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成人唇腭裂患者的成长叙事:与心理调适相关的因素

Adults' Narratives of Growing up With a Cleft Lip and/or Palate: Factors Associated With Psychological Adjustment.

作者信息

Stock Nicola Marie, Feragen Kristin Billaud, Rumsey Nichola

出版信息

Cleft Palate Craniofac J. 2016 Mar;53(2):222-39. doi: 10.1597/14-269. Epub 2015 Feb 4.

Abstract

Background Growing up with a cleft lip and/or palate presents a number of challenges for those affected and their families. Understanding why some individuals cope well while others struggle is key to psychological research in this field. A better appreciation of the factors and processes that contribute to psychological adjustment to cleft lip and/or palate (CL/P) from the patient perspective would be of value to both researchers and clinicians. Design Qualitative data elicited from individual interviews with 52 adults born with CL/P. Results Inductive thematic analysis identified three main themes: "background" factors (age, gender, sexual orientation, culture, additional conditions, socioeconomic status, and adoption), "external" factors (treatment autonomy, familial coping and support, salience, public understanding, psychological input, and peer support), and "internal" psychological factors (perceptions of difference, noticeability and teasing, social confidence, internalization of beauty ideals, valence, expectations of treatment, responding to challenges, social comparisons, acceptance, faith, dispositional style, and recognition of strengths and positive growth). Conclusions The number and breadth of factors identified in this study are testament to the importance of psychology in the field of CL/P and may offer guidance in relation to developing and assessing the value of psychological interventions. There is a clear role for psychologists in tackling appearance-related concerns, designing materials, supporting patient decision making, and improving social interaction, as well as providing specialist psychological support. The findings illustrate the potential degree of individual variation in perspectives and offer insight into the conflicting results found within current literature.

摘要

背景 唇腭裂患者在成长过程中会面临诸多挑战,对患者及其家庭来说都是如此。了解为何有些人能很好地应对而有些人却苦苦挣扎,是该领域心理学研究的关键所在。从患者角度更好地理解那些有助于心理适应唇腭裂(CL/P)的因素和过程,对研究人员和临床医生都具有重要价值。

设计 通过对52名成年唇腭裂患者进行个体访谈获取定性数据。

结果 归纳主题分析确定了三个主要主题:“背景”因素(年龄、性别、性取向、文化、其他病症、社会经济地位和收养情况)、“外部”因素(治疗自主权、家庭应对与支持、显著性、公众理解、心理干预投入和同伴支持)以及“内部”心理因素(对差异的认知、受关注程度与被取笑情况、社交信心、美的理想观念内化、效价、对治疗的期望、应对挑战、社会比较、接纳、信念、性格风格以及对自身优势和积极成长的认知)。

结论 本研究确定的因素数量和广度证明了心理学在唇腭裂领域的重要性,并可能为制定和评估心理干预措施的价值提供指导。心理学家在解决与外貌相关的问题、设计材料、支持患者决策、改善社交互动以及提供专业心理支持方面可发挥明确作用。研究结果说明了个体观点的潜在差异程度,并为当前文献中相互矛盾的结果提供了见解。

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