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Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

Martin, K; Geuens, S; Asche, JK; Bodan, R; Browne, F; Downe, A; García García, N; ... Mayre-Chilton, KM; + view all (2019) Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines. Orphanet Journal of Rare Diseases , 14 (1) , Article 133. 10.1186/s13023-019-1086-5. Green open access

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Abstract

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.

Type: Article
Title: Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s13023-019-1086-5
Publisher version: https://doi.org/10.1186/s13023-019-1086-5
Language: English
Additional information: © The Author(s) 2019. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/).
Keywords: Epidermolysis bullosa, Family, Guideline, Professionals, Psychological, Psychosocial, Recommendations, Social
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
URI: http://discovery.ucl.ac.uk/id/eprint/10076224
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