Epidermolysis Bullosa Home Care Programme Expertise

The chapter Expertise discusses the information and instruction that is necessary for appropriate care. Attention is paid to the information the patient / carer needs and the information the careworker should have in order to implement the care adequately.

In addition, this chapter includes exercises for the prevention of fusions and contractures.

In the chapter Standard Care Plan a number of problems that frequently occurs as the result of the disease has been elaborated on.

Information and instruction

Just like the careworkers involved a patient / carer must be well informed about the disease and how the treatment, nursing and care take place. In addition, it is important that the patient / carer is properly instructed on how to implement the procedures involved.

The information and instruction are part of the total care and are provided by a careworker who has experience with the disease. The information has been provided both verbally and in writing as much as possible (see also Home Care Book Epidermolysis Bullosa).

Patient / carer

Aims of the information and instruction to the patient / carer are:

• the patient / carer is informed about the disease, the symptoms and outcomes and is able to point these out;

• the patient / carer is informed about the treatment, nursing and care;

• the patient / carer knows who is involved in the (home care) treatment and who coordinates the care;

• the patient / carer knows the medication / ointments / dressings and nutrients that are used;

• the patient / carer knows how to implement the physical, skin, mouth and dental care;

• the patient / carer knows the importance of good nutritional status;

• the patient / carer knows the importance of the exercises for the prevention of fusions and contractures;

• the patient / carer knows how to act in the case of complications / problems / questions / uncertainties;

• the patient / carer knows in which situations he/she must consult the doctor in attendance or his/her locum.

• the patient / carer is informed about the patient association and the support this association is able to offer;

• the patient / carer is informed about the aids that are available for the support of the activities;

• the patient / carer is informed about the possible adaptations;

• the patient / carer knows how to appeal for benefits and financial contributions.

Careworker

The aims of the instructions for the careworkers are similar to the ones mentioned above with the addition of:

• the careworker knows how to inform the patient;

• the careworker knows how to act in the case of complications and/or problems;

• the careworker is informed about the possibilities for support such as aids, adaptations and provisions;

• the careworker is informed about the psychosocial effects of the disease and the possibilities for support;

• the careworker is able to provide coordinated care.

Exercises

Introduction

This module describes a number of exercises for the prevention of fusions and contractures. Before engaging in the exercises, the attending doctor should be consulted to check whether the exercises will not have any negative effects.

At the end of this module specific exercises for children are discussed.