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Treatment Adaptation of living and working environment Introduction The patient's self-sufficiency may be increased by the use of aids and adaptations of the living and working environment. Aids and alterations in the home may also support the carer's activities. Attention given to the support of the self-sufficiency and information on the various options available for this, are part of the treatment/care and care plan of patients with EB. This module briefly describes a number of aids and adaptations. In the description, a distinction is made between aids and adaptations for:
Information on the way in which aids and adaptations may be compensated and requested can be found in the chapter: Financing. In order to support the realization of the aids, adaptations and provisions which are advisable, a realization protocol has been included in the chapter entitled Logbook. Support of ADL The following aids and adaptations may be used for the support of the ADL:
The use of handrails can make it easier to sit down on the toilet or step into the bath.
A bathing chair is used when the patient cannot stand very well. It can prevent falling and bumping.
The use of a mechanical lift can make the care of an EB-patient easier and it can prevent falling, bumping and blistering of the patient during lifting. When it is used, attention should be carefully taken to prevent rubbing and friction when the patient is placed onto the lift.
Sometimes the hard jets of a normal shower head are far too painful and/or damage the skin. In this case a vapo-rizing shower head might provide an alternative. The fine vapour from a shower head generally cools off quickly. Therefore, the showerhead should be adapted in order to maintain an adequate temperature of the vapour. The use of vaporizers could also be considered. These vaporizers are installed in a regular place in the shower and spread a fine vapour.
The use of toilet paper may sometimes cause blisters. A toilet with a sprinkler and dryer might be an option then.
Defecation often requires a lot of time. The use of an adapted commode provides more comfort than an ordinary toilet.
This may simplify sitting down on the toilet.
Single grip-controlled taps are used when it is not pos-sible to turn on a tap. The tap is preferably equipped with a thermostatic protection against excessively hot water.
The use of an electric toothbrush may be more effective and less painful than a normal toothbrush. The electric toothbrush must be held properly, handling the brush should not present any problems and the brush must be soft. • Tube-dispenser A tube-dispenser may be used to put the toothpaste onto the toothbrush.
When the patient cannot or insufficiently use a(n) (electric) toothbrush a mouth spray might be used. The jets of the mouth spray should not be too hard.
When the washbasin is used both in a sitting and up-right position a height adjustable washbasin is to be recommended. The wheelchair, bathing chair or stool should fit under the washbasin without the patient bumping into the trap. When the washbasin is adjustable in height, the mirror above the washbasin should be adjustable, too.
The care of an EB-child is very time-consuming. It is important that the height of the worktop (for example on the chest of drawers) is adapted to the carer's height and working method. When more carers are involved in the child's care a height adjustable worktop should be considered. The worktop (whether it is adjustable in height or not) should not cause blisters or wounds. The worktop should be supplied with a soft surface (for example, a small mattress, pillow or dressing pad). The child should not be able to roll off the worktop. Sites and protrusions of the worktop should be supplied with soft padding (for example, a pillow, a small blanket, foam rubber, etce-tera).
An examination couch that is adjustable in height is sometimes used for the provision of skin and wound care of older children or adults. The mattress of the examination couch should be soft and supplied with a soft cotton cover. Sites and protrusions of the examination couch should be supplied with soft padding (for example, foam rubber).
Patients with a kyphosis sometimes need a bed with an adjustable head to be able to lie comfortably in bed. The patient should not slump in bed because this may result in blistering through rubbing.
The use of a chair with footrest may give some respite to the hips, knees and legs. Support of DDL (domestic activities of daily living) The following materials and adaptations are used by EB-patients to support the DDL:
A ceramic boiling ring with touch control prevents burning and does not require the turning of knobs. For cooking lightweight pans are used with large handles. Water can be boiled with a lightweight electrical cooker.
A key extender makes it easier to hold and turn the key.
A door which can be unlocked and automatically opened by pressing a button on the remote control simplifies enter-ing, especially if the patient cannot move his/her arms or hands properly or if the patient is wheelchair-bound.
If the handling of a normal phone constitutes problems it might be worth considering the purchase of a phone with large function keys which provides the additional possibility of programming the numbers and phoning without having to hold the handset (the so-called hands-free phoning).
In selecting a computer and printer attention should be paid to the way the key board operates, switches on and off, the accessibility of the disk drive and the use of a mouse. Protection against heat and sunlight To accommodate the environmental temperature according to the patient's wishes the following aids might be useful:
For a constantly cool temperature in the house and/or living and working environment.
For cooling the skin. Caution should be exercised so the fan does not irritate or damage the eyes.
To avert direct sunlight on to the skin.
To protect the eyes against (bright) sunlight. The sunglasses should not cause blisters on the nose, forehead or ears.
To avert direct sunlight on to the skin or eyes. The cap or sunvisor should not cause blisters on the forehead. See Physical Care. Support of mobility The following aids and/or measures may increase mobility:
Footwear must fit the EB-patient properly, in particular, to prevent blistering. This may sometimes require orthopaedic footwear or sometimes even ready-to-wear footwear is satisfactory. Some special sportshoes have especially proven their worth. Many EB-patients find it difficult to find footwear that fits properly. It is often a matter of trying them out for size and comfort.
A stroller gives support when walking and prevents falling. The handles of the stroller must be soft to prevent blistering to the palm of the hand. The stroller should be supplied with good, easy to operate brakes in order to prevent the patient from falling still forward.
A large pushchair for children that have outgrown the normal buggy and are not (yet) ready for a wheelchair.
A wheelchair should fit sufficiently; the patient should not slump. In addition, there should be an even distribution of pressure on the skin to prevent blistering.
The thresholds in the house must be removed to diminish the risk of falling and/or when a stroller or wheelchair is used in the home.
The installation of a stair lift in the home should be considered if the patient is physically unable or hardly able to use the stairs or get to a bathroom/shower. The placement of a stair lift must be technically feasible. In a rented house, the proprietor will have to grant permission for such a provision.
A tricycle is a good option when the patient is physically able to cycle but cannot use a normal bike because of blisters and contractures. • Scooter mobile The scooter mobile is a tricycle which moves on by means of batteries. When the battery is full the scooter mobile has a radius of action that (depending on the type of scooter mobile) varies from 30 to 45 kilometres. Examples of a scooter mobile are BoosterŪ and SterlingŪ.
The car has preferably the following adaptations or provisions:
Transport allowances can be subdivided into taxi allowance, living mileage allowance and reimbursement of travel expenses made getting to and from school or work. A taxi allowance or living mileage allowance can be applied for when the patient is physically unable or hardly able to make use of public transport. |
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