Objective. Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease that significantly impairs patients' quality of life and can be life threatening. This study aimed to describe the experiences and perspectives of adults living with SLE. Methods. We conducted a systematic review and thematic synthesis of qualitative studies that explored the experiences of adults living with SLE. We searched MEDLINE, Embase, PsycINFO, CINAHL (to November week 1, 2012), Google Scholar, a thesis database, and reference lists of relevant articles. Results. Forty-six studies involving 1,385 participants were included. Five themes were identified: restricted lifestyle (including subthemes of pervasive pain, debilitating fatigue, mental deterioration, disruptive episodic symptoms, and postponing parenthood), disrupted identity (gaining diagnostic closure, prognostic uncertainty, being a burden, hopelessness, heightened self-consciousness, fearing rejection, and guilt and punishment), societal stigma and indifference (illness trivialization, socially ostracized, and averse to differential treatment), gaining resilience (optimism, control and empowerment, being informed and involved, and valuing mutual understanding), and treatment adherence (preserving health, rapport with clinicians, negotiating medication regimens, and financial burden). Conclusion. SLE has a severe and pervasive impact on patients' self-esteem and independence. Their physical and social functioning is limited and they feel anxious about their future. Patients perceive that SLE is trivialized, misunderstood, and stigmatized by their family, friends, and physicians, which intensifies their sense of isolation. Educational, psychosocial, and self-care interventions are needed to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation, and thereby to achieve better treatment and health outcomes in patients with SLE. INTRODUCTIONSystemic lupus erythematosus (SLE) is a chronic autoimmune disease with a relapsing and remitting course that can be life threatening. The disease has a peak incidence in females ages 15-40 years, and the prevalence of SLE is higher in nonwhite populations (1-4). Although treatment advances have reduced mortality rates in SLE, patients still experience impaired quality of life (QOL) and long-term morbidity (3,5-7).The debilitating pain, musculoskeletal manifestations, fatigue, and renal and cutaneous problems can limit patients' ability to work and participate in family and social activities (8 -10). The psychological and cognitive impact of SLE can have an adverse effect on physical functioning and disease activity (10 -12). Depression may be associated with greater physical disability, and low self-esteem has been found to be associated with greater cumulative organ damage (13). Moreover, studies have identified discordances between patients and clinicians in their perceptions of disease burden and activity, and consequently this can lead to poor treatment adherence, d...

Objective. To describe the experiences and perspectives of children and adolescents living with juvenile idiopathic arthritis (JIA). Methods. We conducted a systematic review of qualitative studies that explored the experiences of children living with JIA. We searched electronic databases (to week 2 of July 2011) and reference lists of relevant articles. Results. Twenty-seven studies that reported the experiences of more than 542 participants were included. Six major themes were identified: aversion to being different (unrelenting and unpredictable pain, disablement, internal disfigurement, differential treatment, and forced dependency on others); striving for normality (preserving social identity, resourcefulness, sense of community, focus on remission, and mastery over body and pain); stigma and misunderstanding (trivialization of disease, invisible pain, and discrimination); suspension in uncertainty (control versus powerlessness, hope versus disappointment); managing treatment (benefits of taking medicines, respect and involvement in health care, and motivation for physical therapy); and desire for knowledge (medical treatment and advances, lifestyle management). Conclusion. JIA disrupts a child's sense of normality and impairs his or her capacity for social participation. Children with JIA have a sense of being misunderstood and stigmatized, and they feel perpetually caught between having hope and control over their bodies and overwhelming pain and despair. To increase their confidence, the ability to manage pain, and their resourcefulness for self-management, children need ongoing information about treatments and lifestyle management, strong social support, community advocacy, and active involvement in their own health decision making.

A well-coordinated network of services, timely and accurate information about the illness, treatment and support services, adequate pharmacy support, and school-based advocacy are proposed to be needed to ensure pediatric rheumatology services that are accessible and responsive to the needs of patients and their families.

Although an increasing amount of literature has appeared in recent years on the subject of stalking, little is known about mental health nurses' (MHNs) experiences of this phenomenon. The aims of the study were to investigate: (1) the incidence of stalking among a sample of MHNs in the UK; (2) who the perpetrators were; (3) the impact of stalking on MHNs; and (4) how MHNs manage their experiences. Employing a survey design, the British version of the Rutgers-Penn clinicians and stalking questionnaire was distributed to a convenience sample of 400 MHNs in the UK. Data were analysed by means of descriptive statistics and McNemar test. The findings reveal that: (1) 50% (n = 56) of MHNs who completed the questionnaire had been stalked; (2) on the whole, victims were female (78.6%) and stalkers males (82.1%); (3) stalkers were from a variety of social groups including mental health service users and MHNs; (4) victims were threatened, followed, physically assaulted and received unwanted communication; (5) MHNs reported a variety of stress-related (psychological and behavioural) responses to their experiences; and (6) employed a range of coping strategies. This study serves to raise awareness of a number of issues surrounding an under-reported phenomenon in mental health nursing and points to the need for further research to explore the reliability and consequences of the findings.