Background Systemic Sclerosis (SSc) is a severe autoimmune connective tissue disorder primarily characterized by skin changes, damage to internal organs and the presence of Raynaud phenomenon. The clinical manifestations have an impact on the level of participation, including the ability to work. The last years there is increasing research about prevalence of work transitions in patients with SSc. Studies are mainly focused on assessing patients by structured interviews, questionnaires, clinical examination, and other methods. The knowledge generated is not sufficient to get insight in the meaning of work transitions and their potential predictors or causes. A more patient oriented approach can be helpful to assess the patient’s perspective and develop more adequate interventions.
Objectives The aim of this study is to explore the meaning of work in patients with SSc. Factors influencing this meaning are explored.
Methods The aims of the research require a qualitative approach. Semi-structured interviews are used for data collection. The interviews are transcribed and analyzed using the constant comparison method. NVIVO9© is used for coding the data. To advance interpretative analysis, a cyclic process of data collection and data-analysis is used. For this analysis, till now, twelve patients have been interviewed. Researcher triangulation is used to increase the validity of the analyses.
Results Working entails a financial benefit allowing patients to have a certain degree of independence. Working also offers structure in life. Moreover employees pursue normality by performing a job and they consider it as an expression of their citizenship. Working gives patients the opportunity to develop their identity and offers them the possibility to socialize. The meaning of work is influenced among other by education, individuality of the patient, severity of the disease, age, duration of sick leave, years being in the labor force and content of the job. The meaning people give to working influences the actions they take and the decisions they make concerning work.
Conclusions Being able to work has different meanings. Moreover these meanings are influenced by diverse factors and determine the actions patients take and the decisions they make. Till now the results are preliminary but they generate new ideas about the problem of work participation in patients with SSc. This study can initiate the development of a different kind/type of interventions.
Disclosure of Interest None Declared