Are you a rare disease nurse? Genetic Alliance UK have been working with the Rare Disease Nurse Network to help set up a peer-to-peer support group for rare disease nurses and care coordinators. To help connect the rare disease nurse community, they invite nurses and care coordinators to take part in this short survey here: https://www.surveymonkey.co.uk/r/RareDiseaseNurseNetwork…
During the past decade, Behçet’s disease (BD) has received focused attention from the biomedical and health sciences; however, the psychological aspects of this disease are still very poorly understood. A team of academic researchers from Liverpool Hope University and Bournemouth University, in collaboration with clinical psychologists from Aintree Hospital in Liverpool, have launched a series of surveys aiming to understand psychological factors of BD.
In a recent paper, published in the Journal of Clinical Rheumatology, they showed that illness perception in BD differs from that of patients with rheumatoid arthritis and cardiovascular disease. For example, people with BD have significantly lower personal control over the illness and treatment, and higher emotional responses, identification with the illness and understanding. Furthermore, patients with BD are more emotionally distressed, which negatively influences emotional adjustment, health-related outcomes and non-adherence to treatment.
The results of this study showed that the way BD patients perceive consequences of BD and identity with the illness mediates the link between symptom activity and pain. Moreover, emotional components of the illness strongly relate to disease activity and energy level.
This study suggests potential directions for clinical psychologists and healthcare practitioners in developing support programmes. For example, targeting perception of the disease identity and perception of the anticipated consequences of BD may reduce sporadic pain-related psychological and physical functions, both alone and as an adjunct to other treatment. Of potential interest for the cognitive behavioural interventions may be specific emotions underlying emotional representations about BD such as embarrassment, guilt and sadness.
People who live with BD need support from partners, family members and friends. At this time, we have a limited understanding of the role of close social support in alleviating the impact of negative emotional appraisal in BD patients. Research linking the effects of social support, negative emotional appraisal and life satisfaction will help to facilitate programmes for patients to enable them to do the things that are important to them, as well as for their families and their close support network to develop the skills necessary to provide support for people with BD.
Addressing psychological aspects of BD will help to manage complex patients effectively. If you would like to help with this research, please complete the survey available at: https://lhubos.onlinesurveys.ac.uk/the-relationship-between-affects-and-perceived-heath-statu
The Government began this consultation process just before the …
summer holiday ‘Personal Independence Payment (PIP) assessment: second independent review call for evidence. The consultation closes on September 16th at 5pm.