Living With Rheumatoid Arthritis in Spain: A Qualitative Study of Patient Experience and the Role of Health Professionals

被引:7
|
作者
Pedraz-Marcos, Azucena [1 ,3 ,4 ]
Palmar-Santos, Ana Maria [1 ,3 ,4 ]
Hale, Claire Anne [5 ]
Zarco-Colon, Juan [2 ,3 ]
Ramasco-Gutierrez, Milagros [3 ,6 ]
Garcia-Perea, Eva [1 ,7 ]
Velasco-Ripoll, Teresa [8 ]
Martin-Alarcon, Josefina [9 ]
Sapena-Fortea, Nuria [9 ]
机构
[1] Univ Autonoma Madrid, Dept Nursing, Madrid, Spain
[2] Univ Autonoma Madrid, Dept Sociol, Madrid, Spain
[3] UAM, Grp Invest Cualitat Salud GIQS, Madrid, Spain
[4] Inst Invest Sanitaria Puerta de Hierro IISPH, Madrid, Spain
[5] Univ Leeds, Sch Hlth Care, Nursing, Leeds, W Yorkshire, England
[6] Reg Govt Madrid, Dept Prevent Promot & Educ Hlth, Madrid, Spain
[7] Inst Invest Sanitaria Gregorio Maranon IISGM, Madrid, Spain
[8] Hosp La Princesa, Madrid, Spain
[9] Hosp Clin Barcelona, Barcelona, Spain
关键词
arthritis; clinical research areas; qualitative methods; pain; advanced practice nurse; NURSE-LED CARE; EULAR RECOMMENDATIONS; PATIENTS VIEWS; PEOPLE; OUTCOMES; FATIGUE; DISEASE; MULTICENTER; MANAGEMENT; EDUCATION;
D O I
10.1177/1054773818791096
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
The aim of this study was to explore the experience of Spanish people living with rheumatoid arthritis (RA) and the support these people received from health professionals, particularly nurses. Nineteen patients with >1 year diagnosis, disease activity moderate or severe (DAS28 > 3.2), and already treated with disease-modifying antirheumatic drugs (DMARDs) were interviewed. A thematic analysis was performed to interpret the discourses. The difficulties of symptom management; the need for home-adaptations, the difficulties of living with a deteriorating self-image; and the reluctant reliance on medication to control their disease were the main themes that emerged from the discourse analysis of this study. Nurses appeared to have a limited role in RA patients care, and focused primarily on giving information and training for biological therapies. RA patients in Spain would benefit from having contact with specialist nurses who could empower them to self-manage their disease, as happens in other countries.
引用
收藏
页码:551 / 560
页数:10
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