On the basis of the care needed it has been established what should be done and also how it should be done. In the home care programme, the resulting conditions concerning expertise, materials, organization of care and the supply of information are applied to practice-oriented instruments. The Home Care Programme Epidermolysis Bullosa contains among other subjects:

• an integrated description of care;

• aids for the actual provision of care, such as background information, a care plan, exercises;

• aids for the organization of care, such as suggestions for a multidisciplinary approach and means for communication and the supply of information (logbook);

• information on dressing materials, ointments and nutrients;

• financing options by health insurances (currently only applies to materials and medication);

• information the patient can use to inform the people concerned.

The different parts can, if necessary, be adapted to the local circumstances. KITTZ - home care programmes are primarily aimed at the regular careworkers. In addition, information was recorded to give optimal support to the autonomy of the patient and carers (such as partner, parents, housemates) optimally.

Note:

A home care programme consists of various modules. Each part and each module can be used separately. Each module consists of a number of pages. The number of pages is indicated at the bottom of each page along with the subject of the module. For example: Bandages 1 (of 5).

The modules are grouped in chapters. The file tabs indicate the different chapters. Moreover, the header of every module

indicates to which home care programme and to which chapter the module belongs. For example, Home Care Programme Epidermolysis Bullosa; Materials & Medication.

The Home Care Programme Epidermolysis Bullosa describes the disease and its treatment and gives information on the materials involved. The home care programme does not state who has to perform which task. It can be the district nurse or the GP but also the consultant and/or nurse of a clinic that is specialized in Epidermolysis Bullosa. For the treatment of an individual patient, a personal selection is made from the modules of the home care programme. This selection is based on the needs of the patient and his/her care plan. The selection also depends on who will actually be using the material.

The Home Care Programme Epidermolysis Bullosa can fulfil several functions but has especially been established to inform careworkers who are unfamiliar with the disease and the patient category. A few examples are:

`A ward of a specialized clinic calls a home care organization or another hospital with the question of whether or not a patient can appeal to them for further treatment / nursing and/or invites a careworker for a multidisciplinary meeting at the centre. The ward is in charge of informing the organization and careworkers involved about the disease and treatment by sending them (parts of) the home care programme. In this way the organization and/or careworker can prepare themselves for the patient's discharge and/or the multidisciplinary meeting.'

`The patient / carer appeals to a careworker who has no previous experience with the disease. The patient can point out the existence of the home care programme to the careworker as a book of information for careworkers so that he/she does not have to provide all the information.'