Caring for a child with Epidermolysis Bullosa: a scoping review on the family impacts and support needs

Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity. Methods: We conducted a scoping review comprising 11 studies (2005-2021) to examine the research literature related to the support needs of parents with a child with EB, and the impact on family unit wellbeing. Results: Most common needs identified were emotional needs, followed by practical needs, social needs and physical needs. Many parents also reported a lack of informational and psychological support. Common findings included emotional stress, lack of respite and physical strain on caring responsibility, financial stress, guilt and impact on relationships and family unit. Conclusions: Few studies exist that explore the support needs of parents of a child with EB. More attention should be paid to the support needs of parents to provide adequate care to those diagnosed with EB as well as their families.