Problematic Social Support From Patients’ Perspective: The Case of Systemic Lupus Erythematosus

Abstract

Several studies demonstrated the importance of psychosocial factors, like social support, for understanding the experience of people with Systemic Lupus Erythematosus (SLE). Less information is available on “problematic support”; that is, instances of support that are perceived as non-supportive, even though the provider’s actions may be well intended. Aim of this qualitative study was to explore the experiences of problematic support from SLE patients’ perspective. Nine women with SLE were interviewed and transcripts were analyzed through qualitative content analysis. Three main types of problematic social support were indentified. Oppressive support describes social support offers characterized by excessive worries and unwanted advices. Support denying the illness is characterized by a neglect of the disease or of its consequences. Support based on divergent illness representations is perceived as not punctual and not in line with patients’ actual clinical condition. This study confirms the complexity of providing useful support to SLE patients and suggest that also people living close to patients should represent a target of interventions.

KEYWORDS:

• Systemic Lupus Erythematosus
• social support
• qualitative research
• quality of life

ACKNOWLEDGMENTS

We thank all the participants.

FUNDING

The study was supported by Lupus-Italy (research project “Living better with SLE: a psychosocial perspective”).