運用以家庭為中心概念照顧一位多重器官畸形兒之護理經驗

A Nursing Experience Applying the Concept of Family-Center to Care a Newborn with VACTERL Association

10.3966/102673012016122704011

徐麗芬(Li-Feng Hsu)；魏自宜(Tzu-Yi Wei)

以家庭為中心照護 ； 多重器官畸形 ； family-centered care ； vacterl association

長庚護理

27卷4期（2016 / 12 / 01）

603 - 612

繁體中文

多重器官畸形的發生影響病童的外觀、排泄及呼吸功能，家屬學習照護技能上也較為複雜困難，本文為照顧一位併有食道氣管廔管、唇顎裂及無肛症個案之護理經驗，筆者自2012 年5 月18 日至2012 年6 月30 日期間，運用身體評估、觀察、溝通會談、直接照顧個案，並加以確立問題，發現個案有皮膚完整性受損、無效性嬰兒哺餵及照顧者角色緊張等護理健康問題，筆者於護理過程中，以家庭為中心的照護概念，提供彈性會客、獨立照護空間、一對一示教、回示教等個別性、整體性、連續性之照顧，使個案及其核心家庭得到最好照顧並能減輕主要照顧者之角色緊張的壓力，希望藉此護理經驗提供護理同仁對此類個案照顧之了解。

The occurrence of the VACTERL association would affect the general appearance, excretion and respiratory function of the infants. The skills of care that the family members are required to learn are also more complex and difficult. This article described the nursing experience of caring a newborn with tracheo- esophageal fistula and anal atresia. The author used physical assessment, observation, communication meetings, and directly patient care to collect information from May 18, 2012 to June 30, 2012. The patient was identified as having several health problems, including impaired skin integrity, oral feeding difficulty, and caregiver role strain. During the nursing process, the author used the family-centered care that provided flexible visiting, privacy care space, one-by-one teaching, and performance evaluation after demonstration. The nursing care was individualized, integrated, and continuous. The case and his primary family members received the best care and the primary caregiver role strain pressure was greatly reduced. We shared this nursing experience with nurses caring for patients with similar conditions.

1. 唐先梅、曾敏傑(2008)。罕見疾病家庭的壓力源︰一項探索式的質性研究。特殊教育研究學刊，33(2)，47-70。
   連結：
2. Al Kaissi, A.,Kalchhauser, G.,Klaushofer, K.,Handlbauer, A.,Grill, F.(2012).Distinctive vertebral abnormalities in a patient with VACTERL association.Rofo,184(1),62-65.
3. Coker, T. R.,Rodriguez, M. A.,Flores, G.(2010).Family centered care for US children with special health care needs: Who gets it and why?.Pediatrics,125(6),1159-1167.
4. Drotar, D.,Baskiewicz, A.,Irvin, N.,Kennell, J.,Klaus, M.(1975).The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model.Pediatrics,56(5),710-717.
5. Graham, R. J.,Pemstein, D. M.,Curley, M. A.(2009).Experiencing the pediatric intensive care unit: Perspective from parents of children with severe antecedent disabilities.Critical Care Medicine,37(6),2064-2070.
6. Holmes, G. E.(1986).Growth in the VATER association.American Journal of diseases of children,140(12),1214-1216.
7. Khoury, M. J.,Cordero, J. F.,Greenberg, F.,Levy, M. J.,Erickson, D. D.(1983).A population study of the VATERL association: Evidence for its etiologic heterogeneity.Pediatric,71(5),815-820.
8. Lin, H. Y.,Lin, S. P.,Lin, H. Y.,Hsu, C. H.,Chang, J. H.,Kao, H. A.,Tsai, J. D.(2012).Functional independence of Taiwanese children with VACTERL association.American Journal of Medical Genetics Part A,158A(12),3101-3105.
9. Martha, A. Q.,Mabel, H.,Sion, K. H.(2013).Psychometric evaluation of the family centered care scale for pediatric acute care nursing.Nursing Research,62(3),160-168.
10. Mercer, R. T.(2004).Becoming a mother versus mathernal role attaiment.Journal of Nursing Scholarship,36(3),226-232.
11. Morgan, R. D.,O'Callaghan, J. M.,Wagener, S.,Grant, H. W.,Lakhoo, K.(2012).Surgical correction of tracheo-oesophageal fistula and oesophageal atresia in infants with VACTERL association: a retrospective case-control study.Pediatric Surgery International,28(10),967-970.
12. 陳月枝校閱(2014)。實用兒科護理。台北=Taipei City, ROC:華杏=Farseeing。
13. 程子芸(1994)。一位生下先天性缺陷兒的母親其壓力源及克服行為。護理雜誌，41(4)，39-47。
14. 黃依晴(2011)。初產婦與早產兒建立親子依附關係之護理經驗。領導護理，12(2)，78-82。
15. 謝靜、賀國珍(2007)。一位先天性膽道閉鎖患孩母親之壓力及因應行為。長庚護理雜誌，18(1)，112-119。

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