School of Medicine, Division of General Practice, University of Western Australia, 35 Stirling Highway, Crawley, Perth, WA, 6009, Australia.
Department of Nursing, Midwifery and Health, School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK.
BMC Neurol. 2021 Aug 13;21(1):315. doi: 10.1186/s12883-021-02338-x.
Levels of self-reported health do not always correlate with levels of physical disability in stroke survivors. We aimed to explore what underlies the difference between subjective self-reported health and objectively measured disability among stroke survivors.
Face to face semi-structured interviews were conducted with stroke survivors recruited from a stroke clinic or rehabilitation ward in the UK. Fifteen stroke survivors purposively sampled from the clinic who had discordant self-rated health and levels of disability i.e. reported health as 'excellent' or 'good' despite significant physical disability (eight), or as 'fair' or 'poor' despite minimal disability (seven) were compared to each other, and to a control group of 13 stroke survivors with concordant self-rated health and disability levels. Interviews were conducted 4 to 6 months after stroke and data analysed using the constant comparative method informed by Albrecht and Devlieger's concept of 'disability paradox'.
Individuals with 'excellent' or 'good' self-rated health reported a sense of self-reliance and control over their bodies, focussed on their physical rehabilitation and lifestyle changes and reported few bodily and post-stroke symptoms regardless of level of disability. They also frequently described a positive affect and optimism towards recovery. Some, especially those with 'good' self-rated health and significant disability also found meaning from their stroke, reporting a spiritual outlook including practicing daily gratitude and acceptance of limitations. Individuals with minimal disability reporting 'fair' or 'poor' self-rated health on the other hand frequently referred to their post-stroke physical symptoms and comorbidities and indicated anxiety about future recovery. These differences in psychological outlook clustered with differences in perception of relational and social context including support offered by family and healthcare professionals.
The disability paradox may be illuminated by patterns of individual attributes and relational dynamics observed among stroke survivors. Harnessing these wider understandings can inform new models of post-stroke care for evaluation.
在脑卒中幸存者中，自我报告的健康水平并不总是与身体残疾水平相关。我们旨在探索脑卒中幸存者中主观自我报告的健康与客观测量的残疾之间存在差异的原因。
在英国的一家脑卒中诊所或康复病房招募脑卒中幸存者进行面对面的半结构化访谈。从诊所中选择了 15 名自我报告健康状况和残疾程度不一致的脑卒中幸存者进行有针对性的抽样，即尽管存在明显的身体残疾（8 名），但报告的健康状况为“优秀”或“良好”，或者尽管残疾程度最小（7 名），但报告的健康状况为“一般”或“差”，将他们彼此进行比较，并与 13 名自我报告健康状况和残疾程度一致的脑卒中幸存者进行比较。访谈在脑卒中后 4 至 6 个月进行，使用基于 Albrecht 和 Devlieger 的“残疾悖论”概念的不断比较方法进行数据分析。
自我报告健康状况为“优秀”或“良好”的个体报告了对自己身体的自力更生和控制感，专注于身体康复和生活方式的改变，无论残疾程度如何，报告的身体和脑卒中后症状都很少。他们还经常描述对康复的积极态度和乐观情绪。有些人，尤其是那些自我报告健康状况良好且有明显残疾的人，也从脑卒中中找到了意义，报告了一种精神展望，包括每天感恩和接受限制。另一方面，自我报告健康状况为“一般”或“差”，残疾程度最小的个体经常提到脑卒中后的身体症状和合并症，并对未来的康复感到焦虑。这些心理观点的差异与对关系和社会背景的感知差异相关，包括家庭和医疗保健专业人员提供的支持。
脑卒中幸存者的个体属性和关系动态模式可以说明“残疾悖论”。利用这些更广泛的理解可以为新的脑卒中后护理模型提供信息，以便进行评估。
