Importance of lay organizations for coping with endometriosis.
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This study examined the social support experiences of women with endometriosis in an online support group, finding they value connections with other patients and knowledgeable support systems.
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Abstract
OBJECTIVE: To evaluate the coping resource of social support for women with endometriosis. STUDY DESIGN: The social support experience of 46 women who participate in an endometriosis support group on the internet were examined. A questionnaire was designed to explore the social support experiences of these women in four relationship categories: spouse/partner, friends/extended family, other with endometriosis and health care providers. RESULTS: The participants' responses were analyzed for themes. Overall themes that emerged from the analysis include: the participants wanted to be listened to and believed, they wanted their support network to be knowledgeable about endometriosis, they wanted others to understand the symptoms of the disease, and they wanted their support system to share information about the disease. CONCLUSION: In general, the women with endometriosis in this study value connections to other women with endometriosis. Also, in general, these women want information from their health care providers and others in their support network. Physicians are in a good position to help these women connect to a vast network of information and support.
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Cited by (20)
- Endometriosis and Depression: A Double Agony for Women 2023
- SOCIAL MEDIA SUPPORT FOR WOMEN WITH ENDOMETRIOSIS: A SYSTEMATIC REVIEW 2023
- Living with Endometriosis: A Narrative Analysis of the Experiences of Kenyan Women 2023
- Partners matter: The psychosocial well-being of couples when dealing with endometriosis 2022
- Current usage of qualitative research in female pelvic pain: a systematic review 2019
- Análise qualitativa dos mecanismos de enfrentamento da dor em mulheres com dor pélvica crônica 2019
- Self-management in condition-specific health: a systematic review of the evidence among women diagnosed with endometriosis 2019
- Attentes des femmes atteintes d’endométriose : quelle information apporter ? RPC Endométriose CNGOF-HAS 2018
- Republication de : Attentes des femmes atteintes d’endométriose : Quelle information apporter ? RPC Endométriose CNGOF-HAS 2018
- Therapeutic Affordances of Online Support Group Use in Women With Endometriosis 2016
- The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review 2014
- The social and psychological impact of endometriosis on women's lives: a critical narrative review 2013
- Psychosomatic Aspects 2011
- Coping With Endometriosis 2010
- Personal Accounts of Endometriosis: Online Narratives of Lives Shaped by Pain 2009
- The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay 2009
- The Experience of Chronic Illness in Women: A Comparison Between Women with Endometriosis and Women with Chronic Migraine Headaches 2007
- Systematic reviews of qualitative evidence: What are the experiences of women with endometriosis? 2006
- Endometriosis 2005
- A life shaped by pain: women and endometriosis 2005
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- pubmed
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