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Quality of Life Research
Gepubliceerd in: Quality of Life Research 5/2016

01-05-2016

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

Auteurs: Kirby A. M. Brennan, Ann-Marie Creaven

Gepubliceerd in: Quality of Life Research | Uitgave 5/2016

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Abstract

Purpose

Because symptoms are not immediately visible to others, systemic lupus erythematosus (SLE) is often considered an invisible illness. This invisibility can reduce the social support received from network members and adversely affect the quality of life. In the light of this, social support from formal support groups and from medical professionals can be particularly important; however, literature examining support from these sources is scarce. The purpose of this study was to explore the nature and impact of social support from medical professionals and from support groups for individuals with SLE.

Methods

Participants responded to open-ended questions on an online survey administered by Lupus UK and Lupus Group Ireland. Qualitative data from 133 participants (77 % of respondents) were analysed.

Results

Thematic analysis revealed three overarching themes: invisibility, inadequate care, and validation. Respondents felt that their SLE was invisible to social ties and to medical professionals. In addition, treatment and organisational factors in health care contributed to the sense of inadequate care. Finally, validation was derived from informational and emotional support from both support groups, and from some medical professionals.

Conclusions

The findings suggest that individuals with SLE have mixed experiences in terms of contact with medical professionals and involvement with support groups. Furthermore, low public awareness of lupus appears to contribute to feelings of invisibility for patients, leading to loneliness and isolation. Medical professionals might benefit from skills training in terms of managing the psychosocial consequences of lupus.
vorige artikel The burden of neck pain: its meaning for persons with neck pain and healthcare providers, explored by concept mapping
volgende artikel Health-related quality of life in two randomized controlled trials of phentermine/topiramate for obesity: What mediates improvement?
Literatuur
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.CrossRef
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.CrossRefPubMed
5.
Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic Medicine, 38(5), 300–314.CrossRefPubMed
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.CrossRef
7.
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310–357.CrossRefPubMed
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.PubMed
9.
Mazzoni, D., & Cicognani, E. (2011). Social support and health in patients with systemic lupus erythematosus: A literature review. Lupus, 20, 1117–1125.CrossRefPubMed
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.CrossRef
11.
Corcoran, D., & Wall, J. G. (2000). Lupus support and awareness in the Republic of Ireland. Irish Medical Journal, 92, 54.
12.
13.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRef
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.CrossRefPubMedPubMedCentral
15.
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/​1366562971019004​0.CrossRef
17.
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMedPubMedCentral
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​.CrossRef
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.CrossRef
25.
Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing, 32, 243–248.CrossRefPubMed
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.CrossRefPubMed
Metagegevens
Titel
Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus
Auteurs
Kirby A. M. Brennan
Ann-Marie Creaven
Publicatiedatum
01-05-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1151-z

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