The Effect of a Self-Management Program on Individuals With Scleroderma
Condition: Scleroderma; Systemic Sclerosis
MeSH terms: Scleroderma, Systemic; Scleroderma, Diffuse; Sclerosis
Study type: Interventional

Summary: 
      Introduction: Individuals with systemic sclerosis (SSc) have problems with perceived
      occupational performance and satisfaction in daily life activities due to many symptoms
      caused by the disease.

      Purpose: This study will plan to examine the effect of a self-management program for
      individuals with SSc on perceived occupational performance and satisfaction.

      Materials and Methods : Twenty-nine individuals with SSC, 28 females and 1 male will
      participate in the study. Perceived occupational performance and satisfaction levels before
      and after the program will evaluate with the Canadian Ocupational Performance Measure (COPM).
      The training programme will design according to the activities of COPM, the needs of the
      patients, and the literature. The programme consists of 8 sessions for 8 weeks, 1 day a week
      for 45 minutes.
    

Detailed description: 
      In this study, 36 individuals, diagnosed with scleroderma by a rheumatologist at Gazi
      University, were included. In the study approved by the Gazi University Clinical Research
      Ethics Committee (21.09.2020, Decree No: 635) and planned by the Declaration of Helsinki,
      consent forms were sent to all participants to confirm that they were volunteers. Demographic
      information of the individuals was obtained. The Canadian Occupational Performance Measure
      (COPM) was used to identify occupational problems and to implement a person-centered program.
      This information was obtained by submitting online forms. The videos were prepared by a team
      of physiotherapists, occupational therapists, and rheumatology doctors. The program manager
      was an occupational therapist. 29 people completed the 8-week program, which included 40-50
      minute videos and assignments (keeping a pain diary, creating an exercise routine, etc.). At
      the end of the program, individuals were reminded of the difficult occupations again so that
      the Canadian Occupational Performance Measure could be re-scored. Initially, the open-ended
      question "In which ways did the program contribute to you?" was asked. Individuals were
      evaluated in the first and last week of the program and the results were compared. These
      evaluations and interventions were made during the Covid-19 pandemic.
    

Intervention name(s): Self Management Intervention Program
Intervention type(s): Behavioral
Intervention description(s): SSc, the course of the disease, symptoms and coping strategies, medications and treatment methods? The importance of exercise for individuals with SSc, and how to create an action plan for an exercise? were discussed. What are fatigue and its symptoms? How can we protect our articular-energy and how should a quality rest be? What is pain and what are coping approaches? What is the pain-related area of influence? What are body image problems, how to use problem solving approach and what is its importance? What is Stress? What is mindfulness? What are mindfulness exercises? What are the ways to cope with stress? What are the daily life occupations and how can we facilitate them? How can we solve problems in difficult occupations? How to create an occupation plan to facilitate daily occupations? What are oral stretching exercises and how to do them? What are the factors affecting sleep? What is advocacy and why is it important? Answers to these questions were sought.
Allocation: Non-Randomized
Intervention model: Single Group Assignment
Masking: Single (Outcomes Assessor)
Primary purpose: Treatment