Learning Outcomes

• Menjelaskan konsep dan frameworks family

caregiver

• Menjelaskan keunggulan dan hambatan

dalam family caregiver

• Menjelaskan perspektif kekuatan yang

dimiliki keluarga

www.themegallery.com
 • ‘Families of people are called upon to cope with daily
caregiving, alterations to their roles, and changing
responsibilities within the family.
• These demand require changes in arrangements for physical
care and practical difficulties with daily living while families
are attempting to handle their own emotional distress about
the person’s care and concerns about the future

www.themegallery.com
 • According to the World Health Organization (1990) the
family is the unit of palliative care.
• Family care must begin at the time of diagnosis and
treatment
• Families who do not receive adequate information and
support in the early phases of the person’s treatment
have more needs and less confidence in the health-care
system, and cope less well than families who have been
supported throughout the illness
www.themegallery.com
 Definition
• Families are comprised of individuals who might or might
not be related through blood or legal ties.
• A family might be a married couple, or might be made up of
a large network or relatives, close friends, and neighbours.
• In clinical practice, the most useful approach to defining
and working with the family is to allow the person and his or
her family members to define ‘the family’themselves (PCA
2000).

www.themegallery.com
 Nurses must remain accommodating
and inclusive in their approach to
identifying family members who
require care and support.

www.themegallery.com
 Needs of family members
Four types of family care needs are especially important:

reassurance
regarding patient
comfort family information
needs

family practical
care needs
family emotional
support
www.themegallery.com
Reassurance regarding patient comfort

• The greatest concern for families is to know that the patient

is comfortable and not suffering
• The patient’s pain has an intense effect on the family who
can interpret it as a sign of progressive illness and
impending death.
• Family members can also experience apprehension when
the patient is experiencing other distressing symptoms—
such as dyspnoea, fatigue, nausea, or anxiety.

www.themegallery.com
 When the family witnesses a peaceful and
comfortable death they report more
satisfaction with care, and can reflect on the
end stages of the patient’s life without undue
distress

www.themegallery.com
 Family information needs
• Family members need to receive information about illness
and about how to care for the person.
• Families require information about how best to provide
comfort, how to talk with other family members about the
patient’s illness, how to manage treatment and medication
side-effects, how to anticipate changes in the patient’s
condition, and how to communicate with the patient and
within the family (Ferrell et al. 1995; Scott, Whyler & Grant
2001)
www.themegallery.com
 Family information needs
• The information should be simple to understand, and
specific to their needs at the time.
• Practical advice and focused information provided by
nurses is particularly useful in managing the day-to-day
challenges of providing palliative care at home

Nurse must guidance for family caregivers

www.themegallery.com
 Family practical care needs
• Families feel the burden of providing ongoing care, and need
practical assistance
• Families in rural areas and families with elderly caregivers are
especially at risk.
• The involvement of family members as caregiver must therefore
take into account the finite resources of these people—which they
might be stretching beyond their usual limits because of a sense
of duty to care for the patient.
• This can produce caregiver fatigue, isolation, and ‘burnout’

www.themegallery.com
 The role of family caregiver can also impose financial
burdens. With a shift in care towards home-based
community care, dying people are being cared for more
often at home. Caregivers often have to take time off
work to care for terminally ill people at home. The cost of
family labour and family out-of-pocket expenditures can
be significant, and might be an additional source of
family stress (Kristjanson & White 2002)

www.themegallery.com
 Family emotional support
• The ability of families to provide support to the patient and
to manage home care depend to a large extent on the
amount and quality of support they receive.
• The ability of families to provide support to the patient and
to manage home care depend to a large extent on the
amount and quality of support they receive
These needs include support in
coping with loss, uncertainty about the illness, impending death,
communication within the family, and their own psychological distres
www.themegallery.com
 Family emotional support
• One of the most difficult experiences for family members
to cope with is deterioration in the patient’s mental status.
Confusion, agitation, or personality changes can trigger
feelings of loss in family members, and can create anxiety
about the patient’s safety.
• The family might feel that the person whom they knew
has been lost, and can experience feelings of grief, anger,
and despair.

www.themegallery.com
 Nurses should be alert to difficulties and should
help family members to talk through how they are
going to share information and discuss concerns.
They might need to be assisted in ways of
avoiding conflict and communication mistakes.

www.themegallery.com
 Appropriate and useful interventions
Nurses are well placed to take a role in planning, implementing, and
evaluating strategies to support families. Interventions most helpful to
families can be grouped into four categories:

Patient comfort family emotional

support

family information family practical

assistance

www.themegallery.com
ANY QUESTIONS?