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FAMILY in ILLNESS and CRISIS

Transcript for ASMPH YL6 Public Health Sub-Module on Family Medicine
By:
Ma. Rosario CHERRY Bernardo-Lazaro, MD, MBAH, FPAFP

A major preventive responsibility of a doctor is to help individuals and families handle stressful life
events. Some stress is normal and essential for life and growth. It provides the stimulus to adapt to the changing
of life. Too much stress, however, prevents people from seeing what they can become. A stressful life event like
disease or illness in a family member, which occurs in a family in functional equilibrium, puts the family in
disequilibrium. If the resources are inadequate, crisis ensues. Thus, as physicians who deal with patients with
illness, it is important for us to be aware that illness (whether severe or not) may be a cause of stress and crisis to
can families who are our allies in caring for our patients.

OUTLINE: This transcript aims to provide discussion on the following:

I. Crisis and Family in Crisis
a. Definition
b. Phases
c. Precipitating incidents
II. Illness as Crisis Trigger
a. Definition of Illness versus Disease
b. Illness Typology
c. Individual Illness Timeline
d. Family Illness Trajectory
III. Dealing with families in illness and crisis
a. Impact of illness on the family
b. Factors influencing families ability to cope with illness
c. Assessing familys ability to cope
d. Application of Family Assessment Tools

I. CRISIS and FAMILY in CRISIS

DEFINITION. In an individual, crisis occurs when one is confronted with a critical incident or stressful
event that is perceived as overwhelming despite the use of traditional problem-solving and coping strategies. In
families, crisis occurs when families encounter a transition they cannot handle with the coping skills and
problem-solving method they have always used. Thus, crisis in a family is an upset in a steady state (or
homeostasis) causing a disruption or breakdown in a familys usual pattern of functioning.

PHASES OF CRISIS. A state of crisis in a family is usually short-lived, usually lasting no longer than six-
weeks and is usually characterized by four phases, which may occur in order, overlap, and/or intertwine.
Awareness of the phases, as well as awareness of a familys responses to each phase, allows one to examine a
crisis. The phases of crisis which a family generally experiences include:

Phase 1: Triggering of Crisis. Any stressful event perceived as overwhelming by the patient or family may
trigger a crisis reaction consisting of psychological and physiological symptoms. When the crisis is triggered, it
causes psychological and physiological symptoms as well as changes in family circumstances. Family members
may see the crisis as a threat to the familys goals, security and emotional ties. While all crises are challenging,
some crises are universally threatening such as death of close family or friends, serious illness and personal
injury, or environmental disasters.

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Phase 2: Mounting Tension and Disorganization. The crisis may spur a rush of memories about traumatic or
highly stressful times in the familys past. Family members experience increasing feelings or vulnerability,
helplessness, anxiety and confusion. At this phase, families may feel mounting tension as they attempt to cope
with change using strategies that are familiar to them but unfortunately, not effective. The family becomes
increasingly disorganized as strategies and resources used before to solve family problems fail. Negative
emotions such as anxiety and depression become prominent and rational thinking may be blocked. At this point,
family members may feel helpless, hopeless and in need of support. It is at this point of maximum tension that
the family may be susceptible to good or poor advice. Thus, this is also a critical point for reorganization or in
determining how to resolve the crisis.

Phase 3: Mobilization of Resources & Reorganization. In an attempt to deal with the mounting tension and
disorganization, the family begins to involve friends, relatives, neighbors and others in the crisis. Thus, internal
and external resources are mobilized and emergency methods or creative or novel solutions may be attempted,
resulting in a range of possible outcomes.

Phase 4: Resolution or Maladaptation. Although crisis could eventually lead to a range of possible outcomes,
two possible outcomes include resolution and maladaptation. When support for dealing with the crisis is
available, the crisis may be resolved or lead to the restoration of steady state or adaptation to new circumstances
with new coping skills in place. This is called resolution. However, when the family is unable to find
appropriate solutions to the crisis, a chain of events is set off, creating yet another crisis for the family. This
refers to maladaptation, a situation when there is only superficial closure or no resolution of the issues that led
to the crises. A maladaptive family either goes to terminal disequilibrium in which interaction is impaired due to
some unresolved crisis. This outcome phase can be dependent on the familys perception of the stressful event
or critical incident, response to the stage of tension, coping defenses and support available.

PRECIPITATING INCIDENTS. Any stressful event perceived as overwhelming by the patient or family
may trigger a crisis. Often it is not the stressful event itself that causes the crisis. Rather, it is the appraisal of the
event as serious, uncontrollable, and beyond the patients and families resources for coping that triggers a crisis
response. Examples of critical incidents or stressful events that may precipitate a crisis are the following:

Table 1. Critical Incidents or Stress Events and Examples

Types of
Critical Incidents/ Description Examples
Stressful Events
Developmental Life-transition events Birth of child, graduation from college, midlife career
change, retirement

Existential Inner conflicts and anxieties related
to purpose, responsibility,
independence, freedom or
commitment
Environmental Natural or man-made disasters
Realization that one will never make a significant impact on
ones profession, remorse that one has never married or had
children, despair that ones life has been meaningless
Tornado, earthquake, floods, hurricanes, forest or grass fires

Medical A newly diagnosed medical Multiple sclerosis, human immunodeficiency virus infection,
condition or an exacerbation of a infertility, myocardial infarction, cancer, medical problems
current medical problem that result in partial or total disability

Psychiatric Actual syndromes and those that Depression or suicidal thoughts, events precipitating acute or
affect coping post-traumatic stress disorder

Situational Uncommon, situation-specific Loss of job, vehicular accident, divorce, rape

events

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II. ILLNESS AS CRISIS TRIGGER

As stated above, medical condition is one of the critical incidents or stressful events that may precipitate
crisis. Medical conditions are usually related to diseases or illnesses. Before discussing the typology, timeline
and trajectory of illness, it would be worth reviewing the difference between disease and illness.

A. DISEASE versus ILLNESS

Disease is a theoretical construct, or abstraction by which physicians attempt to explain patients problems
in terms of abnormalities of structure and/or function of body organs and systems and included both physical
and mental disorders. On the other hand, illness refers to a patients personal experiences of disease or ill-health
(Weston and Brown, 1995; Overview of the Patient Centered Method). It could be surmised that patients come
for consult because of the feelings or experiences brought by the disease (which is illness) rather than merely the
disease itself. Thus, whereas disease refers only to the physiological abnormalities taking place in the patients
body, illness encompasses the persons perceptions, emotions, and experiences of the disease, as well as the
suffering and changes the patient and the family have to undergo in the presence of that disease (Leopando,
1999; Curtin & Lubkin 1998).

Illness creates stress and requires certain degree of adjustment not only on the part of the individual afflicted
but also in the family where he/she is a part of. Part of managing our patients is being able to understand and
support them and their families as they cope with the illness. Knowledge of the illness timeline and typology of
disease as well as its trajectory could help us predict its possible impact on individual patients and family. And
later, could enable us to decide what we can do as physicians.

B. TYPOLOGY OF ILLNESS

Typology of illness is a scheme that defines and classifies illnesses. Knowledge of illness typology is
important in developing interventions not only for patients as individuals but also for their families given to
possible family stressors involved per illness type.

Some literature would simply categorize them according to its nature or whether acute or chronic. Acute
illness is usually characterized as rapid with clear onset. It. On the other hand, chronic illness may be those
which are incapacitating or debilitating and would have gradual onset. In chronic illness, there is prolonged fear
and anxiety from state of uncertainty over meaning and symptom. However, the two categories may sometimes
superimpose given that some chronic illness could also have acute or sudden onset. Thus, typology of illness
further classifies illness (especially chronic illness) into four broad categories. These categories or attributes of
illness are: onset (acute, gradual), course (progressive, constant, episodic), outcome (fatal, non-fatal) and
incapacitation (mild to severe, single to multi-system involvement). (Refer to Table 2)

C. INDIVIDUAL ILLNESS TIMELINE

Rolland (1989) described the natural history of illness within three timeline phases. The three timeline
phases illuminate critical transition points in the natural developmental phases of an illness. The phases are:
crisis, chronic and terminal phases.
The crisis phase is initiated with the first symptom onset and extends through diagnosis. This phase
creates high stress for families who are shocked and angered by the sudden illness and who are
unprepared for the role changes and family adjustments required.
The chronic phase is the time span from initial diagnosis through the treatment and readjustment. The
chronic phase requires prolonged adjustments and the establishment of a level of family normality to
deal with the illness. The life under the abnormal conditions of chronic illness is key task for the family.

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The terminal phase occurs when death becomes apparent and family grieving begins. This phase is
marked by separation, death, grief and resolution of mourning.

Table 2. Typology of Illness and Psychosocial Impact

CHARACTERISTICS/
CATEGORY TYPOLOGY PSYCHOSOCIAL IMPACT
EXAMPLES
Acute Sudden or rapid with clear Provides little time for physical and
onset psychological adjustment and places the entire
e.g. stroke, myocardial family into immediate crisis, with major
infarction readjustments compressed into a very short
period of time.
ONSET Gradual Slow onset Allows families some time for adjustment to
e.g. arthritis, Alzheimers the illness and time for family adaptation.
disease Significant
alteration of roles within the family may be
necessary to compensate for the ill member.

Progressive Continuously Family members are faced with a symptomatic

symptomatic and family member whose condition is steadily
progressive worsening. They are challenged constantly to
e.g. Alzheimers disease adapt roles and reorganize family structures to
care for the ill member.

Constant/ Stabilizes after an initial After the initial period of crisis and
Stable crisis event adjustment, families can stabilize the care for
COURSE e.g. Chronic Stable the chronically ill member.
Angina, Stroke

Episodic Alternates stable periods
of varying length with
times of acute
exacerbation or flare-up
e.g. asthma, ulcerative
colitis
Fatal May cause death, shorten
ones life span or pose an
immediate threat to life
e.g. metastatic cancer,
severe cardiomyopathy
OUTCOME
Non-Fatal Normally, do not threaten
ones life or typically
shorten lifespan
e.g. cataract, tension
headaches
Requires families to change roles back and
forth, depending on the current health status of
the ill member. The uncertainty and frequent
role changes add tremendous stress to the
family unit.
These diseases create an undercurrent of
anticipatory grief and separation and a sense of
impending doom which affect all phase of
family adaptation
Family adaptation must focus on long-term
adjustments and stable, permanent realignment
of roles.

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Severity Incapacitation refers to an The type and severity of incapacitation is very

(Mild-to- impairment of functioning
severe) due to a defect or severe
disability. It can result
from impaired cognition,
Type
INCAPACITATION movement, or energy
(Single level, or physical
/multisystem deformities or other
involved) medical causes of
stigmas.
significant factor in determining the stress
experience by families. For example,
combined physical and cognitive effects of
stroke can stress the family more than the
injury or illness which affects only the
persons energy production while allowing
retention of cognitive faculties.

D. FAMILY ILLNESS TRAJECTORY

The interaction of the illness time phases and the typology, provides a basis for family assessment and
framework to relate disease with psychosocial tasks of the family which would subsequently anticipate different
responsibilities of the attending physician in each stage. This can be better understood through the family illness
trajectory. The Family Illness Trajectory is the normal course of the psychosocial aspects of disease for the
patient and the family. It indicates normal and pathologic responses thus enabling family physicians to formulate
a therapeutic plan. Knowledge of the trajectory allows the physician to predict, anticipate and deal with a
familys response to illness. Table 3 shows the stages of the family illness trajectory and the tasks of the
physician at each stage.

Table 3. Stages of Family Illness Trajectory & Physicians Tasks

STAGE DESCRIPTION PHYSICIANS TASKS
Stage I: This stage covers the period from Although not actively involved at this stage, the physician
Onset of the time the patient demonstrates should be able to elicit the patients explanatory models of
Symptoms/ physical symptoms or feels that illness. With inappropriate label of illness (emotionally critical
Illness there is something wrong to the misperception), acknowledge and explore conflict the patient
time consultation is sought. may be experiencing. Explore several aspects of pre-diagnostic
Health beliefs and previous phase of patients and families.
experience help shape what
patients and families do at this
stage and how soon they seek
consult.

Stage II: This is where initial contact with
Impact phase/ the physician is usually
Reaction to established. Disease and
Diagnosis appropriate treatment can be
described according to the
patients level of comprehension
and understanding. Unnecessary
frightening anxiety may occur if
some information were not
understood.
Oftentimes, bombarding the patient and family with medical
jargons can hinder rather than help treatment. It is essential to
provide them with small doses of information that they need in
order to make decisions.
If the disease is not life-threatening but patient is liable to be
unduly alarmed, elicit explanatory model of illness of the
patient.
If the diagnosis is confusing and stressful, the physician must:
a) provide support, and continuity of care; b) interpret findings
which are misunderstood; c) offer advice and encouragement;
and d) clarify meaning of specialists message and outcome of
illness and operation.

Stage III: This is the period of great
Major mobilization when the family
Therapeutic pursues avenues for treatment and
Efforts palliation. A good support system
and wealth of resources help the
The physicians task at this point is to offer the family options
that are effective at a cost they can afford and are acceptable to
the patient and the familys belief systems. It is also best to
view the family as a therapeutic ally and not merely as a
recipient of care. From this perspective, the physician should
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family go through this stage. explore the patient and his/her familys reaction to the therapy
and how it is proceeding, and make necessary intervention
should they be dissatisfied.

Stage IV: This phase is usually marked by
Recovery phase/ the disappearance of symptoms
Adjustment to for acute, self-limiting illness or
Outcome returning to the home
environment and some degree of
functionality for chronic illness.
Adjustment to outcomes depends
on different factors and
anticipated outcomes of the
disease process.
The physician must be able to prepare the family for the
potential outcomes of a disease so they may learn to deal with
them and prepare a realistic plan. When full recovery without
incapacity is expected, no problems are anticipated. But, when
partial recovery, permanent disability, or even death is
expected, the family experiences some form of crisis.
For chronically ill patients, the physician should also be able to
continually provide support and guidance to the family and
educate the caregiver, and arrange for home care is necessary.

III. DEALING WITH FAMILIES IN ILLNESS AND CRISIS

Given that medical conditions are stressful events that may trigger a crisis, physicians must be able to
understand how illness can affect not only the patient but also his/her family. And as the family is usually the
ally in patient care, the physician should also be able to assess the familys ability to cope with the crisis.

IMPACT OF ILLNESS ON THE FAMILY

Illness disrupts family relationships, social functioning and economic resources. The psycho-emotional
impact of illness may be noticeable among family members who see the suffering of their loved ones especially
among those dealing with chronic and life-threatening illness. Among family members living and caring for
chronically ill patients, there have been noted decreased physical well-being and increased utilization of medical
services of family members for perceived symptoms. On certain occasions, other family members may find that
they have little time to pursue recreational activities given that they need to care for the ailing member.
Furthermore, the financial impact of curing illness is greatly felt with increasing health care cost.

ASSESSING FAMILYS ABILITY TO COPE

Learning about the patients and familys experience of the illness may help the physician ascertain the
familys ability to cope. Together with active listening (which were taught and learned in Year Level 5), the
following questions may be asked:

What is the nature and characteristic of the illness that the family is dealing with?
Knowledge of the illness typology including the onset, course, outcome and degree of incapacitation
(refer to transcript on Illness Typology) will help determine the nature and characteristic of the illness that
the family is dealing with.

What does the illness mean to the patient and to his/her family? What are their fears and uncertainties
regarding the illness?
Different religious and cultural beliefs may influence the meaning of the illness to the patient and
family. Stage in the family life cycle may also affect the fears and uncertainties of the patient and family.

How have they been coping with the illness so far? What has helped or hindered them?
Different families would have different ways to cope with illness in a family member because of
different factors. These factors which may be internal or external to the family which may enable or hinder
the family cope with the disease.
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How did the experience off illness change the patient and his/her family?
Diseases may affect the familys resources and cause disruption of roles of the patient and the family
members and changes in relationships within the family.

FACTORS INFLUENCING FAMILYS ABILITY TO COPE

The ability of the family to cope with illness depends on different factors which may be within
(intrafamilial factors) or outside (extrafamilial factors) the family. Intrafamilial factors include the internal
integrity and resources of the family like degree of family functionality, family life cycle and family resources.
External factors, outside the family, include burden of disease like stigma associated with the disease and
typology of illness. Depending on the description of these factors, they may either enable or hinder the familys
ability to cope with the disease. Table 4 enumerates the different enabling and hindering factors that influence
familys ability to cope.

Table 4. Enabling and Hindering Factors Influencing Familys Ability to Cope

FACTORS ENABLING HINDERING
Degree of family Functional families that are Dysfunctional families
functionality flexible in adapting to changing poor lines of communication
roles have healthy communication poor emotional connectivity
INTRAFAMILIAL FACTORS

lines, provide good emotional

support

Family life cycle Stages wherein family members Stages that are supposed to
are concentrating within the sendoff family members outside
family the system

Family resources Adequate financial resources Limited financial resources

Good social support system Lack of a social support group
Strong spirituality Lack of access to community
Ability to tap community resources
resources

Stigma associated with the Diseases that do not carry social Highly communicable diseases
EXTRAFAMILIAL

disease stigma (e.g. common colds, that carry with it a social stigma
hypertension) isolating patients and families
FACTORS

Typology of Illness Acute and self-limiting Acute and life-threatening

Non-fatal diseases with no Chronic and debilitating
incapacitation Rapidly progressive and terminal
illness

Adopted from Atwood and Weinstein. Family Practice, Family Therapy: A Collaborative Dialogue

APPLICATION of FAMILY ASSESSMENT TOOLS

In practice, the family is rarely interviewed as a unit. The family database is a cumulative record that
must be modified as various member of the family contributes to the account of the family crises, functions, and
resources. Assessing the familys status in crisis may require the following steps and suggested family
assessment tools (discussed in detail in a separate session/ transcript):
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Table 5. Application of Family Assessment Tools in Family in Crisis

FAMILY
STEPS IN ASSESSING DESCRIPTION ASSESSMENT TOOLS
FAMILY IN CRISIS (and others)

Identify the stressful Identify and evaluate precipitating event to understand Patients Medical History
event or crisis trigger its meaning to the patient and his/her family. Family Medical History

Assess Family History of Identify and evaluate preexisting life stresses. Familys Family Lifeline
coping with problem and psychosocial history provides information regarding
stressor capacity of family to cope with illness and other
stressful life events.

Determine Family Family structure can somehow suggest available Family Genogram
Structure and Family Life resources within the family.
Cycle stage Stage at the family life cycle can suggest timeliness of
illness or problem as this can affect familys ability to
cope.

Determine Role of patient Patient as a member of the family may play the role for Family profile and/or
in the family decision-making, financial support (breadwinner) and Stakeholders Analysis
emotional support. Thus, illness in the patient may also
affect the area for which he/she provides support in the
family (financial, emotional).

Monitor for Role Gaps in family roles exist or maybe results of the Family Mapping
Disruption illness. Identifying these gaps may help the family
explore options for filling those gaps from within or
outside the family.

Ascertain Family Resources internal or external to the family can suggest Family SCREEM
Resources available support to help patients resolve their crisis.

REFERENCES

Kavan et al (2006). A Practical Guide to Crisis Management. American Family Physician. American Academy
of Family Physicians. 74(7): 1159-1164.

Newby, N. (1996). Chronic illness and the family life-cycle. Journal of Advanced Nursing. (23) 786-791.

Alba-Concha, M.E. (2014). Dealing with the Family, Impact of Illness on the Family. Textbook of Family
Medicine, Volume 1. C& E Publishing Inc. Pages 71-75.

Leopando. Z. (1999). Impact of Illness. Proceedings of the Orientation Course in Family Medicine. Philippine
Academy of Family Physicians. 26-38

Yu-Maglonzo, E. (2008). The Filipino Physician Today. Second Edition. UST Publishing House.

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