needs, with Concomitant Influencing Factors, in Family Caregivers of Cancer Patients in China. Asia Pac J Oncol Nurs. 2021;8(3):276-286. doi: 10.4103/apjon.apjon_52_20. PMID: 33850961; PMCID: PMC8030597.
• 19. Robertson SB, Hjörleifsdóttir E, Sigurðardóttir Þ. Family caregivers' experiences of end-of-life care in the acute hospital setting. A qualitative study. Scand J Caring Sci. 2022 Sep;36(3):686-698. doi: 10.1111/scs.13025. Epub 2021. PMID: 34382701; PMCID: PMC9545473.
• 20. Cheng Q, Xu B, Ng MSN, Zheng H, So WKW. Needs assessment instruments for family caregivers of cancer patients receiving palliative care: a systematic review. Support Care Cancer. 2022;30(10):8441-8453. doi: 10.1007/s00520-022-07122-2. Epub 2022 May 28. PMID: 35633413.
• 21. Harding R, Epiphaniou E, Hamilton D, Bridger S, Robinson V, George R, Beynon T, Higginson IJ. What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Support Care Cancer. 2012;20(9):1975-82. doi: 10.1007/s00520-011-1300-z. Epub 2011 Nov 10. PMID: 22072049.
• 22. Pepin E, Hébert J. Needs of caregivers of patients receiving in-home palliative and end-of-life care. Can Oncol Nurs J. 2020;30(2):147-152. doi: 10.5737/23688076302147152. PMID: 33118991; PMCID: PMC7586699.
• 23. Williams, Lisa & Dewes, Ofanaite & Gott, Merryn. (2020). I heard it on the radio: supporting Pacific family carers through the development of culturally appropriate resources, a descriptive qualitative study. Progress in Palliative Care. 29. 1-4. 10.1080/09699260.2020.1841876.
• 24. Selman LE, Brighton LJ, Sinclair S, Karvinen I, Egan R, Speck P, Powell RA, Deskur-Smielecka E, Glajchen M, Adler S, Puchalski C, Hunter J, Gikaara N, Hope J; InSpirit Collaborative. Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries. Palliat Med. 2018;32(1):216-230. doi: 10.1177/0269216317734954. Epub 2017 Oct 12. PMID: 29020846; PMCID: PMC5758929.