Managing work life with systemic sclerosis

• Objective. To explore how individuals with systemic sclerosis (SSc) manage their work life. Methods. We conducted four focus group interviews which included 17 patients. The interviews were tape recorded and transcribed verbatim. The transcribed texts were analysed according to thematic content analysis. Relevant statements, that generated preliminary categories, were identified after which, themes and underlying sub-themes were generated. Results. Four themes emerged:  adaptation, strategy, communication and attitude. Flexible working hours, workplace and work assignments corresponding to the individuals’ recourses, were the most important adaptation requirements for SSc patients. Reluctance to disclose their illness was the most prominent reason for not requesting adaptations. Strategies to facilitate working at home, such as receiving assistance with household chores as well as buying in cleaning services were easy to realize and saved energy for meaningful activities. The participants tried to prioritize meaningful activities rather than spending energy on unnecessary activities both at work and outside of work. Fatigue influenced activities at work but mostly outside of work and to manage their working life the participants were dependent of having time for recovery, above all rest.Conclusion. The ability to develop adaptations and strategies, to a great extent, depends on the individual’s understanding and acceptance of their disease, awareness and respect for their own needs for meaningful activities and an ability to communicate this at work and outside of work. As health professionals we should enhance the confidence of persons with SSc to strengthen their ability to bring about the necessary dialogue.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Reumatologi och inflammation (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Rheumatology and Autoimmunity (hsv//eng)

Nyckelord

work

systemic sclerosis

adaptation

workplace

daily life activities

Publikations- och innehållstyp

ref (ämneskategori)

art (ämneskategori)