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Epidermolysis Bullosa
Home Care Programme

Standard Care Plan Epidermolysis Bullosa

Patient has lack of knowledge on how to prevent skin damage

Symptoms:

* The patient makes comments that point to a quick damaging of the skin after a slight skin contact

* The patient makes comments that point to a lack of knowledge on how to diminish the chance of skin damage.

Objective:

* The patient knows how to diminish the danger of skin damage.

Causal or relating factors Actions / Interventions
  • none or insufficient information about measures to prevent skin damage
  • recommend protection of skin through dressing material
  • recommend performing tasks with dressings on
  • recommend protecting the hands (for example, with cotton gloves)
  • recommend optimizing the nutritional status (see interventions in: The patient has difficulties in obtaining or maintaining a good nutritional status)
  • recommend organizing the space in which tasks are performed in such a way that injuries will be prevented (for example, by protecting edges and sharp corners with foam plastic)
  • work out how the tasks may be performed differently (possibly with aids) so activities will cause fewer physical injuries
  • recommend adaptation of housing conditions and living environment such as:
  • handrails in the bathroom and toilet;
  • toilet that is adjustable in height;
  • padding;
  • good lighting.
  • recommend structuring of the activities
  • recommend storage of the materials in a regular place
  • dry skin
  • recommend good skin care:

- add bathing oil to the bathing water

- do not use soap

- keep skin lubricated by putting cream or ointment on

  • disrupted sensory perceptions (because of disruption of the sense of touch)
  • recommend protecting the hands (for example, with cotton gloves)
  • recommend organizing the space in which tasks are performed in such a way that injuries will be prevented (for example, by protecting edges and sharp corners with foam plastic)
  • (excessive) exposure to heat and/or sunlight.
  • provide a constant environmental temperature which is not too warm:

- recommend the use of fans, air-conditioning, awnings, etcetera.