Informal Caregiver Training and Support
To be competent caregivers, family and friends expect and need:
- Information
- Practical help
- Emotional support
- Meaningful participation in decision-making and treatment planning
Although frequently forgotten, most illness is, in fact, experienced at home.
Patients themselves and caregivers are responsible for much of the care required by the
patient. When healthcare providers prepare the patient and family for their caregiving
roles and support them, not only will care be better, but informal caregivers will feel
much more confident and rewarded in their roles.
Nevertheless, caregiver financial burden, the availability of
alternate
settings, such as long term care, and respite relief remain concerns.
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CAPCManual Attribution:
von Gunten CF,
Ferris FD,
Portenoy RK,
Glajchen M, eds.
CAPCManual: How to Establish A Palliative Care Program.
New York, NY: Center to Advance Palliative Care, 2001.
©
Center for Palliative Studies, San Diego Hospice & Palliative Care, San Diego, CA
and
The Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY, 2001
Permission to reproduce for non-commercial educational purposes with display of
attribution and
copyright is granted.
Last updated: February 20, 2002
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Rationale
Select section:
Changing Illness Experience
Changing Expectations and Needs
Progressive Healthcare Response
Responding to the Opportunity
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Changing Illness Experience
Illness in the Past
Progress Fighting Disaese
Illness Today
Prolonged Illness Experience
Chronic Disease Process
Determining Prognosis
Cancer
Manifestations
Predicament
Prolonged End-of-life Experience
Sudden Unexpected Death
Predictable Decline
Slow Decline, Multiple Acute Crises
Death in the US
Leading Causes of Death
Setting of Death
Desired
Reality
Multiple Issues Cause Suffering
The Square of Care
Morbidity
Pain
Need for Assistance
Social, Financial Impact
Implications for Care
Variable Need for Care
Opportunities
For Patients
For Families
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Changing Expectations and Needs
Increased Consumer Autonomy
Picker Institute 8 Dimensions of Care
Goals, Not Problems, Drive Care
Shift to Goal-oriented Care
Expect Competence, Expertise
Expect Comprehensive Assessment
Expect Effective Communication
Expect Participation in Decision-making
Expect Timely, Continous, Coordinated Care Delivery
Expect Assistance with Caregiving
Caregiver Training, Support
Caregiver Financial Support
Alternate Settings of Care
Respite Relief
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Progressive Healthcare Response
Focus on Disease-modifying Therapy
Focus on Care of the Dying
Early Hospice
Modern Hospice Movement
Dame Cicely Saunders
Origins of "Palliative Care”
Evolution of Hospice, Palliative Care
In United Kingdom
In Canada
In United States
Convergent Evolution
Hospice, Palliative Care in US Today
Hospice Growth
Continued Unmet Opportunity
A Public Health Issue
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Responding to the Opportunity
Paradigm Shift in Thinking
Provide Concurrent Care
Consider Application to Those at Risk
Expand Services, Settings of Care
1º, 2º, 3º Model of Delivery
Expand Access to Expertise
Create Specialized Environments
Many Names, Same Focus of Care
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