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脑瘫患儿髋关节重建和脊柱融合术后家长照顾者的期望与满意度

Parental Caregiver Expectations and Satisfaction Following Hip Reconstruction and Spinal Fusion in Children With Cerebral Palsy.

作者信息

Geyer David, Vessey Judith A, Chen Anna, DiFazio Rachel L

机构信息

David Geyer, MSN, RN, William F. Connell School of Nursing, Boston College, Chestnut Hill, MA.

Judith A. Vessey, PhD, MBA, RN, FAAN, William F. Connell School of Nursing, Boston College, Chestnut Hill, MA; and Medical, Surgical and Behavioral Health Programs, Boston Children's Hospital, Boston, MA.

出版信息

Orthop Nurs. 2023;42(2):94-102. doi: 10.1097/NOR.0000000000000928.

DOI:10.1097/NOR.0000000000000928
PMID:36944203
Abstract

Children with severe (Gross Motor Function Classification System [GMFCS] IV-V) cerebral palsy (CP) exhibit profound physical and developmental impairments and require assistance for all activities of daily living. No curative treatments exist although surgical procedures to correct underlying hip and spine deformities can improve their quality of life. Despite the efficacy of these surgeries, little is known regarding parental caregivers' expectations specific to surgical outcomes and their satisfaction with surgical outcomes. The purpose was to explore parental caregiver expectations and satisfaction with hip and spine surgeries that their children with GMFCS IV-V CP underwent. Variations among preoperative expectations, changes in expectations over time, and the relationship of expectations on caregiver satisfaction were examined. A qualitative descriptive approach with conventional content analysis was utilized. Three preoperative caregiver expectation themes were identified: increasing functionality, increasing comfort, and maintaining health and averting crisis. These themes were still present at 5-year follow-up; however, more caregivers refocused their expectations from improving function to providing palliation. A clear relationship between expectations and caregiver satisfaction, however, was not identified. A deeper understanding surrounding caregiver expectation and satisfaction following surgical procedures is needed.

摘要

患有重度(粗大运动功能分类系统[GMFCS]IV - V级)脑瘫(CP)的儿童存在严重的身体和发育障碍,日常生活的所有活动都需要帮助。尽管不存在治愈性治疗方法,但纠正潜在的髋部和脊柱畸形的外科手术可以改善他们的生活质量。尽管这些手术有疗效,但对于父母照顾者对手术结果的具体期望以及他们对手术结果的满意度知之甚少。目的是探讨父母照顾者对其患有GMFCS IV - V级CP的孩子所接受的髋部和脊柱手术的期望和满意度。研究了术前期望的差异、期望随时间的变化以及期望与照顾者满意度之间的关系。采用了具有传统内容分析的定性描述方法。确定了三个术前照顾者期望主题:提高功能、增加舒适度以及保持健康和避免危机。这些主题在5年随访时仍然存在;然而,更多的照顾者将他们的期望从改善功能重新聚焦到提供姑息治疗。然而,并未确定期望与照顾者满意度之间的明确关系。需要更深入地了解手术后照顾者的期望和满意度。