Living with scleroderma: patients’ perspectives, a phenomenological study

Abstract

In this study, it is aimed to determine the daily life experiences of patients on the basis their own way of statement. Sixteen patients with scleroderma were enrolled to this qualitative study. Data were collected using both a demographic data form and a semi-structured interview form. Study was made on individual patient interview by face-to-face manner. Data were evaluated using Colaizzi's phenomenological data analysis method. Data analysis revealed four categories and nine topics. These categories were (1) physical impact of disease, (2) emotional impact of disease, (3) social impact of disease and (4) patient behaviours for the cope with the disease. As emotional impact, patients imply that they have experienced disappointment, hope to get well and have fears about the future. In the physical impact category, tight skin, limitations of hand skills, swelling of the hands and feet, fatigue, swallowing difficulties and deformation of their bodies were the prominent features. In patients with recognizable disease, difficulty to join to social activities increases and eventually leads to isolation. There was also some evidence that patients who have been supported by their family and close relatives seem to be more optimistic about their disease. Most patients are not willing to communicate with other patients, particularly in an advanced stage. Scleroderma patients imply that they experience several difficulties regarding emotional, physical and social aspects. Individual abilities to cope with the disease were much more improved among patients who have a sustained social support. For advanced patients with apparent deformations, an effective social support system should be introduced.

Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study

“…In addition, in a study involving 63 patients from four European countries, 19 concepts were shared among SSc patients from the four countries which included among others impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits [12]. Moreover, it has recently been reported that SSc patients experience difficulties regarding emotional, physical and social aspects and that individual abilities to cope with the disease were much more improved among patients who have a sustained social support [14]. Interestingly, none of the published studies identified the patient–physician relationship as of strategic importance in the care of SSc patients.…”

Experiences and Perspectives of Adults Living With Systemic Lupus Erythematosus: Thematic Synthesis of Qualitative Studies

“…The themes we identified in this study share similarities with the experiences of patients with other connective tissue diseases that involve a number of common clinical features with SLE, including rheumatoid arthritis and systemic sclerosis. Patients with rheumatoid arthritis also experience physical restriction, difficulties in maintaining social relationships, constant anxiety about the future, and loss of independence (). In comparison, patients with SLE and systemic sclerosis typically experience more diverse disease manifestations, including arthritis, sicca symptoms, alopecia, and Raynaud's phenomenon, and this can further contribute to loss of physical, social, and emotional functioning.…”

“It's Not Me, It's Not Really Me.” Insights From Patients on Living With Systemic Sclerosis: An Interview Study

“…A recent systematic review identified 12 peer‐reviewed qualitative studies, including 380 patients, on the perspectives of patients with SSc , which found that patients face persistent uncertainties that undermine their self‐image, daily functioning, and identity. However, there are still knowledge gaps in the areas of information needs, attitudes to medications, self‐management, and support.…”