Transcript types of home care

Home care: The road to independence
Part 1
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PURPOSE
H OME CARE : T HE 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 journey—the members of the
comprehensive care team at the hemophilia
treatment centre (HTC).
OVERVIEW
1. BENEFITS
2. TYPES
and RISKS of home care
of home care
3. STARTING
on a home care program
4. ASSESSING BLEEDS
5. TREATING BLEEDS
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;
BENEFITS …
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.
BENEFITS
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.
RISKS …
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.
RISKS
TYPES OF HOME CARE
THERE ARE TWO APPROACHES TO HOME INFUSION :

O n - de man d th e r ap y - 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.
on-demand

Pr o p h yla xis th e r a py - 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.
TYPES …
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.
TYPES …
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.
DE S MO P RE SS IN | A G UI DE F O R P A T I E NT S A ND T HE I R C A RE G I V E RS
CY K L O K A P RO N | A G UI DE F O R P A T I E NT S A ND T HE I R C A RE G I V E RS
available online at www.hem oph i l ia.c a /en/e duc at io na l -m ater i a l/p r inted -doc um ents / re le va nt - to-a l l -b le ed ing -d isor ders
TYPES
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 child’s 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.
STARTING PROGRAM …
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.
STARTING PROGRAM
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 lifethreatening … 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.
ASSESSING BLEEDS
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.
TREATING BLEEDS
ACKNOWLEDGEMENTS
The CHS would like to acknowledge those people who contributed to the
development of Home care: The road to independence.
C L A U D I N E A M E S S E , RN
CHU Sainte-Justine, Montreal, QC
D ORINE B ELLIVEAU, R N
Horizon Health Network, Moncton, NB
H E AT H E R C A R L S O N
Member, Hemophilia Ontario, Toronto, ON
C L AR E C E C C H I N I
National Program Manager, Canadian Hemophilia Society (retired)
C HRISTINE K EILBACK
Executive Director, CHS Manitoba Chapter, Winnipeg, MB
D AV I D P A G E
National Executive Director, Canadian Hemophilia Society
N ORA S CHWETZ, R N
Nurse Coordinator, Health Sciences Centre, Winnipeg, MB (retired)
P ETER W ILSON
Member, CHS National Program Committee, Halifax, NS
Home care: The road to independence
Bon Voyage! Travelling with a bleeding disorder
Charting your course
Destination fitness
Navigating the emergency department
Roadmap for managing pain
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