School of Healthcare Sciences, College of Biomedical Sciences, Cardiff University, Cardiff, UK.
School of Psychology, Liverpool John Moores University, Liverpool John Moores University, Liverpool, UK.
Psychol Health Med. 2022 Apr;27(4):788-802. doi: 10.1080/13548506.2021.1876891. Epub 2021 Jan 25.
Evidence suggests that people with facial palsy may experience higher levels of distress, but the reasons for this are yet to be explored. This study aimed to explore people's illness beliefs, emotions, and behaviours in relation to their facial palsy and understand how distress is experienced by this group. Semi-structured individual interviews were conducted in the UK with adults with facial palsy. Interview questions were theoretically informed by the Common-Sense Self-Regulatory Model (CS-SRM). Thematic Analysis was conducted following a combined inductive and deductive approach. Twenty people with facial palsy participated (70% female; aged 29-84). Patient distress was accounted for by illness beliefs (symptoms, cause, control and treatment, timeline and consequences), and four additional themes (coping behaviours, social support, identity and health service provision). Experiences of anxiety, depression, and anger were widespread, and some participants experienced suicidal ideation. The burden of managing a long-term condition, altered self-perception, and social anxiety and isolation were key drivers of distress. There is a need for more integrated psychological support for patients with facial palsy. Within clinical consultations, patient's beliefs about facial palsy should be identified and systematically addressed. Service development should include appropriate referral to specialist psychological support via an established care pathway.
有证据表明，面瘫患者可能经历更高水平的痛苦，但产生这种情况的原因尚未得到探索。本研究旨在探讨面瘫患者的疾病信念、情绪和行为，并了解该群体是如何经历痛苦的。在英国，对成年面瘫患者进行了半结构化的个体访谈。访谈问题是根据常识自我调节模型（CS-SRM）理论得出的。采用归纳和演绎相结合的方法进行主题分析。共有 20 名面瘫患者参与（70%为女性；年龄 29-84 岁）。患者的痛苦由疾病信念（症状、原因、控制和治疗、时间线和后果）以及其他四个主题（应对行为、社会支持、身份和医疗服务提供）来解释。焦虑、抑郁和愤怒的情绪普遍存在，一些参与者甚至有自杀的念头。长期管理疾病的负担、自我认知的改变、社交焦虑和孤立是痛苦的主要驱动因素。面瘫患者需要更综合的心理支持。在临床咨询中，应识别并系统地处理患者对面瘫的信念。服务的发展应包括通过既定的护理途径，将患者适当转介到专门的心理支持服务。
