Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines
| العنوان: | Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines |
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| المؤلفون: | Florencia Pérez, K. Martin, B. Kennedy, Petra J. Mauritz, Kristina Soon, J. K. Asche, G. Jaega, F. Browne, K. M. Mayre-Chilton, Rebecca Cross Bodán, S. Geuens, N. García García, V. Zmazek, A. Downe |
| المصدر: | Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-21 (2019) Orphanet Journal of Rare Diseases |
| بيانات النشر: | BMC, 2019. |
| سنة النشر: | 2019 |
| مصطلحات موضوعية: | 0301 basic medicine, medicine.medical_specialty, Coping (psychology), Evidence-based practice, IMPACT, Psychological intervention, lcsh:Medicine, Review, 030105 genetics & heredity, MAIN PROBLEMS, ADJUSTMENT, Guideline, Recommendations, PATIENT, THERAPIES, 03 medical and health sciences, 0302 clinical medicine, Social, PARENTS, Multidisciplinary approach, QUALITY-OF-LIFE, Health care, SUPPORT, Adaptation, Psychological, medicine, MANAGEMENT, Humans, Pharmacology (medical), Family, Epidermolysis bullosa, Genetics (clinical), business.industry, lcsh:R, General Medicine, Professionals, Social engagement, Family medicine, Quality of Life, Psychological, Psychology, business, Psychosocial, 030217 neurology & neurosurgery, CHRONIC PAIN |
| الوصف: | Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB. An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology. The resulting papers underwent systematic selection and critique processes. Included papers were allocated to 6 different outcome groups to allow data synthesis and exploration: quality of life, coping, family, wellbeing, access to HCP and pain. Based on the evidence in those papers, recommendations were made for individuals living with EB, family and caregivers and HCP working in the field. Few studies have investigated interventions and which factors lead to better outcomes, but general recommendations can be made. EB is a complex disease impacting enormously on every aspect of psychosocial life. People and families living with EB need access to multidisciplinary support, including psychological guidance, in order to improve quality of life and psychosocial wellbeing. Interventions should stimulate social participation to prevent isolation. People with EB and their families should be able to access a supportive network. HCP should be well supported and educated about the complexity of EB. They should work collaboratively with those around the individual with EB (e.g. schools, employers etc.) to provide psychosocial opportunity and care. Attention should be paid to the psychosocial impact of EB as well as physical needs. Directions for research are indicated. Electronic supplementary material The online version of this article (10.1186/s13023-019-1086-5) contains supplementary material, which is available to authorized users. |
| وصف الملف: | Electronic |
| اللغة: | English |
| تدمد: | 1750-1172 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b6bb01696b770950e0a1835bd6ede188 http://link.springer.com/article/10.1186/s13023-019-1086-5 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....b6bb01696b770950e0a1835bd6ede188 |
| قاعدة البيانات: | OpenAIRE |
Find this article in full text from Springer Verlag. | تدمد: | 17501172 |
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