Experiences of physical activity and exercise in individuals with systemic sclerosis: A qualitative study

Abstract

Introduction: Exercise is emerging as an important part of the treatment in systemic sclerosis-patients with no-mild lung involvement. However, it has not been studied how patients experience physical activity and exercises. We thus explored and described experiences of physical activity/exercises in systemic sclerosis-individuals.Method: Sixteen systemic sclerosis-patients were purposefully recruited to represent variation in gender, age, and lung disease. Semi-structured individual interviews were performed, transcribed and analyzed with qualitative content analysis.Results: Three themes (categories) emerged: 1) Essential for life and health (An effective treatment, Reduces fear of deterioration, and Feeling healthy and satisfied with oneself); 2) Disease-related hinders and other barriers (Disease consequences, Risk of worsening, and Non-disease related barriers); and 3) Self-care and/or support (Self-confidence in physical activity/exercise, and, Education and support from healthcare and other).Conclusions: Physical activity/exercises were experienced as essential for life and health and as an effective treatment. It reduced fear of deterioration and made the participants feel healthy and satisfied with oneself. However, participants also experienced disease-related barriers like shortness of breath and pain, and they expressed a risk of worsening. Participants felt confidence in their physical activity/exercises and expressed that education and support from healthcare could be facilitating. Our findings add new knowledge about how systemic sclerosis-patients perceive physical activity/exercise and can contribute to the development of patient education and PA/exercise programs. K E Y W O R D S exercise, interview, qualitative research

The Preventive Role of Physical Activity in Systemic Sclerosis: A Cross-Sectional Study on the Correlation with Clinical Parameters and Disease Progression

“…The present study has some limitations. First, SSc is a rare disease, and—similar to other studies [ 39 , 68 , 69 ]—our sample size was small. An increase in the sample size might bring out other significant differences among the parameters observed in this study.…”

Validity and reliability of the Patient Health Questionnaire-8 in Swedish for individuals with systemic sclerosis

“…Items that were suggested for inclusion in the PHQ-8 Swe involved meaning of life, demanding situations for mental health, and self-management strategies. Psychosocial support [ 42 ] and support for self-management strategies such as physical exercise are important to these patients [ 44 ]. However, the PHQ-8 consists of criteria for depression, and it would be problematic to include items beyond these criteria.…”

‘It's just not the same… I am just a spectator’: A qualitative study on changes in leisure participation experienced by people with scleroderma

“…In studies examining the subjective experiences of living with scleroderma, people described the emotional and physical challenges that affected performance of daily activities (Cinar et al., 2012; Harb et al., 2022; Nakayama et al., 2016; Pettersson et al., 2020; Richards et al., 2004; Suarez‐Almazor et al., 2007; Sumptom et al., 2017). While difficulty with leisure activities was mentioned in the studies, the focus is usually on self‐care and productive daily activities such as work or home management.…”

“…In studies examining the subjective experiences of living with scleroderma, people described the emotional and physical challenges that affected performance of daily activities (Cinar et al, 2012;Harb et al, 2022;Nakayama et al, 2016;Pettersson et al, 2020;Richards et al, 2004;Suarez-Almazor et al, 2007;Sumptom et al, 2017).…”