Scleroderma patient perspectives on social support from close social relationships

Abstract

Purpose:The purpose of this study was to deepen our understanding concerning the ways that social support from close relationships can impact a patients' ability to cope with scleroderma.Method: Four focus groups were conducted with patients diagnosed with scleroderma (N = 19). A semi-structured interview guide was used. Discussions were recorded and transcribed, and a thematic analysis performed.Results: Patients reported receiving three types of social support (i.e., emotional, informational, instrumental), with emotional support standing out as a priority. Patients also referred to three relational factors (i.e., communication style, active engagement, complementarity) that either enhanced or impeded the support received. More specifically, honest communication by the patients, patients' careful selection of sources of support, and close relationships motivated to learn and get involved enhanced social support. However, patients who avoided others or avoided speaking about scleroderma, people with a lack understanding, and people who do not get involved impeded support. Conclusion:Scleroderma patients might benefit from supportive interventions aimed at helping them cope better with the disease as a collective, rather than exclusively supporting patients to cope on their own. Findings from this study help better understand the unique experiences of scleroderma patients while receiving support in close relationships.

Development and validation of a patient-reported outcome in systemic sclerosis: the Hand scleroDerma lived Experience (HAnDE) scale

“…Based on our results and using the vocabulary of the participants, the research group generated 18 items (Table S2). The item generation process, along with the most relevant references, are presented in Table 3 2,3,6,26–46 …”

“…Almeida 6 B erezn e 38 Milette 39 Similarly, sexual distress among patients with SSc has never been specifically described for hand impairment but always in a more general way.…”

Measuring the impact of systemic sclerosis on oral health‐related quality of life in a UK population

“…Patients with SSc scored a significant level of impact in all scores except problems enjoying contact with others. This perhaps may be related to the benefits of perceived help and support from either relatives and friends and/or support groups 27 …”

The need for a holistic approach for SSc-ILD – achievements and ambiguity in a devastating disease

“…Patients with SSc-ILD, as do most other patients with ILD, face many challenges in coping with their disease [64]. Besides practical issues these include; lack of information and difficulties in access to specialist care, symptom burden, disease progression, the negative impacts of stress and depression [64][65][66]. We identified little evidence-based data on non-pharmacological treatment and supportive care specifically for SSc-ILD, but some studies in ILD or in SSc have also included small numbers of patients with SSc-ILD.…”

“…Causes of fatigue and depression in ILD and SSc-ILD are often multifactorial [64,65,77]. A comprehensive and structured approach is recommended both for ILDrelated symptoms as well as extrapulmonary symptoms and co-morbidities [11,77].…”