Support Groups in Scleroderma
- 42 Downloads
Purpose of Review
This review presents evidence on support group effectiveness in common diseases, research on support groups in systemic sclerosis (SSc), and work underway by the Scleroderma Patient-centered Intervention Network in collaboration with patient organizations to train SSc support group leaders in order to improve support group access and the experiences of support groups for members and leaders.
Giving and receiving emotional and practical support from others with SSc is an important reason that individuals with SSc attend support groups, but many patients cannot access support groups. SSc support group leaders report confidence in their ability to facilitate groups, but are less confident in tasks such as managing group dynamics and sustaining the group.
The Scleroderma Support group Leader EDucation (SPIN-SSLED) Program was developed to provide training to support group leaders and was recently tested through a feasibility trial. A full-scale trial will commence in 2019.
KeywordsScleroderma Systemic sclerosis Support groups Rare disease Social support
Ms. Rice is supported by a Health Systems Impact Fellowship through the Canadian Institutes for Health Research (CIHR). Dr. Thombs is supported by Fonds de recherche du Québec—Santé researcher salary award.
Compliance with Ethical Standards
Conflict of Interest
The authors declare that they have no conflicts of interest.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
- 1.Scleroderma Canada. Find a support group. www.scleroderma.ca/Support/Find-A-Support-Group.php (2018). Accessed 10 Sep 2018.
- 2.Scleroderma Foundation. Support groups. www.scleroderma.org/site/PageServer?pagename=patients_supportgroups#.Vbec7RZvdFw (2018). Accessed 10 Sep 2018.
- 4.Doull M, O’Connor AM, Welch V, Tugwell P, Wells GA. Peer support strategies for improving the health and well-being of individuals with chronic diseases. Cochrane Database Syst Rev. 2005;3:Art. No.:CD005352. doi: https://doi.org/10.1002/14651858.CD005352.
- 5.Scleroderma & Raynaud’s UK. Find support. www.sruk.co.uk/find-support (2016). Accessed 10 Sep 2018.
- 6.Scleroderma Association of New South Wales. Regional support groups. www.sclerodermansw.org/regional-support-groups (2015). Accessed 10 Sep 2018.
- 7.•• Gumuchian ST, Delisle VC, Kwakkenbos L, Pépin M, Carrier M-E, Malcarne VL, et al. Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey. Disabil Rehabil. 2017;19, 1:–9 https://doi-org.proxy3.library.mcgill.ca/10.1080/09638288.2017.1416497. This study describes results from a survey of reasons for attending scleroderma support groups and preferences for how the support groups are organized.
- 8.Kwakkenbos L, Jewett LR, Baron M, Bartlett SJ, Furst D, Gottesman K, et al. The Scleroderma Patient-centered Intervention Network (SPIN): protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context. BMJ Open. 2013;3:e003563. https://doi.org/10.1136/bmjopen-2013-003563.CrossRefPubMedPubMedCentralGoogle Scholar
- 12.Tang, P. A brief history of peer support: origins. http://peersforprogress.org/pfp_blog/a-brief-history-of-peer-support-origins/ (2019). Accessed 1 Jan 2019.
- 13.Cowen EL, Gardner EA, Zax M. Emergent approaches to mental health problems. 1st ed. New York: Appleton-Century-Crofts; 1967.Google Scholar
- 19.Pfeiffer PN, Heisler M, Piette JG, Rogers MAM, Valenstein M. Efficacy of peer support interventions for depression: a meta-analysis. Gen Hosp Psychiatry. 2011;33:29–36. https://doi.org/10.1016/j.genhosppsych.2010.10.002.CrossRefPubMedGoogle Scholar
- 21.Barrera M, Glasgow R, McKay HG, Boles S, Feil E. Do internet-based support interventions changes perception of social support? An experimental trial of approaches for supporting diabetes self-management. Am J Community Psychol. 2002;30(5):637–54. https://doi.org/10.1023/A:1016369114780.CrossRefPubMedGoogle Scholar
- 24.Fisher EB, Boothroyd RI, Elstad EA, Hays L, Henes A, Maslow GR, et al. Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews. Clin Diabetes Endocrinol. 2017;3:4. https://doi.org/10.1186/s40842-017-0042-3.CrossRefPubMedPubMedCentralGoogle Scholar
- 25.McCaughan E, Parahoo K, Hueter I, Northouse L, Bradbury I. Online support groups for women with breast cancer. Cochrane Database Syst Rev 2017;3. doi: https://doi.org/10.1002/14651858.CD011652.pub2.
- 28.Lauritzen J, Pedersen PU, Sørensen EE, Bjerrum MB. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review. JBI Database System Rev Implement Rep. 2015;13:373–433. https://doi.org/10.1089/tmj.2016.0183.CrossRefPubMedGoogle Scholar
- 29.Shire. Rare disease impact report: insights from patients and the medical community. www.globalgenes.org/raredisease-impact-report/ (2013). Accessed 15 Nov 2018.
- 31.Kole A, Faurisson F. The voice of 12,000 patients: experiences and expectations of rare disease patients on diagnosis and care in Europe. http://www.eurordis.org/IMG/pdf/voice_12000_ patients/EURORDISCARE_FULLBOOKr.pdf (2009). Accessed 15 Nov 2018.
- 32.European Organisation for Rare Diseases. Rare diseases: understanding this public health priority. http://www.eurordis. org/IMG/pdf/princeps_document-EN.pdf (2015). Accessed 15 Nov 2018.
- 33.• Delisle VC, Gumuchian ST, Rice DB, Levis AW, Kloda LA, Körner A, et al. Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: a scoping review. Patient. 2017;10:283–93. https://doi.org/10.1007/s40271-016-0213-9 This study reports perceived benefits and facilitators and barriers to successful support groups in rare diseases.CrossRefPubMedGoogle Scholar
- 34.Scleroderma SJ. In: Harris ED, Budd RC, Firestein GS, Genovese MS, Sergent JS, Ruddy S, et al., editors. Kelly’s Textbook of Rheumatology. Philadelphia: Elsevier; 2005. p. 1279–308.Google Scholar
- 36.Wigley FM, Hummers LK. Clinical features of systemic sclerosis. In: Hochberg MC, Silman AJ, Smolen JS, Weinblatt ME, Weismann WH, editors. Rheumatology. 3rd ed. Philadelphia: Mosby; 2003. p. 1463–80.Google Scholar
- 43.• Jewett LR, Kwakkenbos L, Delisle VC, Thombs BD. Psychosocial issues and care for patients with systemic sclerosis. In: Varga J, Denton CP, Wigley FM, Allanore Y, Kuwana M, editors. Scleroderma: from pathogenesis to comprehensive management, 2nd ed. Chicago: Springer; 2017. p. 615–21. This chapter provides an overview of psychosocial challenges and care options in scleroderma.CrossRefGoogle Scholar
- 48.Razykov I, Levis B, Hudson M, Baron M, Thombs BD. Canadian Scleroderma Research Group. Prevalence and clinical correlates of pruritus in patients with systemic sclerosis: an updated analysis of 959 patients. Rheumatology. 2013;52:2056–61. https://doi.org/10.1093/rheumatology/ket275.CrossRefPubMedGoogle Scholar
- 49.Milette K, Hudson M, Körner A, Baron M, Thombs BD. Canadian Scleroderma research group. Sleep disturbances in systemic sclerosis: evidence for the role of pain, pruritus, and gastrointestinal symptoms. Rheumatology. 2013;52:1715–20. https://doi.org/10.1093/rheumatology/ket223.CrossRefPubMedGoogle Scholar
- 50.Gholizadeh S, Fox RS, Mills SD, Jewett LR, Thombs BD, Malcarne VL. Coping with the disfigurement of scleroderma: facial, skin, and hand changes. In: Varga J, Denton CP, Wigley FM, Allanore Y, Kuwana M, editors. Scleroderma: From pathogenesis to comprehensive management. 2nd ed. Chicago: Springer; 2017. p. 713–21.CrossRefGoogle Scholar
- 51.• Gumuchian ST, Delisle VC, Peláez S, Malcarne VL, El-Baalbaki G, Kwakkenbos L, et al. Reasons for not participating in scleroderma patient support groups: a cross-sectional study. Arthritis Care Res. 2018;70:275–83. https://doi.org/10.1002/acr.23220 This study reports reasons why patients choose not to or are not able to participate in scleroderma support groups.CrossRefGoogle Scholar
- 52.Kwakkenbos L, Carboni Jiménez A, Peláez S, Carrier M-E, Malcarne VL, El-Baalbaki G, et al. Reasons for not participating in scleroderma patient support groups: a replication using the European Scleroderma Support Group Survey. In preparation. 2019.Google Scholar
- 54.Pepin M, Kwakkenbos L, Peláez S, Carrier M-E, Malcarne VL, El-Baalbaki G, et al. Reasons for attending support groups and organizational preferences: a replication study using the North American Scleroderma Support Group Survey. In preparation. 2019.Google Scholar
- 55.•• Delisle VC, Gumuchian ST, El-Baalbaki G, Körner A, Malcarne VL, Peláez S, et al. Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey. Disabil Rehabil. 2018;25:1–6. https://doi.org/10.1080/09638288.2018.1467970 This study describes training and support needs identified by scleroderma support group leaders.CrossRefGoogle Scholar
- 60.Zordan RD, Juraskova I, Butow PN, Jolan A, Kirsten L, Chapman J, et al. Exploring the impact of training on the experience of Australian support group leaders: current practices and implications for research. Health Expect. 2010;13:427–40. https://doi.org/10.1111/j.1369-7625.2010.00592.x.CrossRefPubMedPubMedCentralGoogle Scholar
- 61.• Delisle VC, Gumuchian ST, Kloda LA, Boruff J, El-Baalbaki G, Körner A, et al. Effect of support group peer facilitator training programmes on peer facilitator and support group member outcomes: a systematic review. BMJ Open. 2016;6:e013325. https://doi.org/10.1136/bmjopen-2016-013325 This is a systematic review of training programs for peer support group leaders.CrossRefPubMedPubMedCentralGoogle Scholar
- 62.Thombs BD, Dyas L, Pépin M, Razykov I, Aguila K, Carrier M-E, et al. Feasibility trial of the Scleroderma Patient-centered Intervention Network Support Group Leader Education (SPIN-SSLED) Program. 2019 Canadian rheumatology association annual scientific meeting; Montreal, Canada 2019Google Scholar