Epidermolysis bullosa

Next, we will offer strategies that can be useful to manage the pain during childhood keeping in mind the peculiarities of each case. 

• Progressive muscular relaxation (requires training), relaxation through breathing (synched breathing with the parents, blowing soap bubbles, inhale and exhale imagining the air coming in through the nose and filling the body paused and slowly, etc.) and the mindfulness (focusing on the parts of their body, smells, flavours, etc.).
• Expressing their emotions aloud. For example, yell before fear (“roaring like a lion”).
• Distraction during the cure, with compatible activities with its realization: watching a movie or cartoons, listening to audiobooks, telling stories, etc. It can be useful to have a distraction box available and let the child choose one of the distraction strategies before the cure. Other activities: looking for everything of a certain colour, playing “I Spy”, imagine or fantasize about pleasant things not related to the pain (telling jokes, singing, playing with puppets, remembering positive anecdotes, etc.).
• Changing negative thoughts for positive ones. It is useful to start the dressing changes with as many positive thought as possible, but if the negative ones are already established we can be aware of them and try to modify them. For example: “No one can help me” is a negative thought which can be changed for “the best I can do is help myself”. In case of the negative thoughts persisting, the “STOPsign method” can be used: imagine a STOP sign which tells your thoughts they cannot go past it, or give encouragement instructions, as “I can do it” or “It is almost over!”.
• Keeping close by during thecures figures or dolls for which they have special attachment and respect (“heroes and heroines”) (Figure 9). They will provide them with encouragement and strength in the difficult moments, for example thinking “What would my hero/heroine do in this situation?”
• Participating in the cure (preparing the material, removing the bandages of certain parts, draining some blisters, cleaning some wounds, applying some products, etc.), and taking part of the process of decision making.
• Role playing before the cures in which the child imagines themselves making the cure on someone else and/or doll, in this way trying out different strategies, emphasizing with the caregivers, etc.