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促进南非不同文化背景家庭参与腭裂治疗团队

Facilitating cleft palate team participation of culturally diverse families in South Africa.

作者信息

Louw Brenda, Shibambu Mary, Roemer Karin

机构信息

Department of Communication Pathology, University of Pretoria, Pretoria, South Africa.

出版信息

Cleft Palate Craniofac J. 2006 Jan;43(1):47-54. doi: 10.1597/04-023.1.

DOI:10.1597/04-023.1
PMID:16405374
Abstract

OBJECTIVE

The Facial Cleft Deformities Clinic, University of Pretoria, Pretoria, South Africa, provides interdisciplinary team services to patients with cleft lip and palate and craniofacial anomalies. They represent the "rainbow nation" of South Africa and reflect the multicultural and multilingual nature of the population, which poses a challenge to effective and accountable service delivery. The aim of this study was to explore some cultural variations that exist in black families that influence their participation in the team approach and to describe the assets of families that may be used to empower them and to enhance service delivery.

DESIGN

A descriptive survey research design. A questionnaire-by-interview procedure was utilized during routine visits of 35 black families to the Facial Cleft Deformities Clinic.

RESULTS

The results are discussed from an ethnographic perspective of the family and describe the knowledge base of the participants, the diagnosis and treatment of the children's cleft lip and palate, family structure and support systems, family income and education, and the geographical distribution of the participants. Implications for building family partnerships and for improving professionals' cultural competence in order to improve the quality of service delivery are presented.

CONCLUSIONS

By viewing cultural differences on a continuum, following the asset-based approach, applying knowledge based on contextually relevant research, and recognizing family uniqueness, families may be empowered to participate fully in the team approach to support their children with cleft lip and palate and craniofacial anomalies in attaining their full potential in the South African context.

摘要

目的

南非比勒陀利亚大学面部裂畸形诊所为唇腭裂及颅面畸形患者提供跨学科团队服务。他们代表了南非的“彩虹之国”,反映了当地人口的多元文化和多语言特性,这对有效且负责地提供服务构成了挑战。本研究的目的是探索黑人家庭中存在的一些文化差异,这些差异会影响他们对团队治疗方法的参与度,并描述家庭中可用于增强他们的能力及改善服务提供的有利因素。

设计

描述性调查研究设计。在35个黑人家庭到面部裂畸形诊所进行常规就诊期间,采用了访谈式问卷调查程序。

结果

从家庭的人种学角度对结果进行了讨论,描述了参与者的知识基础、儿童唇腭裂的诊断和治疗、家庭结构和支持系统、家庭收入和教育情况以及参与者的地理分布。提出了建立家庭伙伴关系以及提高专业人员文化能力以改善服务提供质量的相关启示。

结论

通过从连续统一体的角度看待文化差异,遵循基于资产的方法,应用基于上下文相关研究的知识,并认识到家庭的独特性,可以使家庭有能力充分参与团队治疗方法中,以支持他们患有唇腭裂及颅面畸形的孩子在南非背景下充分发挥其潜力。

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Cleft Palate Craniofac J. 2006 Jan;43(1):47-54. doi: 10.1597/04-023.1.
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Medical genetics on the cleft palate-craniofacial team: understanding parental preference.腭裂-颅面治疗团队中的医学遗传学:理解父母的偏好。
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"People look and ask lots of questions": caregivers' perceptions of healthcare provision and support for children born with cleft lip and palate.“人们会观察并提出很多问题”:照顾者对唇腭裂患儿医疗服务和支持的看法。
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Coproduction in the management of individuals with cleft lip and palate in South Africa: the Ekhaya Lethu model.南非唇腭裂患者管理中的共同生产:埃卡亚·莱图模式
Int J Qual Health Care. 2021 Nov 29;33(Supplement_2):ii33-ii39. doi: 10.1093/intqhc/mzab082.
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Parameters for evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies. American Cleft Palate-Craniofacial Association. March, 1993.唇腭裂或其他颅面畸形患者的评估与治疗参数。美国腭裂-颅面协会。1993年3月。
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South African speech-language therapists' opinion of their training in cleft lip and palate and craniofacial deformities.南非言语治疗师对其在唇腭裂和颅面畸形方面的培训的看法。
S Afr J Commun Disord. 2020 Jul 30;67(1):e1-e6. doi: 10.4102/sajcd.v67i1.695.
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Center of cleft lip-cleft palate and craniofacial deformities, Khon Kaen University in association with "Tawanchai Project" and Faculty of Medicine, Khon Kaen University.孔敬大学唇腭裂与颅面畸形中心,与“Tawanchai项目”及孔敬大学医学院合作。
J Med Assoc Thai. 2014 Oct;97 Suppl 10:vi.
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Parents' attitudes toward family involvement in cleft palate treatment.父母对家庭参与腭裂治疗的态度。
Cleft Palate Craniofac J. 1993 Jan;30(1):87-9. doi: 10.1597/1545-1569_1993_030_0087_patfii_2.3.co_2.

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