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Epidermolysis Bullosa
Home Care Programme

Standard Care Plan Epidermolysis Bullosa

Patient is entirely or partially restricted in ADL

Symptoms:

* The patient / carer makes comments that point to problems with ADL

* Decrease or avoiding ADL

* Neglect

Objective:

* The patient is able to perform his/her ADL.

Causal or relating factors Actions / Interventions
  • functional loss of extremities because of contractures
  • exercises to increase function of

    extremities and counteract the effects of the contractures

  • functional loss of hand because of webbing, acquired syndactyly
  • recommend aids, such as:
  • single grip-controlled tap;

- electric toothbrush.

  • functional loss of hand because of dressing
  • recommend performing tasks without

dressings

  • fear of injury
  • recommend protecting the hands (for
  • example, with cotton gloves)
  • recommend organising 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)

  • fear of pain
  • work out how the task may be per- formed differently without

    causing pain (possibly with aids)

  • deficient eyesight
  • recommend structuring of the
  • activities
  • recommend storage of the materials
  • in a regular place
  • consider the use of aids
  • fatigue due to poor

    nutritional status

  • optimise nutritional status
  • work out how the tasks may be

    performed differently (possibly with aids) so activities will be less tiring

  • lack of adaptations to the

    house or aids

  • recommend adaptation of housing conditions and living environment such as:

- adjustable in height work top

- bathing chair

- handrails in toilet and bathroom

  • taking over ADL