Background Performing a paid job is one of the elements of participation possibly limited by having Systemic Sclerosis (SSc). Nearly all studies done so far have focused on prevalence rates of work participation and related factors. For development of interventions, we need a more comprehensive view on this topic with focus on the experiences and perceptions of patients. We need to know from a patient' s point of view which factors influence their occupational trajectory.
Objectives To describe, from a patients point of view, the factors and their related meaning, influencing the occupational trajectory of patients with SSc.
Methods Data were collected through semi-structured interviews with fourteen patients who fulfilled the ACR and/or Leroy/Medsger criteria for SSc.
Results The occupational trajectory of patients with SSc is influenced by the continuous interplay between four groups of factors. The first group concerns values patients attribute to work (identity, normality, financial value, social contact and structure). The meaning of those values and how they relate to each other steers the willingness to work. A second group of factors concerns aspects influencing the match between daily life, work participation and medical condition (job content; organizational flexibility and willingness to ask for adaptations; management of daily life; work-related micro-environment; medical treatment and treatment expectations). The occupational trajectory is also influenced by a third group of factors, comprising external factors (availability of support; knowledge of the disease; pressure to work; contact with medical professionals; existing regulations and the patient's knowledge about it). Lastly, personal factors are important (socio-demographics, psychological assets and disease-related/work-related personal factors).
Conclusions The decisions patients take concerning work depend on an interplay of factors and especially on the personal interpretation a patient gives to them. It is important that these insights are taken into account when guiding patients in their occupational trajectory.
Disclosure of Interest S. Decuman Grant/research support: This work is supported by a grant from the “Rotary-National Association to support Disabled People (NVSG)” and “Belgium Fund for Scientific Research in Rheumatology” to DS., V. Smith: None declared, M. Grypdonck: None declared, S. Verhaeghe: None declared, F. De Keyser: None declared