運用FOCUS家庭介入措施於四度腦室出血早產兒及其家庭之照護經驗

Using the FOCUS Family Intervention for Family-Centered Care in a Premature Infant With Grade IV Intraventricular Hemorrhage

10.6224/JN.202002_67(1).13

邱暄予(Xuan-Yu QIU)；范圭玲(Guei-Ling FANN)；楊曉玲(Hsiao-Ling YANG)

早產兒 ； 四度腦室出血 ； 家庭照護 ； FOCUS計畫 ； premature infant ； grade iv intraventricular hemorrhage ； family-centered care ； the FOCUS program

護理雜誌

67卷1期（2020 / 02 / 01）

106 - 112

繁體中文

早產兒因為器官發育不成熟，有較高的合併症及死亡率，使其父母在充滿醫療的不確定性與無力感之中，進而對個人的身心健康及全家人的生活造成諸多負面的影響。本文個案為一位極低出生體重908公克的早產兒，一開始生命徵象不穩定，而後合併四度腦室出血，造成腦萎縮及腦室擴大，有極高的機率導致腦性麻痺及認知障礙。個案不僅未來需依賴他人照顧，亦可能造成家人沉重的身、心及經濟負擔。案父母在面對個案的不良預後，陷入放棄與積極救治的現實與倫理兩難，造成極大的壓力及睡眠問題。在醫療決策過程中，案父母與臨床醫護人員對個案病況與治療的認知不同，亦導致醫病關係緊張。筆者運用FOCUS家庭介入措施（FOCUS family intervention），提供以家庭為中心的支持性照護，在家庭方面：增進家庭參與、正向態度、有效的壓力因應方式、降低不確定感及負面評價；在個案方面：給予症狀處理，減少個案異常的肌肉張力及發展遲緩，使案父母在面對疾病的過程中改善因面對孩子疾病與預期照顧壓力的負向情緒、失眠症狀、失衡的家庭關係及生活品質，使個案能增進自我調節能力、減緩異常的神經發展。期望此照護經驗，提供臨床護理人員照顧有腦部損傷早產兒及其家庭之參考。

Preterm infants face increased rates of mortality and developmental complications, which are a burden on children's parents (and caregivers), who suffer from exhaustion and situational uncertainty. This case focused on an extremely-low-birth-weight (908 gm) premature infant with initial unstable vital signs complicated by a grade 4 intraventricular hemorrhage (IVH) that led to partial brain atrophy and enlarged brain ventricles. A poor neurological outcome was expected due to the high risk of cerebral palsy and impaired cognitive abilities. Long-term healthcare for this critical infant was causing tremendous physical, emotional, and financial strains on the family. The parents suffered from worries over the poor prognosis, resulting in stress, sleep disorders, and relationship difficulties with the healthcare professionals. Considering the poor prognosis of the infant, the parents faced a medical dilemma between choosing aggressive treatment and withdrawal of treatment, which led to stress and sleep disorders. Differences between the parents and health professionals regarding disease severity perception and treatment opinions further strained their mutual relationship. To ameliorate this issue, the author implemented family-centered care (the FOCUS family intervention) to help the patient and his family. This intervention is designed to increase family involvement, foster an optimistic attitude and effective stress coping techniques, and reduce uncertainty and negative emotions. For the patient, we provided symptom-relief management to improve abnormal muscle tone and development delay. Our intervention ameliorated the negative emotions, insomnia symptoms, and imbalanced family relationships and improved the life quality of the caregivers. Furthermore, the intervention enhanced the patient's autoregulatory ability, and both physical and neurological development. This case study is expected to provide experience in critical care for premature infants with a poor prognosis and their family using a FOCUS family intervention as well as to improve the quality of healthcare delivery in intensive clinical settings.

1. 王淯汶, Y. W.,張瑩如, Y. J.(2015)。發展性照護之理論發展與研究趨勢。護理雜誌，62(5)，89-95。
   連結：
2. 翁敏雪, M. H.,周弘傑, H. C.(2016)。父母於早產兒住院期間的親職議題及護理。護理雜誌，63(6)，114-119。
   連結：
3. 郭軒如, H. J.,張馨元, S. Y.,孫秀卿, S. C.(2017)。運用FOCUS家庭介入措施於大腸直腸癌末期病人及其配偶之照護經驗。護理雜誌，64(3)，98-104。
   連結：
4. Als, H.(1986).A synactive model of neonatal behavioral organization: Framework for the assessment of neurobehavioral development in the premature infant and for support of infants and parents in the neonatal intensive care environment.Physical and Occupational Therapy in Pediatrics,6(3/4),3-53.
5. Altimier, L.,Kenner, C.,Damus, K.(2015).The wee care neuroprotective NICU program (wee care): The effect of a comprehensive developmental care training program on seven neuroprotective core measures for family-centered developmental care of premature neonates.Newborn and Infant Nursing Reviews,15(1),6-16.
6. Amorim, M.,Silva, S.,Kelly-Irving, M.,Alves, E. J.(2018).Quality of life among parents of preterm infants: A scoping review.Quality of Life Research,27(5),1119-1131.
7. Calisici, E.,Eras, Z.,Oncel, M. Y.,Oguz, S. S.,Gokce, İ. K.,Dilmen, U.(2015).Neurodevelopmental outcomes of premature infants with severe intraventricular hemorrhage.The Journal of Maternal-Fetal & Neonatal Medicine,28(17),2115-2120.
8. Dorner, R. A.,Burton, V. J.,Allen, M. C.,Robinson, S.,Soares, B. P.(2018).Preterm neuroimaging and neurodevelopmental outcome: A focus on intraventricular hemorrhage, post-hemorrhagic hydrocephalus, and associated brain injury.Journal of Perinatology,38(11),1431-1443.
9. Lazarus, R. S.,Folkman, S.(1984).Stress, appraisal, and coping.New York, NY:Springer.
10. McCubbin, H. I.(Ed.),Thompson, A. I.(Ed.),McCubbin, M. A.(Ed.)(1996).Family assessment: Resiliency, coping, and adaptation-Inventories for research and practice.Madison, WI:University of Wisconsin.
11. Northouse, L.,Kershaw, T.,Mood, D.,Schafenacker, A.(2005).Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers.Psych-Oncology,14(6),478-491.
12. Novak, I.,Morgan, C.,Adde, L.,Blackman, J.,Boyd, R. N.,Brunstrom-Hernandez, J.,Badawi, N.(2017).Early, accurate diagnosis and early intervention in cerebral palsy: Advances in diagnosis and treatment.JAMA Pediatrics,171(9),897-907.
13. Perlman J. M.(2017).Intraventricular hemorrhage in the premature infant.Common neurosurgical conditions in the pediatric practice,New York, NY:
14. Spittle, A.,Orton, J.,Anderson, P. J.,Boyd, R.,Doyle, L. W.(2015).Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants.Cochrane Database of Systematic Reviews,11,Art. No.: CD005495.
15. 洪筱瑩, H. Y.,黃美智, M. C.(2014)。同意與贊同—青少年接受骨髓移植之倫理考量。護理雜誌，61(4)，83-89。

1. 李月雲,余培筠(2023)。運用FOCUS家庭介入措施於腦軟化早產兒及其家庭之照護經驗。領導護理，24(3)，123-138。