Background SSc has a great impact on daily functioning . People with SSc make regular use of allied health care, mainly physiotherapy and occupational therapy (OT), for guidance in coping with the many consequences of the disease. Little is known about the current practice of occupational therapy for people with SSc .
Objectives The purpose of this qualitative pilot study was to map the experience of Dutch occupational therapists about their daily practice and vision on optimal SSc care through OTs.
Methods Five female OTs, median age 38.6 years (range 25–46 years) from different work settings and regions with an average work experience of 8.6 years in SSc care, were recruited through the Dutch organisation of Health Professionals in rheumatology. A semi-structured interview was conducted with each participant and transcribed verbatim. Data were analysed by the three-step method of Boeije .
Results OTs describe that in CURRENT PRACTICE patients report problems on a functional, activity and participation level, while the treatment is mostly aiming at functional level (including aids and compensations). They experience that their work is experience-based due to the lack of available evidence. The nature of interventions is significantly dependent on the phase of disease in which patients are. They experience a low number of referrals in a late state of the disease and suggest that this might be due to the lack of knowledge about occupational therapy.
In an OPTIMAL SITUATION OTs are involved earlier in the disease process and focus on training and patient needs. They would want to focus on prevention and education including the social environment of the patient. In order to offer optimal treatment they would want to work guideline-based and establish sustained treatment relationships. Earlier referral in the disease process would enable meaningful treatment. They express their need for a clear OT profile to be known by rheumatologists, to facilitate timely and appropriate referrals to OTs.
Conclusions We found a distinct difference between current and ideal OT practice. The newly gained knowledge of this study can be used by OTs for a transition from treatment addressing compensation to a treatment targeting activity and participation. More attention should be paid to timely referrals with a transparent indication.
Stamm, T., et al. (2011). Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries. Ann Rheum Dis, 70(6), 1074–1079.
Willems, L., et al. (2013). Health care use and patients' perceptions on quality of care in systemic sclerosis. Clin Exp Rheum, 64.
Boeije, H. R. (2014). Analyseren in kwalitatief onderzoek: denken en doen. Den Haag: Boom Lemma.
Disclosure of Interest None declared
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