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Research Paper

Become your own advocate: Advice from women living with scleroderma

, PhD, RN &
Pages 1492-1501 | Accepted 01 Sep 2006, Published online: 07 Jul 2009

Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (3)

Katherine Milette, Brett D. Thombs, Sébastien Dewez, Annett Körner & Sandra Peláez. (2020) Scleroderma patient perspectives on social support from close social relationships. Disability and Rehabilitation 42:11, pages 1588-1598.
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Katherine Milette, Brett D. Thombs, Kristina Maiorino, Warren R. Nielson, Annett Körner & Sandra Peláez. (2019) Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program. Disability and Rehabilitation 41:21, pages 2506-2515.
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Articles from other publishers (16)

Matylda Sierakowska, Halina Doroszkiewicz, Justyna Sierakowska, Marzena Olesińska, Agnieszka Grabowska-Jodkowska, Marek Brzosko, Piotr Leszczyński, Katarzyna Pawlak-Buś, Bogdan Batko, Piotr Wiland, Maria Majdan, Małgorzata Bykowska-Sochacka, Wojciech Romanowski, Aleksandra Zon-Giebel, Sławomir Jeka & Mwidimi Ndosi. (2019) Factors associated with quality of life in systemic sclerosis: a cross-sectional study. Quality of Life Research 28:12, pages 3347-3354.
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Michael Hughes & John D Pauling. (2019) Exploring the patient experience of digital ulcers in systemic sclerosis. Seminars in Arthritis and Rheumatism 48:5, pages 888-894.
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Dinesh Khanna, Jennifer Serrano, Veronica J. Berrocal, Richard M. Silver, Pedro Cuencas, Sharon L. Newbill, Josephine Battyany, Cynthia Maxwell, Mary Alore, Laura Dyas, Robert Riggs, Kerri Connolly, Saville Kellner, Jody J. Fisher, Erica Bush, Anjali Sachdeva, Luke Evnin, Dennis W. Raisch & Janet L. Poole. (2019) Randomized Controlled Trial to Evaluate an Internet‐Based Self‐Management Program in Systemic Sclerosis. Arthritis Care & Research.
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John D Pauling, Lesley Ann Saketkoo, Marco Matucci-Cerinic, Francesca Ingegnoli & Dinesh Khanna. (2019) The patient experience of Raynaud’s phenomenon in systemic sclerosis. Rheumatology 58:1, pages 18-26.
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Justyna Sołowiej-Chmiel & Matylda Sierakowska. (2018) Functioning in the emotional sphere and ways of coping with chronic connective tissue disease. Rheumatology 56:5, pages 321-327.
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Daniel Sumpton, Vivek Thakkar, Sean O'Neill, Davinder Singh-Grewal, Jonathan C. Craig & Allison Tong. (2017) “It's Not Me, It's Not Really Me.” Insights From Patients on Living With Systemic Sclerosis: An Interview Study. Arthritis Care & Research 69:11, pages 1733-1742.
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Matylda Sierakowska, Stanisław Sierakowski, Justyna Sierakowska & Elżbieta Krajewska-Kułak. (2016) Comparative analysis of educational needs of patients with rheumatic diseases selected based on the Polish version of the Educational Needs Assessment Tool (Pol-ENAT). Rheumatology 54:4, pages 153-160.
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Ayano Nakayama, David J. Tunnicliffe, Vivek Thakkar, Davinder Singh-Grewal, Sean O’Neill, Jonathan C. Craig & Allison Tong. (2016) Patients’ Perspectives and Experiences Living with Systemic Sclerosis: A Systematic Review and Thematic Synthesis of Qualitative Studies. The Journal of Rheumatology 43:7, pages 1363-1375.
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Anne Schouffoer, Mwidimi E. Ndosi, Thea P. M. Vliet Vlieland & Jorit J. L. Meesters. (2015) The educational needs of people with systemic sclerosis: a cross-sectional study using the Dutch version of the Educational Needs Assessment Tool (D-ENAT). Rheumatology International 36:2, pages 289-294.
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Janet L. Poole, Cindy Mendelson, Betty Skipper & Dinesh Khanna. (2014) Taking Charge of Systemic Sclerosis: A Pilot Study to Assess the Effectiveness of an Internet Self-Management Program. Arthritis Care & Research 66:5, pages 778-782.
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Janet L. Poole, Betty Skipper & Cindy Mendelson. (2013) Evaluation of a mail-delivered, print-format, self-management program for persons with systemic sclerosis. Clinical Rheumatology 32:9, pages 1393-1398.
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Agnes Kocher, Sabine Adler & Elisabeth Spichiger. (2013) Skin and Mucosa Care in Systemic Sclerosis – Patients' and Family Caregivers' Experiences and Expectations of a Specific Education Programme: A Qualitative Study. Musculoskeletal Care 11:3, pages 168-178.
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Fatma Ilknur Cinar, Vesile Unver, Sedat Yilmaz, Muhammet Cinar, Fatma Yilmaz, Ismail Simsek, Hakan Erdem, Salih Pay & Ayhan Dinc. (2011) Living with scleroderma: patients? perspectives, a phenomenological study. Rheumatology International 32:11, pages 3573-3579.
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Una Buck, Janet Poole & Cindy Mendelson. (2010) Factors related to self‐efficacy in persons with scleroderma. Musculoskeletal Care 8:4, pages 197-203.
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Brett D. Thombs, Wim van Lankveld, Marielle Bassel, Murray Baron, Robert Buzza, Shirley Haslam, Jennifer A. Haythornthwaite, Marie Hudson, Lisa R. Jewett, Ruby Knafo, Linda Kwakkenbos, Vanessa L. Malcarne, Katherine Milette, Sarosh J. Motivala, Evan G. Newton, Warren R. Nielson, Marion Pacy, Ilya Razykov, Orit Schieir, Suzanne Taillefer & Maureen Worron‐Sauve. (2010) Psychological health and well‐being in systemic sclerosis: State of the science and consensus research agenda. Arthritis Care & Research 62:8, pages 1181-1189.
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. (2008) Current World Literature. Current Opinion in Rheumatology 20:5, pages 631-638.
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