purpose

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Part 1
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purpose
Home care The road to independence, describes
how home care can empower you to take control of
a bleeding disorder. Taking such a road requires
clear directions and signposts along the way. It
is a road that can be safely navigated with the
help of guides on your journeythe members of the
comprehensive care team at the hemophilia
treatment centre (HTC).
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overview

1. benefits and risks of home care
2. types of home care
3. starting on a home care program
4. assessing bleeds
5. treating bleeds

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benefits of home care
home care

• treats bleeds more quickly
• avoids delays in travelling to the hospital and
  waiting for treatment
• makes it easier to follow a prophylactic
  treatment program
• helps the family gain confidence in caring for a
  child with a bleeding disorder and a greater
  feeling of control over their lives
• allows the person and his family to be more
  independent of the health care system

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benefits of home care
home care

• reduces the number of in-hospital stays and
  outpatient visits
• reduces disruption to the family's daily
  activities
• fosters a strong partnership between the family
  and the comprehensive care team
• allows the person and his family to participate
  in normal social, school and work activities
• makes travel easier and safer.

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risks of home care
several problems may occur when a person is on a
home care program

• a bleed not being treated properly
• poor response to treatment
• mistaking another health problem for a bleed
• improper storage of clotting factor concentrates
  and other medications
• infection or damage to veins or the venous access
  device
• injury to other family members.

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risks of home care
ways to reduce the risks of a home care program

• Communicate immediately with the comprehensive
  care team when
• the person has an injury to a critical part of
  the body (head, neck, throat, chest, stomach,
  eye)
• bleeding is heavy
• a bleed does not respond to standard treatment
• one joint has several bleeds in a short time
• the person has an allergic reaction
• you are not sure what to do
• Be well informed.
• Communicate frequently with the comprehensive
  care team to discuss general concerns around
  managing bleeds and home care.
• Keep accurate home care records of bleeds and
  treatments.
• Regularly review home treatment procedures with
  the
• comprehensive care team.

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types of home care
there are two approaches to home infusion

• On-demand therapy - The infusion is given as soon
  as the patient or his caregiver is aware of a
  bleed. The goal is to promptly stop the bleed.

• Prophylaxis therapy - The patient receives
  regular infusions of clotting factor
  concentrates, usually one, two or three times a
  week. This is done in order to prevent bleeding
  episodes from happening.

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types of home care
there are three types of prophylaxis

1. Long-term prophylaxis the most common type of
   prophylaxis. Infusions of factor concentrates are
   given over a period of many years.
2. Short-term prophylaxis often used to halt the
   development of a target joint. Infusions are
   given over a period of 3 to 6 months. Also used
   after surgery.
3. Occasional prophylaxis infusions are given
   prior to participating in an activity that may
   have a high risk for causing bleeding.

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types of home care
home treatments with desmopressin or cyklokapron

• Some people with bleeding disorders are able to
  treat their conditions with a drug called
  desmopressin. These include people with
• some types of von Willebrand disease
• some types of platelet function disorders
• mild or moderate factor VIII deficiency
  (hemophilia A).

Desmopressin can be infused intravenously (in a
hospital only), injected subcutaneously or
inhaled by nasal spray.
An antifibrinolytic called Cyklokapron can also
be administered at home. It is taken by mouth.
desmopressin A Guide for Patients and their
Caregivers cyklokapron A Guide for Patients and
their Caregivers available online at
www.hemophilia.ca/en/educational-material/printed-
documents/relevant-to-all-bleeding-disorders
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starting on a home care program
the comprehensive care team and the family will
make a joint decision about when it is best for
the child to begin a home care program

• There is no standard age for starting.
• Ideally, a home infusion program begins before
  the child starts school.
• Parents are responsible for a child's home care
  therapy.
• Small tasks suitable for the childs age
  encourage him to learn about his care.
• The child who has been involved with treatment at
  home learns the steps and becomes more
  responsible as he gets older.
• It is never too late to learn. A person who has
  chosen not to treat himself or his child may one
  day decide to do so.

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starting on a home care program
before starting a home care program, the patient
or his caregiver must show that he can

• describe the bleeding disorder accurately
• recognize and describe the symptoms of different
  types of bleeds, and the best ways to treat them
• prepare and infuse factor concentrate safely
• store factor concentrate safely
• dispose of used equipment safely
• recognize and describe when to contact the HTC to
  discuss bleeding episodes
• keep a regular routine of attending clinics at
  the HTC
• keep accurate treament records and submit them at
  agreed intervals.

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assessing bleeds
learn to assess. know your limits.

• Always be in close contact with your
  comprehensive care team.
• When in doubt, treat.
• Learn locations of the body where bleeds can be
  serious or life-threatening head, neck and
  throat, chest, abdomen, and eye.
• Learn what to look for and what to do.
• Learn when to go to the HTC or emergency
  department for help.
• Any bleed associated with a large blood loss is
  also considered serious.
• Any bleed that can result in permanent loss of
  movement (in the forearm, calf muscle, iliopsoas
  muscle) is considered serious and
  limb-threatening.

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treating bleeds
10 important points to remember

1. Treat at the first sign of bleeding, even if the
   person is on prophylaxis!
2. If unsure, contact your HTC or go to the nearest
   emergency department.
3. Use rest and elevation along with factor
   concentrate or desmopressin.
4. Use the right amount of clotting factor
   concentrate for the type of bleed.
5. Always use the complete vial of factor
   concentrate unless HTC advises otherwise.
6. Never infuse alone. Make sure someone else is
   there.
7. If the factor concentrate will not dissolve, if
   the liquid is not clear, or you have doubts about
   it for any reason, do not use it.
8. Keep accurate home treatment records.
9. Keep your skills up to date with reviews at the
   HTC.
10. Remember! When in doubt, infuse.

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acknowledgements
The CHS would like to acknowledge those people
who contributed to the development of Home care
The road to independence. Claudine Amesse, RN CHU
Sainte-Justine, Montreal, QC Dorine Belliveau,
RN Horizon Health Network, Moncton, NB Heather
Carlson Member, Hemophilia Ontario, Toronto,
ON Clare Cecchini National Program Manager,
Canadian Hemophilia Society (retired) Christine
Keilback Executive Director, CHS Manitoba
Chapter, Winnipeg, MB David Page National
Executive Director, Canadian Hemophilia
Society Nora Schwetz, RN Nurse Coordinator,
Health Sciences Centre, Winnipeg, MB
(retired) Peter Wilson Member, CHS National
Program Committee, Halifax, NS
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Bon Voyage! Travelling with a bleeding
disorder Charting your course Destination
fitness Navigating the emergency
department Roadmap for managing pain