"To be lonely in your own loneliness": The interplay between self-perceived loneliness and rheumatoid arthritis in everyday life: A qualitative study.
patient experiences
psychological and social impact
rheumatology
Journal
Musculoskeletal care
ISSN: 1557-0681
Titre abrégé: Musculoskeletal Care
Pays: England
ID NLM: 101181344
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
received:
01
05
2020
revised:
02
05
2020
accepted:
06
05
2020
pubmed:
4
6
2020
medline:
29
10
2021
entrez:
4
6
2020
Statut:
ppublish
Résumé
Loneliness has a negative impact on physical health, and rheumatoid arthritis symptoms can lead to social isolation. However, there is a lack of research exploring patients' perspectives on self-perceived loneliness in everyday life with rheumatoid arthritis. The purpose of this study was to gain insight into the meaning and importance of self-perceived loneliness among adult patients diagnosed with rheumatoid arthritis. This study was designed as a qualitative, exploratory interview study using a narrative framework. Semi-structured interviews were conducted with Danish adults with rheumatoid arthritis. All interviews were recorded, transcribed verbatim, and analyzed within a narrative thematic framework. Ten women and seven men were interviewed, aged between 18 and 73 years and a disease duration between 6 months and 40 years. Three themes were identified during the analysis: (1) explanations of loneliness in everyday life with rheumatoid arthritis, (2) disclosing or disguising loneliness, and (3) feelings of loneliness in social life. The findings from this study show that loneliness can be burdensome when living with RA. Narratives of loneliness can be hard for patients to disclose, so health care practitioners should take responsibility for legitimizing this subject. A narrative approach in consultations may be helpful to support patients and to encourage a dialogue about loneliness in everyday life with rheumatoid arthritis.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
450-458Informations de copyright
© 2020 John Wiley & Sons, Ltd.
Références
Benka, J., Nagyova, I., Rosenberger, J., Calfova, A., Macejova, Z., Middel, B., … Groothoff, J. W. (2012). Social support and psychological distress in rheumatoid arthritis: A 4-year prospective study. Disability and Rehabilitation, 34(9), 754-761. https://doi.org/10.3109/09638288.2011.619618
Cacioppo, J. T., & Cacioppo, S. (2014). Social relationships and health: The toxic effects of perceived social isolation. Social and Personality Psychology Compass, 8(2), 58-72. https://doi.org/10.1111/spc3.12087
Charon, R. (2001). The patient-physician relationship. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA, 286(15), 1897-1902. https://doi.org/10.1001/jama.286.15.1897
Charon, R. (2006). Narrative medicine: Honoring the stories of illness. Oxford New York: Oxford University Press.
Christensen, A. V., Juel, K., Ekholm, O., Thrysøe, L., Thorup, C. B., Borregaard, B., … Berg, S. K. (2020). Significantly increased risk of all-cause mortality among cardiac patients feeling lonely. Heart, 106(2), 140-146. https://doi.org/10.1136/heartjnl-2019-315460
Czarniawska, B. (2004). Narratives in social science research, Introducing Qualitative Methods. London: SAGE.
DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology, 23(2), 207-218. https://doi.org/10.1037/0278-6133.23.2.207
Dures, E., Fraser, I., Almeida, C., Peterson, A., Caesley, J., Pollock, J., … Hewlett, S. (2017). Patients' perspectives on the psychological impact of inflammatory arthritis and meeting the associated support needs: Open-ended responses in a multi-centre survey. Musculoskeletal Care, 15(3), 175-185. https://doi.org/10.1002/msc.1159
El-Mansoury, T. M., Taal, E., Abdel-Nasser, A. M., Riemsma, R. P., Mahfouz, R., Mahmoud, J. A., … Rasker, J. J. (2008). Loneliness among women with rheumatoid arthritis: A cross-cultural study in the Netherlands and Egypt. Clinical Rheumatology, 27(9), 1109-1118. https://doi.org/10.1007/s10067-008-0876-2
Ernst, J. M., & Cacioppo, J. T. (1999). Lonely hearts: Psychological perspectives on loneliness. Applied and Preventive Psychology, 8(1), 1-22. https://doi.org/10.1016/s0962-1849(99)80008-0
Frank, A. W. (2007). Five dramas of illness. Perspectives in Biology and Medicine, 50(3), 379-394. https://doi.org/10.1353/pbm.2007.0027
Frank, A. W. (2012). Practicing dialogical narrative analysis. In Varieties of narrative analysis (pp. 33-52). Thousand Oaks, California: Holstein and Gubrien.
Gibbs, G. (2018). Analyzing biographies and narratives. In Analyzing qualitative data (2nd ed.) (p. 210 p, illustreret). Los Angeles: SAGE.
Hawkley, L. C., Thisted, R. A., Masi, C. M., & Cacioppo, J. T. (2010). Loneliness predicts increased blood pressure: 5-year cross-lagged analyses in middle-aged and older adults. Psychology and Aging, 25(1), 132-141. https://doi.org/10.1037/a0017805
Holt-Lunstad, J. (2017). The potential public health relevance of social isolation and loneliness: Prevalence, epidemiology, and risk factors. Public Policy & Aging Report, 27(4), 127-130. https://doi.org/10.1093/ppar/prx030
Holt-Lunstad, J., & Smith, T. B. (2016). Loneliness and social isolation as risk factors for CVD: Implications for evidence-based patient care and scientific inquiry. Heart, 102(13), 987-989. https://doi.org/10.1136/heartjnl-2015-309242
Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), e1000316, 1-22. https://doi.org/10.1371/journal.pmed.1000316
Jaremka, L. M., Fagundes, C. P., Glaser, R., Bennett, J. M., Malarkey, W. B., & Kiecolt-Glaser, J. K. (2013). Loneliness predicts pain, depression, and fatigue: Understanding the role of immune dysregulation. Psychoneuroendocrinology, 38(8), 1310-1317. https://doi.org/10.1016/j.psyneuen.2012.11.016
Kool, M. B., & Geenen, R. (2012). Loneliness in patients with rheumatic diseases: The significance of invalidation and lack of social support. The Journal of Psychology, 146(1-2), 229-241. https://doi.org/10.1080/00223980.2011.606434
Kusaslan Avci, D. (2018). Evaluation of the relationship between loneliness and medication adherence in patients with diabetes mellitus: A cross-sectional study. The Journal of International Medical Research, 46(8), 3149-3161. https://doi.org/10.1177/0300060518773223
Kvrgic, Z., Asiedu, G. B., Crowson, C. S., Ridgeway, J. L., & Davis, J. M. 3rd. (2018). “Like no one is listening to me”: A qualitative study of patient-provider discordance between global assessments of disease activity in rheumatoid arthritis. Arthritis Care Res (Hoboken), 70(10), 1439-1447. https://doi.org/10.1002/acr.23501
Laidmäe, V.-I., Leppik, L., Tulva, T., & Hääl, M.-L. (2009). Disease-related social and family life: people coping with rheumatoid arthritis in Estonia. Critical Public Health, 19(1), 87-105. https://doi.org/10.1080/09581590802375871
Lasgaard, M., Friis, K., & Shevlin, M. (2016). “Where are all the lonely people?” A population-based study of high-risk groups across the life span. Social Psychiatry and Psychiatric Epidemiology, 51(10), 1373-1384. https://doi.org/10.1007/s00127-016-1279-3
Lopez-Martinez, A. E., Esteve-Zarazaga, R., & Ramirez-Maestre, C. (2008). Perceived social support and coping responses are independent variables explaining pain adjustment among chronic pain patients. The Journal of Pain, 9(4), 373-379. https://doi.org/10.1016/j.jpain.2007.12.002
Maes, M., Van den Noortgate, W., Fustolo-Gunnink, S. F., Rassart, J., Luyckx, K., & Goossens, L. (2017). Loneliness in children and adolescents with chronic physical conditions: A meta-analysis. Journal of Pediatric Psychology, 42(6), 622-635. https://doi.org/10.1093/jpepsy/jsx046
Miller, J. F. (1985). Assessment of loneliness and spiritual well-being in chronically ill and healthy adults. Journal of Professional Nursing, 1(2), 79-85. https://doi.org/10.1016/s8755-7223(85)80010-7
Nikolajsen, A., Hedelund, M., & Swane, C. E. (2014). “Palle alene i Verden”-Et kvalitativt studie af voksnes ensomhed midt i livet ["All alone in the world"]. Retrieved from https://www.egv.dk/en/funded-projects/327-all-alone-in-the-world-a-qualitative-study-of-loneliness-among-younger-adults
Ozkan Tuncay, F., Fertelli, T., & Mollaoglu, M. (2018). Effects of loneliness on illness perception in persons with a chronic disease. Journal of Clinical Nursing, 27(7-8), e1494-e1500. https://doi.org/10.1111/jocn.14273
Peplau, L. A., & Perlman, D. (1982). Loneliness: A sourcebook of current theory, research and therapy. New York: Wiley.
Poh, L. W., He, H. G., Chan, W. C. S., Lee, C. S. C., Lahiri, M., Mak, A., & Cheung, P. P. (2017). Experiences of patients with rheumatoid arthritis: A qualitative study. Clinical Nursing Research, 26(3), 373-393. https://doi.org/10.1177/1054773816629897
Riessman, C. K. (2008). Narrative methods for the human sciences. Los Angeles, Calif: SAGE.
Ryan, S. (2014). Psychological effects of living with rheumatoid arthritis. Nursing Standard, 29(13), 52-59. https://doi.org/10.7748/ns.29.13.52.e9484
Salway, T., & Gesink, D. (2018). Constructing and expanding suicide narratives from gay men. Qualitative Health Research, 28(11), 1788-1801. https://doi.org/10.1177/1049732318782432
Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18(2), 179-183. https://doi.org/10.1002/nur.4770180211
Sha'ked, A., & Rokach, A. (2017). Addressing loneliness: Coping, Prevention and Clinical Interventions, Researching Social Psychology, 1. New York: Psychology Press.
Smith, T. (2017). “On their own”: Social isolation, loneliness and chronic musculoskeletal pain in older adults. Quality in Ageing and Older Adults, 18(2), 87-92. https://doi.org/10.1108/qaoa-03-2017-0010
Spiers, J. (2000). New perspectives on vulnerability using emic and etic approaches. Journal of Advanced Nursing, 31(3), 715-721. https://doi.org/10.1046/j.1365-2648.2000.01328.x
Theeke, L. A., Mallow, J., Gianni, C., Legg, K., & Glass, C. (2015). The experience of older women living with loneliness and chronic conditions in appalachia. Rural Ment Health, 39(2), 61-72. https://doi.org/10.1037/rmh0000029
Tiwana, R., Rowland, J., Fincher, M., Raza, K., & Stack, R. J. (2015). Social interactions at the onset of rheumatoid arthritis and their influence on help-seeking behaviour: A qualitative exploration. British Journal of Health Psychology, 20(3), 648-661. https://doi.org/10.1111/bjhp.12134
Valtorta, N. K., Kanaan, M., Gilbody, S., Ronzi, S., & Hanratty, B. (2016). Loneliness and social isolation as risk factors for coronary heart disease and stroke: Systematic review and meta-analysis of longitudinal observational studies. Heart, 102(13), 1009-1016. https://doi.org/10.1136/heartjnl-2015-308790
Weiss, R. S. (1973). Loneliness: The experience of emotional and social isolation. In Cambridge. Mass: The MIT Press.
World Medical Association. (2013). WMA declaration of Helsinki: Ethical principles for medical research involving human subjects. (Publication no. https://doi.org/10.1001/jama.2013.281053). (0098-7484). http://www.wma.net/en/30publications/10policies/b3/