Decuman Saskia, Smith Vanessa, Grypdonck Maria, De Keyser Filip, Verhaeghe Sofie
Faculty of Medicine and Health Sciences, Department of Internal Medicine, Ghent University; and Department of Rheumatology, Ghent University Hospital, Belgium.
Department of Rheumatology, Ghent University Hospital, Belgium.
Clin Exp Rheumatol. 2015 Jul-Aug;33(4 Suppl 91):S26-30. Epub 2015 Mar 20.
To describe, from the patient's point of view, the factors influencing the occupational trajectory of patients with systemic sclerosis (SSc).
This was a qualitative study designed using grounded theory with constant comparison. Data were collected through semi-structured interviews with 14 patients who fulfilled the American College of Rheumatology or Leroy-Medsger criteria for SSc.
Based on our interviews, we found that the occupational trajectory of patients with SSc is influenced by the continuous interplay between four groups of factors. The first group concerns the values patients attribute to work, including identity, normality, financial value, social contact, and structure. The meaning of these values and how they relate to each other underlies the desire to work. A second group of factors is those influencing the balance between daily life, work participation, and medical condition (e.g. job content, flexibility in organising work, and the willingness to ask for accommodations at work). The occupational trajectory is also influenced by external factors, including availability of support, know-ledge of the disease, pressure to work, contact with medical professionals, and existing regulations and the patient's knowledge about them. Finally, the occupational trajectory is influenced by personal factors, including socio-demographics, psychological assets, and disease- and work-related personal factors.
The decisions patients with SSc take concerning work depend on an interplay between many factors and, especially, on the patients' personal interpretation of these factors. These need to be taken into account when helping patients with SSc determine their occupational trajectory.
从患者角度描述影响系统性硬化症（SSc）患者职业轨迹的因素。
这是一项采用扎根理论和持续比较法设计的定性研究。通过对14名符合美国风湿病学会或勒罗伊 - 梅兹格SSc标准的患者进行半结构化访谈收集数据。
基于我们的访谈，我们发现SSc患者的职业轨迹受到四组因素之间持续相互作用的影响。第一组因素涉及患者赋予工作的价值观，包括身份认同、正常状态、经济价值、社会交往和结构。这些价值观的含义以及它们之间的相互关系构成了工作愿望的基础。第二组因素是那些影响日常生活、工作参与和健康状况之间平衡的因素（例如工作内容、工作安排的灵活性以及在工作中要求便利的意愿）。职业轨迹还受到外部因素的影响，包括支持的可获得性、对疾病的了解、工作压力、与医疗专业人员的接触以及现有法规和患者对其的了解。最后，职业轨迹受到个人因素的影响，包括社会人口统计学、心理资产以及与疾病和工作相关的个人因素。
SSc患者关于工作的决策取决于多种因素之间的相互作用，尤其是患者对这些因素的个人解读。在帮助SSc患者确定其职业轨迹时需要考虑这些因素。
