Scleroderma patient perspectives on social support from close social relationships

References

• Institut National d’Excellence en Santé et Services Sociaux (INESSS). Prise en charge des maladies rares: expériences étrangères. ETMIS 2011;7:1–63.
   Google Scholar
• Kole A, Faurisson F. Rare disease social epidemiology: Analysis of inequalities. In: de la Paz MP, Groft SC, editors. Rare diseases epidemiology. New York (NY): Springer Science & Business Media; 2010; p. 223–250.
   Google Scholar
• Canadian Organization for Rare Disorders. Now is the time: a strategy for rare diseases is a strategy for all Canadians. Toronto (ON): CORD; 2015.
   Google Scholar
• Bandura A. Health promotion from the perspective of social cognitive theory. Psychol Health. 1998;13:623–649.
   Web of Science ®Google Scholar
• Bandura A. Exercise of human agency through collective efficacy. Curr Dir Psychol Sci. 2000;9:75–78.
   Web of Science ®Google Scholar
• Mayes M. Systemic sclerosis: a clinical features. In: Klippel JH, Stone JH, Crofford LJ, White PH, editors. Primer on the rheumatic diseases. 13th ed. New York (NY): Springer and Arthritis Foundation; 2008; p. 343–350.
   Google Scholar
• Mayes M. Scleroderma epidemiology. Rheum Dis Clin North Am. 2003;29:239–254.
   PubMed Web of Science ®Google Scholar
• Domsic RT, Medsger Jr TA. Disease subsets in clinical practice. In: Varga J, Denton C, Wigley F, Allanore Y, Kuwana M, editors. Scleroderma: from pathogenesis to comprehensive management. 2nd ed. New York (NY): Springer; 2017; p. 39–48.
   Google Scholar
• What is scleroderma? [Internet]. Danvers (MA): Scleroderma Foundation; c2017 [cited 2017 Oct 19]. Available from: http://www.scleroderma.org/site/PageServer?pagename=patients_whatis#.VfB6dLQ77G4.
   Google Scholar
• Sandqvist G, Åkesson A, Eklund M. Daily occupations and well-being in women with limited cutaneous systemic sclerosis. Am J Occup Ther. 2005;59:390–397.
   PubMed Web of Science ®Google Scholar
• Oksel E, Gündüzoğlu NÇ. Investigation of life experiences of women with scleroderma. Sex Disabil. 2014;32:15–21.
   Web of Science ®Google Scholar
• Cinar FI, Unver V, Yilmaz S, et al. Living with scleroderma: patients’ perspectives, a phenomenological study. Rheumatol Int. 2012;32:3573–3579.
   PubMed Web of Science ®Google Scholar
• Joachim G, Acorn S. Life with a rare chronic disease: the scleroderma experience. J Adv Nurs. 2003;42:598–606.
   PubMed Web of Science ®Google Scholar
• Suarez-Almazor ME, Kallen MA, Roundtree AK, et al. Disease and symptom burden in systemic sclerosis: a patient perspective. J Rheumatol. 2007;34:1718–1726.
   PubMedGoogle Scholar
• Mendelson C, Poole JL. Become your own advocate: advice from women living with scleroderma. Disabil Rehabil. 2007;29:1492–1501.
   PubMed Web of Science ®Google Scholar
• Gumuchian ST, Peláez S, Delisle VC, et al. Exploring sources of emotional distress among people living with scleroderma: a focus group study. PLoS One. 2016;11:e0152419.
   PubMed Web of Science ®Google Scholar
• Jewett LR, Kwakkenbos L, Delisle VC, et al. Psychosocial issues and care for patients with systemic sclerosis. In: Varga J, Denton CP, Wigley FM, editors. Scleroderma: from pathogenesis to comprehensive management. 2nd ed. New York (NY): Springer; 2017; p. 615–621.
   Google Scholar
• Mendelson C, Poole JL, Allaire S. Experiencing work as a daily challenge: the case of scleroderma. Work. 2013;44:405–413.
   PubMedGoogle Scholar
• Newton EG, Thombs BD, Groleau D. The experience of emotional distress among women with scleroderma. Qual Health Res. 2012;22:1195–1206.
   PubMed Web of Science ®Google Scholar
• Stamm TA, Mattsson M, Mihai C, et al. Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries. Ann Rheum Dis. 2011;70:1074–1079.
   PubMed Web of Science ®Google Scholar
• Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196:129–136.
   PubMed Web of Science ®Google Scholar
• Berkman LF, Glass T. Social integration, social networks, social support, and health. In: Berkman LF, Kawachi I, editors. Social epidemiology. New York (NY): Oxford University Press; 2000; p. 137–173.
   Google Scholar
• Gumuchian ST, Peláez S, Delisle VC, et al. Understanding coping strategies among people living with scleroderma: a focus group study. Disabil Rehabil. 2017. DOI:10.1080/09638288.2017.1365954
   Web of Science ®Google Scholar
• Mouthon L, Alami S, Boisard A-S, et al. Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study. BMC Musculoskelet Disord. 2017. DOI:10.1186/s12891-017-1603-4
   PubMed Web of Science ®Google Scholar
• Smith KP, Christakis NA. Social networks and health. Annu Rev Sociol. 2008;34:405–429.
   Web of Science ®Google Scholar
• Uchino BN. Social support and physical health: understanding the health consequences of relationships. New Haven, (CT): Yale University Press; 2004.
   Google Scholar
• Cohen S, Gottlieb BH, Underwood LG. Social relationships and health. In: Cohen S, Underwood LG, Gottlieb BH, editors. Social support measurement and intervention: a guide for healh and social scientists. New York, (NY): Oxford University Press; 2000; p. 3–28.
   Google Scholar
• Heaney CA, Israel BA. Social networks and social support. In: Glanz K, Rimer BK, Viswanath K, editors. Health behavior and health education: theory, research, and practice. 4th ed. San Francisco, (CA): Jossey-Bass; 2008; p. 189–210.
   Google Scholar
• Gallant MP. The influence of social support on chronic illness self-management: a review and directions for research. Health Educ Behav. 2003;30:170–195.
   PubMed Web of Science ®Google Scholar
• Gallant MP, Spitze GD, Prohaska TR. Help or hindrance? How family and friends influence chronic illness self-management among older adults. Res Aging. 2007;29:375–409.
   Web of Science ®Google Scholar
• Cobb S. Presidential Address-1976. Social support as a moderator of life stress. Psychosom Med. 1976;38:300–314.
   PubMed Web of Science ®Google Scholar
• Cantor MH, Mayer MJ. Factors in differential utilization of services by urban elderly. J Gerontol Soc Work. 1979;1:47–61.
   Google Scholar
• Cantor MH. Neighbors and friends: an overlooked resource in the informal support system. Res Aging. 1979;1:434–463.
   Google Scholar
• Chappell N, Blandford A. Informal and formal care: exploring the complementarity. Ageing Soc. 1991;11:299–317.
   Google Scholar
• Pinquart M, Sörensen S. Older adults' preferences for informal, formal, and mixed support for future care needs: a comparison of Germany and the United States. Int J Aging Hum Dev. 2002;54:291–314.
   PubMed Web of Science ®Google Scholar
• Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the internet and its implications for health care providers: findings from the first health information national trends survey. Arch Intern Med. 2005;165:2618–2624.
   PubMed Web of Science ®Google Scholar
• Hall JA, Roter DL, Katz NR. Meta-analysis of correlates of provider behavior in medical encounters. Med Care. 1988;26: 657–675.
   PubMed Web of Science ®Google Scholar
• Green K, Derlega VJ, Mathews A. Self-disclosure in personal relationships. In: Vangelisti AL, Perlman D, editors. Cambridge handbook of personal relationships. 1st ed. Cambridge (UK): Cambridge University Press; 2006; p. 409–428.
   Google Scholar
• Laurenceau JP, Kleinman BM. Intimacy in personal relationships. In: Vangelisti AL, Perlman D, editors. Cambridge handbook of personal relationships. 1st ed. Cambridge (UK): Cambridge University Press; 2006; p. 637–656.
   Google Scholar
• Ell K. Social networks, social support and coping with serious illness: the family connection. Soc Sci Med. 1996;42:173–183.
   PubMed Web of Science ®Google Scholar
• Revenson TA. Social support and marital coping with chronic illness. Ann Behav Med. 1994;16:122–130.
   Google Scholar
• Lakey B, Orehek E. Relational regulation theory: a new approach to explain the link between perceived social support and mental health. Psychol Rev. 2011;118:482.
   PubMed Web of Science ®Google Scholar
• Rosland AM, Piette JD. Emerging models for mobilizing family support for chronic disease management: a structured review. Chronic Illn. 2010;6:7–21.
   PubMedGoogle Scholar
• Cinar FI, Unver V, Cinar M, et al. Coping strategies for activities of daily living in women whose hands affected by systemic sclerosis. J Clin Nurs. 2014;23:1630–1638.
   PubMed Web of Science ®Google Scholar
• Milette K, Thombs BD, Maiorino K, et al. Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program. Disabil Rehabil. 2018;1:1.
   Google Scholar
• Barbour R. Focus groups. In: Bourgeault I, Dingwall R, de Vries R, editors. The SAGE handbook for qualitative methods in health research. Thousand Oaks (CA): Sage; 2010; p. 327–352.
   Google Scholar
• Barbour R. Doing focus groups. London (UK): Sage; 2008.
   Google Scholar
• Gergen KJ. Relational being: beyond self and community. New York (NY): Oxford University Press; 2009.
   Google Scholar
• Barbour RS. Making sense of focus groups. Med Educ. 2005;39:742–750.
   PubMed Web of Science ®Google Scholar
• Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks (CA): Sage; 2012.
   Google Scholar
• Friese S. Qualitative data analysis with atlas TI. 2nd ed. Thousand Oaks (CA): Sage; 2014.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Vaismoradi M, Jones J, Turunen H, et al. Theme development in qualitative content analysis and thematic analysis. J Nurs Educ Pract. 2016;6:100–110.
   Google Scholar
• Morrow SL. Quality and trustworthiness in qualitative research in counseling psychology. J Couns Psychol. 2005;52:250–260.
   Web of Science ®Google Scholar
• Poland BD. Transcription quality. In: Gubrium JF, Holstein JA, editors. Handbook of interview research: context and method. Thousand Oaks (CA): Sage; 2002; p. 628–649.
   Google Scholar
• Rosland A, Kieffer E, Israel B, et al. When is social support important? The association of family support and professional support with specific diabetes self-management behaviors. J Gen Intern Med. 2008;23:1992–1999.
   PubMed Web of Science ®Google Scholar
• Thoits PA. Mechanisms linking social ties and support to physical and mental health. J Health Soc Behav. 2011;52:145–161.
   PubMed Web of Science ®Google Scholar
• Vassilev I, Rogers A, Kennedy A, et al. The influence of social networks on self-management support: a metasynthesis. BMC Public Health. 2014;14:719.
   PubMed Web of Science ®Google Scholar
• Dunbar SB, Clark PC, Quinn C, et al. Family influences on heart failure self-care and outcomes. J Cardiovasc Nurs. 2008;23:258–265.
   PubMed Web of Science ®Google Scholar
• Manne SL, Zautra AJ. Coping with arthritis. Current status and critique. Arthritis Rheum. 1992;35:1273–1280.
   PubMed Web of Science ®Google Scholar
• Cornwell B. Independence through social networks: bridging potential among older women and men. J Gerontol B Psychol Sci Soc Sci. 2011;66:782–794.
   PubMed Web of Science ®Google Scholar
• Kristofferzon M, Löfmark R, Carlsson M. Myocardial infarction: gender differences in coping and social support. J Adv Nurs. 2003;44:360–374.
   PubMed Web of Science ®Google Scholar
• Kitzinger J. Qualitative research. introducing focus groups. BMJ. 1995;311:299–302.
   PubMed Web of Science ®Google Scholar
• Carlsen B, Glenton C. What about N? A methodological study of sample-size reporting in focus group studies. BMC Med Res Methodol. 2011;11:26
   PubMed Web of Science ®Google Scholar
• Uchino BN. Understanding the links between social support and physical health: a life-span perspective with emphasis on the separability of perceived and received support. Perspect Psychol Sci. 2009;4:236–255.
   PubMedGoogle Scholar
• Rees CA, Karter AJ, Young BA. Race/ethnicity, social support, and associations with diabetes self-care and clinical outcomes in NHANES. Diabetes Educ. 2010;36:435–445.
   PubMed Web of Science ®Google Scholar
• Kwakkenbos L, Jewett LR, Baron M, et al. The scleroderma patient-centered intervention network (SPIN) cohort: 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.
   PubMedGoogle Scholar
• Thombs BD, Jewett LR, Assassi S, et al. New directions for patient-centred care in scleroderma: the scleroderma patient-centred intervention network (SPIN). Clin Exp Rheumatol. 2012;30:S23–S29.
   PubMed Web of Science ®Google Scholar
• Fisher EB, Coufal MM, Parada H, et al. Peer support in health care and prevention: cultural, organizational, and dissemination issues. Annu Rev Public Health. 2014;35:363–383.
   PubMed Web of Science ®Google Scholar