Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus

Quality of Life Research

Volumn 25, Issue 5, 2016, Pages 1227-1235

  Brennan, Kirby A M ^a   Creaven, Ann Marie ^a  

^a UNIVERSITY OF LIMERICK   (Ireland)

Author keywords

Illness; Lupus; Qualitative; Quality of life; Social support; Thematic analysis

Indexed keywords

ADULT; AGED; ARTICLE; HEALTH BEHAVIOR; HUMAN; LONELINESS; MAJOR CLINICAL STUDY; MEDICAL CARE; QUALITATIVE ANALYSIS; QUALITY OF LIFE; SOCIAL ISOLATION; SOCIAL NETWORK; SOCIAL SUPPORT; SUPPORT GROUP; SYSTEMIC LUPUS ERYTHEMATOSUS; THEMATIC ANALYSIS; ADOLESCENT; EMOTION; FEMALE; HEALTH CARE DELIVERY; HEALTH SERVICE; IRELAND; MALE; MIDDLE AGED; PSYCHOLOGY; QUESTIONNAIRE; SELF HELP; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; DELIVERY OF HEALTH CARE; EMOTIONS; FEMALE; HEALTH SERVICES; HUMANS; IRELAND; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; MIDDLE AGED; QUALITY OF LIFE; SELF-HELP GROUPS; SOCIAL SUPPORT; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 84944710407     PISSN: 09629343     EISSN: 15732649     Source Type: Journal    
DOI: 10.1007/s11136-015-1151-z     Document Type: Article

References (26)

1. Donoghue, P. J., & Siegel, M. E. (2000). Sick and tired of feeling sick and tired: Living with invisible chronic illness. USA: WW Norton & Company.
2. Juuso, P., Skär, L., Olsson, M., & Söderberg, S. (2014). Meanings of being received and met by others as experienced by women with fibromyalgia. Qualitative Health Research,10, 1–10. doi:10.1177/1049732314547540.
3. Mazzoni, D., & Cicognani, E. (2014). Sharing experiences and social support requests in an Internet forum for patients with systemic lupus erythematosus. Journal of Health Psychology,1, 689–696.
4. Moses, N., Wiggers, J., & Nicholas, C. (2008). Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study. Quality of Life Research,17(6), 867–876.
5. Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic Medicine,38(5), 300–314.
6. Thoits, P. A. (2011). Mechanisms linking social ties and support to physical and mental health. Journal of Health and Social Behaviour,52, 145–161.
7. Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin,98(2), 310–357.
8. Bae, S. C., Hashimoto, H., Karlson, E. W., Liang, M. H., & Daltroy, L. H. (2001). Variable effects of social support by race, economic status, and disease activity in systemic lupus erythematosus. Journal of Rheumatology,28, 1245–1251.
9. Mazzoni, D., & Cicognani, E. (2011). Social support and health in patients with systemic lupus erythematosus: A literature review. Lupus,20, 1117–1125.
10. Street, R. L., Jr, Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counselling,74, 295–301.
11. Corcoran, D., & Wall, J. G. (2000). Lupus support and awareness in the Republic of Ireland. Irish Medical Journal,92, 54.
12. Bender, J. L., Jimenez-Marroquin, M.-C., & Jadad, J. R. (2011). Seeking support on Facebook: A content analysis of breast cancer groups. Journal of Medical Internet Research,13, e16. doi:10.2196/jmir.1560.
13. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology,3, 77–101.
14. Morrison, L., Moss-Morris, R., Michie, S., & Yardley, L. (2014). Optimizing engagement with Internet-based health behaviour change interventions: Comparison of self-assessment with and without tailored feedback using a mixed methods approach. British Journal of Health Psychology,19, 839–855. doi:10.1111/bjhp.12083.
15. Tracy, E. M., Munson, M. R., Peterson, L. T., & Floersch, J. E. (2010). Social support: A mixed blessing for women in substance abuse treatment. Journal of Social Work Practice in the Addictions,10, 257–282. doi:10.1080/1533256X.2010.500970.
16. Vickers, M. H. (1997). Life at work with “invisible” chronic illness (ICI): The “unseen”, unspoken, unrecognized dilemma of disclosure. Journal of Workplace Learning,9, 240–252. doi:10.1108/13665629710190040.
17. Coursaris, C. K., & Lin, M. (2009). An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers in Human Behaviour,25, 911–918. doi:10.1016/j.chb.2009.03.006.
18. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
19. Revenson, T. A., Schiffiano, K. M., Majerovitz, S. D., & Gibofsky, A. (1991). Social support as a double-edged sword: The relation of positive and problematic support to depression among rheumatoid arthritis patients. Social Science and Medicine,33, 807–813.
20. Carmack Taylor, C. L., Kulik, J., Badra, H., Smith, M., Basen-Engquista, K., Penedoc, F., & Gritz, E. R. (2007). A social comparison theory analysis of group composition and efficacy of cancer support group programs. Social Science and Medicine,65, 262–273.
21. Dibb, B., & Yardley, L. (2006). How does social comparison within a self-help group influence adjustment to chronic illness? A longitudinal study. Social Science and Medicine,63, 1602–1613.
22. Somers, E. C., Marder, W., Cagnoli, P., Lewis, E. E., DeGuire, P., Gordon, C., et al. (2014). Population-based incidence and prevalence of systemic lupus erythematosus: The Michigan Lupus Epidemiology and Surveillance program. Arthritis and Rheumatology,66, 369–378.
23. Coulson, N. S. (2013). How do online patient support communities affect the experience of inflammatory bowel disease? An online survey. Journal of the Royal Society of Medicine Short Reports,4, 1–8. doi:10.1177/2042533313478004.
24. Schofield, P. E., Butow, P. N., Thompson, J. F., Tattersall, M. H. N., Beeney, L. J., & Dunn, S. M. (2013). Psychological responses of patients receiving a diagnosis of cancer. Annals of Oncology,14, 48–56.
25. Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing,32, 243–248.
26. Helgeson, V. S., Cohen, S., Shulz, R., & Yasko, J. (2000). Group support interventions for women with breast cancer: Who benefits from what? Health Psychology,19, 107–114.