The Family Illness Trajectory

INTRODUCTION

The natural history of an illness episode or the normal course of the

psychosocial aspects of sickness for the patient and family
Knowledge of trajectory allows the physician to predict, anticipate , and
deal with a familys response to illness
Knowledge of trajectory allows the physician to predict, anticipate , and
deal with a familys response to illness

STAGE I: ONSET OF ILLNESS TO DIAGNOSIS

The stage experienced prior to contact with medical care

providers. Medical beliefs and previous experiences provide influence
to meaning of illness
Nature of onset may play an important role on impact of illness on
a family
Nature of
Nature of
Characteristic
Impact on

Illness

Onset

Acute/Rapi
d
illness/acci
dent

Rapid, clear
onset

Chronic
especially
debilitating

Gradual onset

of Experience

Provide little
time for
physical
and
psychologi
cal
adjustment

Short period
between
onset,
diagnosis
and
managemen
t thereby
leaving
little time
to remain
in state of
uncertainty

Suffer from
state of
uncertainty
over
meaning
and
symptom

Family

Caught up in
suddenness

Deal with
immediate
decision

Often with
little support
from within
and outside
the family
unit

If less
threatening,
may be
dramatic but
less crisis
oriented
problem for
the family

Vague
apprehensio
n and
anxiety

Fearful
fantasies
over denial
of
seriousnes
s of
symptoms
and
possible
implication

Responsibility of the physician

Explore routinely the explanatory model and fear that patients bring
to the clinical set-up
Explore several aspects of pre-diagnostic phase of patient and
families

STAGE II: REACTION TO DIAGNOSIS: IMPACT PHASE

The physician who presents the diagnosis is responsible for making a

clinical judgment about the amount of information the patient can
absorb.
2 plane or areas by which family and patient react and adjust:
Emotional Plane
Cognitive Plane
During onset of illness,
PHASE I- initially there is tension and
initially there is denial,
confusion with probable lack of
disbelief and anxiety:
capacity for problem solving: threat
protest diffuse directly
sets in motion tension reduction
over unfairness
mechanism
(minutes to hours)
This is followed by
PHASE II- repeated failure in deriving
emotional upheaval
the diagnosis may lead to
characterized by strong
exacerbation of tension and
emotions such as
increase distress
*resort to prayers
anxiety, anger and
*still earn capacity to problem solve
depression: depends on
disrupted roles and
channels (period of
weeks)
The last phase is
accommodation during
which the patient and
the family learn to
accommodate and accept
the diagnosis: this is
very important for the
implementation of
therapeutic plans

PHASE III- increasing assessment

and receptivity of family to new
approach for relief of distress
*some go doctor shopping
*some are willing and capable for
active participation
*time for real opportunity for the
physician and other health workers to
assist family in realigning roles and
expectations, learn new skills and
make adjustment
*willing to accept responsibility
PHASE IV- eventual acceptance of
diagnosis will enable them to mobilize
resources and recognize the family
*quality of family reorganization
*if there is no movement towards this
phase, family will be inefficient in
achieving healthy adaptation to the
crisis and reorganize at more
dysfunctional level

Responsibilities of the physician:

Anticipate number of problems and help families to cope and adapt
more through family conference, discussion with parents, etc.
Specifically:
o Encourage to elucidate clearly to each other the nature of the
Illness: Maintains oppenness, Allows sharing and support
o Non-sharing and silence: Limit openness and spontaneity,
Isolation and Abandonment
The physician should know that feeling of guilt is a natural response
to stress of grief and loss
Assess the likely effect of the illness on the family, predict problems
likely to arise; develop plans for realistically coping with them; and
assess the family capabilities to deal with such stress
The physician should briefly help the family understand some of the
problems as well as benefits to be expected from family and friends
who offer support
Offer alternative interpretation of proposed therapeutic-bolster
familys denial and inability to accept reality

STAGE III: MAJOR THERAPEUTIC EFFORTS

The physician should deal with multiple variables, works in harmony of

the wishes of the patient and family and coordinates all aspects of
therapy which involve specialist and others
Critical issues in choosing therapeutic plan:
Psychological state and preparedness of the patient and family:
belief system and trust, not emotionally equipped
Assumption of responsibility for care very early in the treatment plan
Economy of therapeutic plan
Lifestyle and cultural characteristics of a family are important in
choosing a therapeutic plan
Effects of hospitalization, surgery and other major therapeutic
method are emotionally stressful for the patients family
Responsibilities of the physician:
Remain open to the family, indicate that they will not be abandoned,
provide them information
Deal with multiple variables; consider all factors in planning, then
work in harmony with patient and family
Coordinate all aspects of therapy
Anticipate pathologic response

STAGE IV: EATLY ADJUSMENT TO OUTCOMES-RECOVERY

Experience of recovery or adjustment to the illness outcome is an

important phase for patients and families. It varies according to the type
of outcome anticipated:
Simplest outcome: return to full health
Partial recovery followed by a period of waiting to learn if disease will
return or fear of death because of long period of waiting
Recovery is quite different if it requires acceptance of a known
permanent disability
Responsibilities of the physician:
Deal with immediate effects of trauma
Alleviate anxiety and assure adequate rest
Psychological support can be given through understanding and
repeated reassurance
Explore level of understanding of patient and family.

STAGE V: ADJUSTMENT TO THE PERMANENCY OF THE OUTCOME

This point to the familys adjustment to crisis

The second crisis occurs as family realizes that they must accept and
adjust to a permanent disability. The whole family must begin and give
hope for the patients full return to health.
The family physician should be aware that the continued unwillingness
to incorporate that reality of the permanency of the loss may be sign of
pathology
For acute illness: There is potential for crisis especially when family
routines are suspended. Emotions are high and can lead to anger
especially if the family perceives that the care given by the doctor is not
satisfactory. Because of suddenness of illness, family may find it difficult
to face the stress
What the family physician can do is to facilitate healthy response or
Acceptance of diagnosis and recognize danger signals such as delayed
or prolonged reaction
For chronic Illness: Because of prolonged fear and anxiety there is
higher incidence of illness in other members of the family. If the chronic

burden brings about additional burden and sometimes feeling of guilt

especially if the sick member was previously neglected then as a result
of this feeling the family becomes over-indulgent toward the sick and
this will later result into feeling of overwork. Thus anger and resentment
toward sick member sets in leading back to feeling of guilt later
What the physician can do is to encourage ventilation of feelings, give
reassurance and reinforcement for care
For Terminal Illness: This is highly emotional and potentially
devastating. The moment of diagnosis of a major debilitating or terminal
disease is often remembered by patient in their families as the single
most difficult time of the entire illness experience. A reaction to
shattering diagnosis, the patient and his family anticipate grief reaction.
If the family is functional, members will be drawn close together to
provide care and support to the patient and to each other. If the family is
dysfunctional, it can be the seed for future family discord and
breakdown
The physician can:
1. Assist the patient and the family in relating to health care system.
2. Aid the patient and the family in efficient and functional
readjustment.
3. Provide quality care. Home care is the best and most accepted and
the least demanding, thus it should be facilitated.
Family Reaction to Death
In after prolonged severe illness and adaptation and reaction are already
accomplished. Death comes swiftly and MD to assist family to cope:
Stage of denial: few days to few weeks. If prolonged- premorbid
pattern of abnormal behavior
Anger
Depression
Bargaining
Acceptance