Finally you are preparing to bring your child home – an important part of the transition is to consider how care will be provided in this setting. While life in the hospital is usually centred in one room (where everything happens), life at home is very different. A home visit by your child’s healthcare team can be invaluable in evaluating your home space and determining where care can be safety provided.

If possible, designate at least one area of your home as a place where your child can feel completely secure and not associate with medical or nursing interventions. Ideally this safe place is your child’s bed, which is associated with relaxation and rest. For children who require care around the clock, this may not be possible. Use other strategies, like the pediatric approach, distraction and positioning to optimize your child’s comfort when interventions are required.

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General considerations
Tips to get started



General considerations

To set up an appropriate space for care at home, consider the following questions:

What are your child’s main care needs?

What equipment/materials/facilities do you need to provide your child’s care?

How will waste be managed safely?

 


What are your child’s main care needs?

Along with your child’s healthcare team, make a list of all the different types of daily care that your child requires. This list may change so be prepared to make adjustments accordingly. Once you know what care your child needs, consider how you will sequence the tasks and where care will be provided.


What equipment/materials/facilities do you need to provide your child’s care?

In each of the practices of care described on this website, see Required materials to know what materials you require to provide the care. Always check this list with your child’s healthcare team. Plan to have at least a one month supply of all materials on hand at any time. If your funding situation allows, keep a 2-3 month supply of materials, if expiration of materials is not an issue. Keep a 2-3 day supply of materials in your packed travel bag so that getting out of the house, for whatever reason, is quicker and safer.

Consider whether your child’s equipment requires a power supply or battery recharging, identify the power outlets in the room and make sure that extension cords are appropriate for safety.

Many types of care take place with the child in a seated position or lying down. Identify where your child may sit or lie and position equipment nearby. If a surface is required to prepare materials, then place a table adjacent to where your child will be positioned. A table on wheels, with storage in drawers underneath, is something that many parents have found helpful. Label drawers so that it is easy to locate items; you may wish to use colour coding for different types of supplies to make access quicker.

Ensure that the place where you provide care has adequate lighting. As a reminder to the steps of care required, print out the Methods of care: summary (or make your own summary) and post it close to where care will be provided.

Keep a detailed list of all the equipment and materials that your child requires and store it in your child’s care organizer along with the instructions on re-ordering materials and key contact information related to equipment and materials.

Ask your child’s healthcare team for information about:

What to do if equipment malfunctions, is lost or stolen,
Whether your child requires spare equipment,
What adaptations are required for travel (by car, by plane, etc).


How will waste be managed safely?

For many children with medical complexity, the care that is required generates significant waste, especially with packaging of materials. Consider the different types of waste that may be generated and how they should be safety disposed. Talk to your child’s healthcare team for instructions specific to your child’s care.

Urine, stool collected in an ostomy bag: collect in a washable container, flush down toilet.

Other body fluids (for example, drainage from a gastrostomy tube): put in regular garbage if sealed in a bag or flush down toilet.

Paper packaging of materials: recycle if possible.

Empty plastic tubing: regular garbage, recycle if this is permitted in your area.

Needle sharps: ALWAYS dispose of sharps in a container designed specifically for this purpose; ask your child’s healthcare team how to obtain one and where to bring it for disposal.

Used dressings, bandages, protective coverings: regular garbage.

 


Tips to get started

Here is a summary table of basic considerations to get started. Talk with your child’s healthcare team and other parents for more suggestions.

Storage for equipment and extra supplies
Details Tips
  • Find a dedicated space without humidity.
  • Shelving in a closet or a cupboard (with labels!) will allow you to quickly see what is available and what needs to be re-ordered.
  • Inexpensive shelving is available at many home improvement stores.
  • Routinely assess supplies for quantity, appropriate sizes, etc.
  • A place for every item, each item in place! Don’t waste your valuable time hunting down misplaced items. Make sure all caregivers respect the organization system for equipment and supplies.
  • In order to estimate how much storage space you need, talk with your child’s healthcare team about specific equipment and quantity of supplies that you should have on hand.
  • Always consider daily care requirements AND emergency situations… have at least a 2 week supply on hand at all times.
Refrigerated space
Details Tips
  • Some medications and nutrition require refrigeration.
  • For safety, find a dedicated space that avoids contact and possible contamination with food items.
  • Use a locked container, drawer or a separate refrigerator to safely store your child’s medications and/or nutritional products.
  • Ideally, store medications close to where care is provided so that there are fewer steps lost each day in providing care to your child.
  • If this is not feasible, consider using a cart on wheels or baskets to transport items from storage to the site where care is provided.
Site of care
Details Tips
  • Depending on the care that your child requires, consider whether you will need access to a sink or toilet.
  • Avoid drafts which may contaminate the preparation of equipment or materials.
  • Verify that the electrical supply is grounded and sufficient for the equipment that is required.
  • If possible, identify zones in your home for care interventions and zones that are dedicated to play, learning and relaxation.
  • In general, store equipment and materials as close as possible to the site that care is provided.
  • If feasible, consider giving your child a choice in the location where care will be provided.
Work surface with storage underneath
Details Tips
  • A storage cart with a work surface on top and drawers underneath is helpful for many types of care.
  • Consider a cart of wheels so that it can be brought close to the site of care when needed and then put away for storage.
  • Add hooks or a pole to the storage cart for added versatility.
  • Label storage drawers underneath the work surface for rapid access of needed items.
  • Keep the cleaning supplies for the work surface within easy reach (eg, paper towels and cleanser).
Appropriate lighting
 Details Tips
  • Ensure good visibility for preparation and provision of required care.
  • A wall mounted light may save floor space, if this is a concern.
  • A bedside lamp or a flashlight near your child’s sleeping area (and yours!) may be useful if you need to check your child at night and want to avoid waking your child (and other family members).
Access and maneuverability
Details Tips
  • Remove clutter and unnecessary items from your home, especially the space where care will be provided.
  • Put heavier equipment on wheels so that it can be easily moved.
  • Consider storage carts with wheels to organize equipment and supplies.
  • Remove carpets, if possible.
  • Move the furniture to make space.
  • If there is an entrance step into a room, consider installing a ramp.
  • Talk to your child’s healthcare team to learn how your home may require adaptation to your child’s needs. For those living in Quebec see: Residential Adaptation Assistance Program.
Important information
Details Tips
  • Keep care information (like a binder of care information) and your child’s care organizer in a visible location that is accessible to all care providers.
  • Have a travel bag, packed and ready to go; consider keeping it near the exit of your home.
  • Print and paste on the wall where care is provided:
    • the main methods of care;
    • medication schedules, with time, dose and volume;
    • the contact information of your child’s care team, pharmacy and equipment providers; and,
    • the order number of any required materials (eg, dressings).
  • Along with a binder of care information, consider a “communication book” so that various caregivers can leave comments and information for each other.
Waste management
Details Tips
  • Ensure the safe disposal of biomedical waste. In general, body waste (urine and stool) should go either in the toilet or garbage (eg, soiled diapers).
  • Never use the kitchen sink for this type of waste to avoid contamination with food preparation. Talk with child’s healthcare team for specific recommendations.
  • A special container for the collection of the needles and sharp objects is important for safety.
  • Talk with your pharmacist to determine the best method to dispose of expired medications.