Patients with systemic sclerosis face many physical, emotional struggles
Patients with systemic sclerosis live with significant physical and social limitations that are damaging to their self-image and identity, and may have diminished confidence in the care they are receiving for their condition, according to results.
Researchers recruited 30 adult patients with limited cutaneous or diffuse SSc from Liverpool Hospital in Sydney or from a support group called Scleroderma New South Wales. Researchers interviewed participants in person, either at their homes or at hospital clinics, between June and September 2015. Demographic and clinical characteristics were also acquired through patient self-report.
Researchers found six themes: bodily malfunction; lack of ability to function socially; disintegration of identity; insecurity of care; avoiding the sick role; and perseverance and hope.
Bodily malfunction was cited by participants as severe and unremitting pain that was also emotionally exhausting. Patients described debilitating physical changes, having to give up valued activities, physical dependency on others and persistent fatigue.
Deprivation of social function was described as loss of job or work hours due to illness, social isolation, and loss of valued social roles or friendships.
Disintegration of identity, another theme that emerged from the interviews, was described as embarrassing physical changes, feeling “not like themselves” in light of these changes, loss of hope and optimism, waning of job or social opportunities, feeling of isolation and helplessness, and lack of empathy from others due to external “invisibility of illness.”
Insecurity of care involved a sense that SSc is not known by members of the public or some health care providers. This perception leads patients to lose confidence in the care they are receiving for SSc.
They also reported information insufficiency, such that they felt confused about details of their own condition, as well as a desire for reassurance from providers. Resignation to a lack of adequate treatments was another issue described within the “insecurity of care” theme, as was fear of disease progression.
The theme of avoiding the sick role was focused on a refusal to self-identify as “sick,” avoiding thinking about the illness, or avoiding discussion of it with family or friends, in part as an effort to “protect” loved ones.
Perseverance and hope was an empowering theme identified by participants. This theme involves optimism about treatment, taking charge of one’s own health and overcoming illness through support systems.
“For patients with SSc, their identity and social selves are impaired by bodily constraints, volatile symptoms and functional deterioration,” the researchers wrote. “Health care providers often present nihilistic attitudes that do not promote patient education and that fail to recognize the important concerns of these patients, which in turn leads to a lack of confidence in providers, along with anxiety and skepticism about treatment.” -by Jennifer Byrne
Disclosures: The authors report no relevant disclosures.