FAMILY INVOLVEMENT IN CARE
CLINICAL PRACTICE GUIDELINES
Hemophilia and von Willebrand's disease: 2. Management
(Edition 2, Update 2 [1999-07-07])
Involvement of the family
These lifelong, life-threatening and costly diseases have a significant
impact on many aspects of family life. Parents, spouses and other
family members are active participants in the patient's care. The
diagnosis can produce tremendous anxiety in parents about their
children's future and their risks of everyday living. Adolescents
who feel their need for independence is in conflict with the need
to conform to a care regimen may suffer both anxiety and rebellion.
Patients and their families are also anxious about the risks of
viral transmission through the blood products they need. Some of
this anxiety can be alleviated through proper education of the
patient and family about the disease and its management.
Given the hereditary nature of these bleeding disorders, family
members will be concerned about their carrier status and the
risk to future children. These concerns can be addressed through
genetic
counselling for the extended family and, when appropriate, through
carrier testing and antenatal diagnosis.<17> The emotional
and psychologic stress of living with a severe bleeding disorder
or of caring for someone with such a disorder may necessitate psychologic
counselling. As a result of HIV, hepatitis C and hepatitis B infections,
counselling needs for families have increased drastically.<18> Practice
of universal blood precautions reduces the risk of viral transmission
to family members. Sexual partners of those infected with HIV and
HBV through contaminated blood products are at risk of acquiring
HIV or HBV. Present knowledge suggests the concern is less for
sexual partners of those infected with HCV.<19>. As for all
patients with HIV and HBV infections and their partners, education
about safer sexual and other practices to reduce infection transmission
must be provided.<20> Susceptible family members of those
infected with hepatitis B must be protected by hepatitis B vaccination.
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OTHER VON WILLEBRAND SEARCHES
BLEEDING DISORDERS IN WOMEN
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FAMILY INVOLVEMENT IN CARE
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