Standard Care Plan Epidermolysis Bullosa Introduction The treatment / nursing / care of the patient with Epidermolysis Bullosa focuses on the one hand on the prevention and treatment of symptoms (see chapter Treatment). The goals that are aimed for in this are:
On the other hand, the treatment / nursing / care is aimed at removing or compensating problems perceived and/or deficits as a result of the disease: the restrictions and/or handicaps in daily activities. This chapter describes the interventions that might be implemented and are aimed to relieve the effects of the disease for the patient as much as possible. To this end, the system of the standard care plan can be used. The structure of the standard care plan is as follows:
The formulated problems have a general nature. For each problem a number of symptoms are mentioned that indicate how the problem may present itself. In addition, a number of causal and/or relating factors are mentioned that may play a role in the formulated problem of the patient. For the individual patient, the generally formulated problem may be described more specifically. The general problem: For example, the patient is completely / partially restricted in her/her ADL, might be specified for an individual patient into: The patient is restricted in the care of blisters as a result of restricted mobility due to contractures. The objective states the desired or feasible end situation. This objective relates to the generally formulated problem. For the individual patient the more specifically formulated problem may also produce an adjusted objective or aim. Use of Standard Care Plan Epidermolysis Bullosa The Standard Care Plan describes the most frequent problems in Epidermolysis Bullosa and possible interventions to solve or deal with the problems. The problems and interventions in the Standard Care Plan may serve as a reference point for the user; they give food for thought, structure the analysis of and reflection on the various problems. For the individual patient the problem has to be made more specific first before specific interventions can subsequently be applied.Furthermore, it is not indicated at the interventions which discipline must/can perform which task. Background information about the problems, symptoms and interventions mentioned, is described in the chapters Disease, Treatment, Materials & Medication and Expertise. Depending on the nature of the problem, the intervention may include providing information and/or instruction, the use of aids, supervising, or completely or partially taking over the self-care activities. In the case of moderate complaints the emphasis in the care provided lies on supervision. This may consist of providing suggestions and instructions related to self-sufficiency, for example, in the field of ADL and DDL. In addition it is important to take measures to anticipate the course of the disease, such as avoiding triggering factors as much as possible, the use of aids or adaptation of living and working environment. When serious effects of the disease are present, there will be an emphasis on physical care and nursing in the care provided. It is important to keep the physical health and mobility to an optimum. This means for example, attention should be paid to the diet, to the per-formance of activities and to the continuance of social interaction Principles Before going into the various problems, objectives and inter-ventions, this section formulates a number of principles that may be important for the choice and implementation of the interventions.
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