"All Eyes on Me": A Qualitative Study of Parent and Patient Experiences of Multidisciplinary Care in Craniofacial Conditions
"All Eyes on Me": A Qualitative Study of Parent and Patient Experiences of Multidisciplinary Care in Craniofacial Conditions
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DOI：
10.1177/1055665619842730
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发表时间：
2019-10-01
期刊：
影响因子：
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通讯作者：
Feragen, Kristin Billaud
中科院分区：
文献类型：
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作者：
Myhre, Anita;Agai, Mehri;Feragen, Kristin Billaud
目的：本研究调查了患有先天性颅面畸形（CFA）的成年人及其父母如何经历多学科团队（MDT）提供的长期复杂治疗。设计：基于个体半结构化访谈的探索性描述性定性研究。设定：由一个多学科的颅面团队对CFA进行集中的国家随访和治疗，从该团队中系统地招募参与者。参与者：样本包括48名CFA儿童的父母和16名CFA成人（N = 64）。结果：总体而言，参与者对MDT的随访和治疗表示满意。尽管如此，治疗的某些方面仍然被认为是要求很高的，例如在咨询期间有大量的卫生专业人员在场，并成为他们仔细检查的对象。卫生专业人员的沟通技巧被描述为参与者参与治疗和对治疗满意度的核心。参与者还表示需要更多关于未来治疗的治疗相关信息。结论：研究结果可能对父母和罕见CFA患者的护理组织产生影响。MDT的许多优点也为患者和父母带来了需要解决的独特挑战。患者和家属应准备好与MDT的首次协商。卫生专业人员在与患者互动时应了解自己的沟通方式，并了解治疗相关经验和期望的个体差异和需求。
Objective: The present study investigated how adults with congenital craniofacial anomalies (CFAs) and parents experience the long-term and complex treatment offered by a multidisciplinary team (MDT). Design: Exploratory-descriptive qualitative study based on individual semistructured interviews. Setting: Centralized national follow-up and treatment of CFAs by a multidisciplinary craniofacial team from which participants were systematically recruited. Participants: The sample included 48 parents of children with CFAs and 16 adults with CFAs (N = 64). Results: In general, participants reported to be satisfied with the follow-up and treatment they received from the MDT. Still, some aspects of treatment were experienced as demanding such as the large number of health professionals present during the consultation and being the object of their scrutinizing attention. Health professionals' communication skills were described as central for participants' involvement in, and satisfaction with, treatment. Participants also expressed a need for more treatment-related information regarding future treatment. Conclusions: Findings could have implications for the organization of care for parents and patients with rare CFAs. The many advantages of MDTs also create unique challenges for patients and parents that need to be addressed. Patients and families should be prepared for the first consultation with the MDT. Health professionals should be aware of their communication style when interacting with patients and be aware of individual differences and needs regarding treatment-related experiences and expectations.