Literature DB >> 24835088

Problematic social support from patients' perspective: the case of systemic lupus erythematosus.

Davide Mazzoni1, Elvira Cicognani.   

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.

Entities:  

Keywords:  Systemic Lupus Erythematosus; qualitative research; quality of life; social support

Mesh:

Year:  2014        PMID: 24835088     DOI: 10.1080/00981389.2014.888124

Source DB:  PubMed          Journal:  Soc Work Health Care        ISSN: 0098-1389


  6 in total

1.  Wolf-living with SLE in a novel.

Authors:  Ad A Kaptein; Joshua M Smyth; Richard S Panush
Journal:  Clin Rheumatol       Date:  2014-11-04       Impact factor: 2.980

2.  Patient and Caregiver Perspectives on Managing Multiple Health Conditions.

Authors:  Catherine Riffin; Peter H Van Ness; Lynne Iannone; Terri Fried
Journal:  J Am Geriatr Soc       Date:  2018-08-28       Impact factor: 5.562

3.  Sex Differences in Quality of Life in Patients With Systemic Lupus Erythematosus.

Authors:  Meenakshi Jolly; Winston Sequeira; Joel A Block; Sergio Toloza; Ana Bertoli; Ivanna Blazevic; Luis M Vila; Ioana Moldovan; Karina D Torralba; Davide Mazzoni; Elvira Cicognani; Sarfaraz Hasni; Berna Goker; Seminur Haznedaroglu; Josiane Bourre-Tessier; Sandra V Navarra; Chi Chiu Mok; Michael Weisman; Ann E Clarke; Daniel Wallace; Graciela Alarcón
Journal:  Arthritis Care Res (Hoboken)       Date:  2018-12-20       Impact factor: 4.794

4.  How do patients with systemic autoimmune rheumatic disease perceive the use of their medications: a systematic review and thematic synthesis of qualitative research.

Authors:  Hans Haag; Tim Liang; J Antonio Avina-Zubieta; Mary A De Vera
Journal:  BMC Rheumatol       Date:  2018-04-02

5.  "…Not Having the Real Support That We Need": Patients' Experiences with Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support.

Authors:  Jerik Leung; Jennifer Ra; Elizabeth A Baker; Alfred H J Kim
Journal:  ACR Open Rheumatol       Date:  2019-04-22

6.  Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus.

Authors:  Jennifer H Ra; Jerik Leung; Elizabeth A Baker; Alfred H J Kim
Journal:  Arthritis Care Res (Hoboken)       Date:  2021-09-08       Impact factor: 5.178

  6 in total

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