運用Watson關懷理論照護一位Cohen幼兒家屬面臨氣切醫療決策衝突的護理經驗

A Nurse's Experience Providing Care to a Mother of a Toddler With Cohen's Syndrome Facing Tracheostomy Decision-Making Conflict Using Watson's Caring Theory

10.6224/JN.202310_70(5).13

林雅涵(Ya-Han LIN)；錢佳慧(Chia-Hui CHIEN)；溫淑如(Shu-Ru UEN)；蔡劭瑜(Shao-Yu TSAI)

罕見疾病 ； 氣切 ； 決策衝突 ； Watson's關懷理論 ； rare diseases ； tracheostomy ； decision-conflict ； Watson's caring theory

護理雜誌

70卷5期（2023 / 10 / 01）

98 - 107

繁體中文;英文

個案為1歲5個月診斷Cohen綜合症合併腦性麻痺的幼兒，自出生即在醫療場域中反覆住院及手術。此次住院期間，因氣管軟化、吞嚥與自咳能力差，經歷兩次急救，醫師建議接受氣管切開術，使案母面臨個案疾病對生命的威脅及照顧的負擔上，對氣切決策負擔著巨大的壓力。護理期間自2022年9月19日至12月6日，筆者透過於加護病房互動會談的行為過程紀錄、通訊軟體、院外訪視及病歷查閱等資料分析，確立主要護理問題為「決策衝突：氣管切開術之醫療決策」，並將此護理過程分為案母面臨氣切決策的（一）逃避期，（二）衝突期，及（三）決策後的因應期。以Watson關懷理論中的十項關懷因子做為核心，透過傾聽、一致性及同理心與案母建立互信關係，使筆者能夠了解其需求提供足夠的資訊，並藉由召開家庭會議促進溝通、結合安寧緩和醫療資源給予後續的照護支持，幫助其家庭找尋一個屬於他們生命的意義。

This case involved a 17-month-old toddler with Cohen's syndrome and cerebral palsy who had experienced multiple hospitalizations and operations since birth. During hospitalization, the patient suffered from tracheomalacia and poor swallowing and coughing abilities and had experienced two cardiopulmonary resuscitation events, after which a tracheotomy was suggested. Decision-making regarding the tracheotomy placed the mother under tremendous pressure, who was facing both the life-threatening disease of her son and her burden of care. During the nursing care period from 19th September to 6th December 2022, the author identified the main nursing problem as "decision-conflict: decision-making in relation to tracheotomy procedure" and distinguished the nursing process into (1) escape period, (2) conflict period, and (3) coping period after decision-making. Adopting the ten carative factors in Watson's Caring Theory as the core of her care approach, the author was able to establish a mutually trusting relationship with the mother and to understand her needs by means of listening, consistency, and empathy. This involved providing sufficient information and holding family meetings to facilitate communication in combination with palliative medical resources to provide follow-up care support as well as helping the family find meaning in their lives.

1. Allen, K. A.(2014).Parental decision-making for medically complex infants and children: An integrated literature review.International Journal of Nursing Studies,51(9),1289-1304.
2. Alligood, M. R.(Ed.)(2021).Nursing theorists and their work.Elsevier.
3. Belzer, L. T.,Wright, S. M.,Goodwin, E. J.,Singh, M. N.,Carter, B. S.(2022).Psychosocial considerations for the child with rare disease: A review with recommendations and calls to action.Children,9(7),933.
4. Bergsträsser, E.(2018).Pädiatrische palliative care: Was ist bei kindern anders als bei erwachsenen.Therapeutische Umschau,75(2),101-104.
5. Boss, R. D.,Henderson, C. M.,Raisanen, J. C.,Jabre, N. A.,Shipman, K.,Wilfond, B. S.(2021).Family experiences deciding for and against pediatric home ventilation.The Journal of Pediatrics,229,223-231.
6. Gill, F. J.,Hashem, Z.,Stegmann, R.,Aoun, S. M.(2021).The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review.Palliative Medicine,35(1),76-96.
7. Hallman-Cooper, J. L., & Cabrero, F. R. (2022). Cerebral palsy. In StatPearls [Internet]. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK538147/
8. Herdman、 T. H.(Ed.),Kamitsuru, S.(Ed.),黃靜微（譯）, C.-W.(Trans.)(2018).NANDA International 護理診斷：定義與分類 2018~2020.華杏=Farseeing.
9. Joseph, R. A.,Goodfellow, L. M.,Simko, L. C.(2014).Double ABCX model of stress and adaptation in the context of families that care for children with a tracheostomy at home: Application of a theory.Advances in Neonatal Care,14(3),172-180.
10. Klee, K.,Wilfond, B.,Thomas, K.,Ridling, D.(2022).Conflicts between parents and clinicians: Tracheotomy decisions and clinical bioethics consultation.Nursing Ethics,29(3),685-695.
11. Lin, J. L.,Clark, C. L.,Halpern-Felsher, B.,Bennett, P. N.,Assis-Hassid, S.,Amir, O.,Nunez, Y. C.,Cleary, N. M.,Gehrmann, S.,Grosz, B. J.,Sanders, L. M.(2020).Parent perspectives in shared decision-making for children with medical complexity.Academic Pediatrics,20(8),1101-1108.
12. Momtazmanesh, S.,Rayzan, E.,Shahkarami, S.,Rohlfs, M.,Klein, C.,Rezaei, N.(2020).A novel VPS13B mutation in Cohen syndrome: A case report and review of literature.BMC Medical Genetics,21(1),140.
13. Nageswaran, S.,Golden, S. L.,Gower, W. A.,King, N. M. P.(2018).Caregiver perceptions about their decision to pursue tracheostomy for children with medical complexity.The Journal of Pediatrics,203,354-360.e1.
14. Nageswaran, S.,Gower, W. A.,King, N. M. P.,Golden, S. L.(2022).Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?.Palliative & Supportive Care
15. Rodrigues, J. M.,Fernandes, H. D.,Caruthers, C.,Braddock, S. R.,Knutsen, A. P.(2018).Cohen syndrome: Review of the literature.Cureus,10(9),e3330.
16. Ronan, S.,Brown, M.,Marsh, L.(2020).Parents’ experiences of transition from hospital to home of a child with complex health needs: A systematic literature review.Journal of Clinical Nursing,29(17-18),3222-3235.
17. Vadeboncoeur, C.,McHardy, M.(2018).Benefits of early referral to pediatric palliative care for a child with a rare disease.Pediatrics,141(6),e20173417.
18. 台灣安寧緩和醫學學會=Taiwan Academy of Hospice Palliative Medicine(2020).臺灣兒童安寧緩和醫療照護參考手冊.衛生福利部國民健康署=Health Promotion Administration, Ministry of Health and Welfare, Taiwan, ROC.
19. 孫婉娜, W.-N.,許心恬, H.-T.(2017)。決策衝突之論述。高雄護理雜誌，34(1)，25-35。
20. 衛生福利部國民健康署（2022，11月16日）．111年10月罕見疾病通報個案統計表。[Health Promotion Administration, Ministry of Health and Welfare, Taiwan, ROC. (2022, November 16). Statistics on confirmed cases of rare diseases in Taiwan, Oct., 2022.] https://www.hpa.gov.tw/Pages/Detail.aspx?nodeid=4586&pid=16284