探討成年惡性腦瘤病人復發期護理人員照護經驗

Exploring the Nursing Experience of Adult Patients with Recurrent Malignant Brain Tumor

10.6142/VGHN.202012_37(4).0001

梁靜娟(Ching-Chuan Liang)；溫美蓉(Mei-Rong Weng)；劉雅芬(Ya-Fen Liu)；張玉霞(Yu-Shiar Chang)；穆佩芬(Pei-Fan Mu)

惡性腦瘤復發 ； 預期性失落 ； 照護經驗 ； malignant brain tumor recurrence ； loss of expectation ； nursing experience

榮總護理

37卷4期（2020 / 12 / 01）

330 - 341

繁體中文

背景：護理人員在面臨惡性腦瘤復發病人之身體心理功能快速變差之際，應經由「以人為本」觀點建立有效照護模式，協助病人及家庭面對並適應疾病過程。目的：經由護理人員的照護經驗，探討成年惡性腦瘤復發期病人與家庭照護需求。研究方法：運用焦點團體研究法，進行三場共24位參與者分享惡性腦瘤復發期病人及家庭的照護經驗。並以質性分析方式統整，揭露病人及家庭的需求。結果：包含四個主題：一、疾病復發告知開啟預期性失落；二、即將失去摯愛家人的急迫性焦慮；三、家庭需要有效動態平衡調整；四、真誠共融的醫護病關係，形成強大支持場域。結論與討論：依研究結果統整出惡性腦瘤復發病人及家屬之需求本質，並結合跨領域醫療團隊資源，建構惡性腦瘤復發期病人與提升其家庭韌力為導向之護理照護建議：一、以家庭為關懷個體，共臨預期性失落；二、瞭解家庭結構，協助成員角色轉換；三、強化家庭面對疾病復發之韌性；四、良性正向的醫護病關係、順暢溝通管道。強調照護此類病人需建立有效的溝通策略，秉持「以人為本」出發點之護理關懷，展現獨特護理功能，提供其身、心、靈及社會的整體性照護，協助病人及家屬共同面對疾病的預期性失落，共渡未知恐懼的疾病歷程。

Background: The physical and mental functions of patients with recurrent malignant brain tumors can rapidly deteriorate. The nursing staff should establish effective models of care by using the ＂people-oriented＂ approach to help patients and their families face and adapt to the disease. Objective: To evaluate the needs of adult patients with recurrent malignant brain tumors and their families based on the experience of the nursing staff. Method: We used the focus group research method. A total of 24 participants shared their care experience (in three sessions) of patients and their families during recurrent malignant brain tumors. Qualitative analysis was performed to identify the needs of the patients and their families. Results: Four themes were included as follows: (1) The recurrence of the disease was informed to start the anticipatory loss, (2) The gravity of losing a beloved family member, (3) The family needs effective dynamic balance adjustment, and (4) An honest and inclusive relationship with health care providers who formed a strong support system. Conclusion and Discussion: Our findings revealed that to construct recurring malignant brain tumor patients and improve their family resilience-oriented nursing care recommendations: (1) Taking the family as a caring individual to co-prompt the expected loss; (2) Understanding the family structure and assisting members adapt to changing roles; (3) Strengthening the family's resilience in the face of disease recurrence; and (4) Building a caring and positive medical-care relationship and operating smooth communication channels. Emphasis that caring for patients with recurrent malignant brain tumors requires establishing effective communication strategies; upholding the ＂people-oriented＂ approach of nursing care; demonstrating the unique functions of nursing; providing holistic care for body, mind, spirit, and society; and assisting patients and their families cope with anticipatory loss.

1. Applebaum, A. J.,Kryza-Lacombe, M.,Buthorn, J.,DeRosa, A.,Corner, G.,Diamond, E. L.(2016).Existential distress among caregivers of patients with brain tumors: A review of the literature.Neuro-Oncology Practice,3(4),232-244.
2. Armocida, D.,Pesce, A.,Di Giammarco, F,Frati, A.,Santoro, A.,Salvati, M.(2019).Long term survival in patients suering from glio-blastoma multiforme: A single-center observational cohort study.Diagnostics,9(4),209.
3. Burri, S. H.,Gondi, V.,Brown, P. D.,Mehta, M. P.(2018).The evolving role of tumor treating fields in managing glioblastoma: Guide for oncologists.American Journal of Clinical Oncology,41(2),191-196.
4. Creswell, J. W.(2003).Resea rch design: Qualitative, quantitative and mixed methods approaches.London, England:Sage.
5. Faccio, F.,Renzi, C.,Crico, C.,Kazantzaki, E.,Kondylakis, H.,Koumakis, L.,Pravettoni, G.(2018).Development of an eHealth tool for cancer patients: Monitoring psychoemotional aspects with the family resilience (FaRe) questionnaire.Ecancermedicalscience,12,852.
6. Hlubocky, F. J.,Rose, M.,Epstein, R. M.(2017).Mastering resilence in oncology: Learn to thrive in the face of burnout.American Society of Clinical Oncology Educational Book,37,771-781.
7. Jakola, A. S.,Sagberg, L. M.,Gulati, S.,Solheim, O.(2020).Advancements in predicting outcomes in patients with glioma: A surgical perspective.Expert Review of Anticancer Therapy,20(3),167-177.
8. Lincoln, Y. S.,Guba, E. G.(1985).Naturalistic inquiry.Newbury Park, CA:Sage.
9. Lucchiari, C.,Botturi, A.,Silvani, A.,Lamperti, E.,Gaviani, P.,Innocenti, A.,Pravettoni, G.(2015).Cognitive strategies and quality of life of patients with high-grade glioma.Support Care in Cancer,23(12),3427-3435.
10. Norden, A. D.,Korytowsky, B.,You, M.,Le, T. K.,Dastani, H.,Bobiak, S.,Singh, P.(2019).A real-world claims analysis of costs and patterns of care in treated patients with glioblastoma multiforme in the United States.Journal of Managed Care & Special Pharmacy,25(4),428-436.
11. Ostrom, Q. T.,Gittleman, H.,Stetson, L.,Virk, S.,Barnholtz-Sloan, J. S.(2018).Epidemiology of intracranial gliomas.Progress in Neurological Surgery,30,1-11.
12. Piil, K.,Jakobsen, J.,Christensen, K. B.,Juhler, M.,Guetterman, T. C.,Fetters, M. D.,Jarden, M.(2018).Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study.European Journal of Cancer Care,27(2),e12806.
13. Piil, K.,Juhler, M.,Jakobsen, J.,Jarden, M.(2016).Controlled rehabilitative and supportive care intervention trials in patients with high-grade gliomas and their caregivers: A systematic review.BMJ Supportive & Palliative Care,6(1),27-34.
14. Røen, I.,Stifoss-Hanssen, H.,Grande, G.,Brenne, A. T.,Kaasa, S.,Sand, K.,Knudsen, A. K.(2018).Resilience for family carers of advanced cancer patientshow can health care providers contribute? A qualitative interview study with carers.Palliative Mdicine,32(8),1410-1418.
15. Rolland, J. S.(1994).Families, illness, and disability : An integrative treatment model.New York:Basic Books.
16. Rolland, J. S.(2005).Cancer and the family: An integrative model.Cancer,104(S11),2584-2595.
17. Rosenthal, M.(2016).Qualitative research methods: Why, when, and how to conduct interviews and focus groups in pharmacy research.Currents in Pharmacy Teaching and Learning,8(4),509-516.
18. Sacher, M.,Meixensberger, J.,Krupp, W.(2018).Interaction of quality of life, mood and depression of patients and their informal caregivers after surgical treatment of highgrade glioma: A prospective study.Journal of Neuro-Oncology,140(2),367-375.
19. Sterckx, W.,Coolbrandt, A.,Clement, P.,Borgenon, S.,Decruyenaere, M,De Vleeschouwer, S.,de Casterlé, B. D.(2015).Living with a high-grade glioma: A qualitative study of patients' experiences and care needs.European Journal of Oncology Nuring,19(4),383-390.
20. Stewart, D. W.,Shamdasani, P. N.(2014).Focus groups: Theory and practice.California City:SAGE.
21. Walsh, F.(2016).Applying a family resilience f ramewo rk in t raining, p ractice, and research : Mastering the art of the possible.Family Process,55(4),616-632.
22. Werlenius, K.,Fekete, B.,Blomstrand, M.,Carén, H.,Jakola, A. S.,Rydenhag, B.,Smits, A.(2020).Patterns of care and clinical outcome in assumed glioblastoma without tissue diagnosis: A population-based study of 131 consecutive patients.PLOS ONE,15(2),e0228480.
23. Yang, Y.,Rushton, S.,Park, H. K.,Son, H.,Woodward, A.,Mcconnell, E.,Hendrix, C. C.(2020).Understanding the associations between caregiver characteristics and cognitive function of adults with cancer: A scoping review.Asia-Pacific Journal of Oncology Nursing,7(2),115-128.
24. Zattra, C. M.,Zhang, D. Y.,Broggi, M.,Velz, J.,Vasella, F.,Seggewiss, D.,Stienen, M. N.(2019).Repeated craniotomies for intracranial tumors: is the risk increased? Pooled analysis of two prospective, institutional registries of complications and outcomes.Journal of Neuro-Oncology,142(1),49-57.
25. Zhao, Y. H.,Wang, Z. F.,Pan, Z. Y.,Péus, D.,Delgado-Fernandez, J.,Pallud, J.,Li, Z. Q.(2019).A meta-analysis of survival outcomes following reoperation in recurrent glioblastoma: Time to consider the timing of reoperation.Frontiers in Neurology,10,286.