Epidermolysis bullosa

There are factors which have an influence on pain, especially during the cures: factors of the minor with EB (anticipatory anxiety, negative thoughts, lack of collaboration, etc.), of the parents or caregivers (negative expectations, worry and anxiety, stress, etc.) and of the global situation (inappropriate environment, stressing behaviours of the surroundings, etc.) (Figure 7).

It has been observed that reducing the stress of the main caregivers favours the management of pain in the patients. There are other factors influencing pain positively: factors of the minor with EB (feeling of courage and positivity, active coping strategies, participation during the cures), of the parents or caregivers (management of their own stress, giving instructions and tools to the minor, encourage, praise and reinforce the positive behaviours) and of the global situation (quiet and adequate environment, proper preparation, planned procedures without startles as much as possible) (Figure 8).