Schakel Wouter, Bode Christina, van der Aa Hilde P A, Hulshof Carel T J, Bosmans Judith E, van Rens Gerardus H M B, van Nispen Ruth M A
Department of Ophthalmology, VU University Medical Centre and Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
Department of Psychology, Health & Technology, University of Twente, Enschede, The Netherlands.
BMJ Open. 2017 Aug 3;7(8):e015023. doi: 10.1136/bmjopen-2016-015023.
Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue, causes, consequences and coping strategies.
Two large Dutch low vision multidisciplinary rehabilitation organisations.
16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling.
A qualitative study involving semistructured interviews. A total of four first-level codes were top-down predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were analysed with a combination of a deductive and inductive approach using open and axial coding.
Participants often described the symptoms of fatigue as a mental, daily and physical experience. The most often mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high effort necessary to establish visual perception, difficulty with light intensity and negative cognitions. Fatigue had the greatest impact on the ability to carry out social roles and participation, emotional functioning and cognitive functioning. The most common coping strategies were relaxation, external support, socialising and physical exercise and the acceptance of fatigue.
Our results indicate that low vision-related fatigue is mainly caused by population specific determinants that seem different from the fatigue experience described in studies with other patient populations. Fatigue may be central to the way patients react, adapt and compensate to the consequences of vision loss. These findings indicate a need for future research aimed at interventions specifically tailored to the unique aspects of fatigue related to vision loss.
疲劳是不可逆视力损害患者经常提到的症状。本研究探讨了视力受损成年人对疲劳的看法，重点关注疲劳症状、原因、后果及应对策略。
荷兰两家大型低视力多学科康复机构。
通过目的抽样选取16名有严重疲劳症状的视力受损成年人。
一项涉及半结构式访谈的定性研究。根据研究问题的主题自上而下预先确定了总共四个一级编码。采用演绎和归纳相结合的方法，运用开放编码和轴心编码对逐字转录的访谈内容进行分析。
参与者经常将疲劳症状描述为一种精神、日常和身体体验。最常提到的疲劳原因是认知负荷高、活动强度和量、建立视觉感知所需的高努力程度、光强度困难以及消极认知。疲劳对履行社会角色和参与、情绪功能及认知功能的能力影响最大。最常见的应对策略是放松、外部支持、社交和体育锻炼以及接受疲劳。
我们的结果表明，与低视力相关的疲劳主要由特定人群的决定因素引起，这些因素似乎与其他患者群体研究中描述的疲劳体验不同。疲劳可能是患者对视力丧失后果做出反应、适应和补偿方式的核心。这些发现表明，未来需要开展研究，针对与视力丧失相关的疲劳的独特方面进行专门干预。
