FAMILIES, HEALTH, AND
ILLNESS
Chapter 13
Handbook of
Health Social
Work, 2 nd
Edition
Created by
Teri Browne
FAMILY SYSTEMS-ILLNESS MODEL
Evidence has proven the usefulness of family centered interventions with chronic health
conditions.
Serious illness impacts family dynamics in
relation to illness behavior, adherence, and
disease course.
Most illness management takes place within
the context of the family environment.
Addresses 3 dimensions: psychosocial types
of health conditions, major developmental
phases in their natural history, key family
system variables (see Figure 13.1 p. 320)
EFFECTIVE PSYCHOSOCIAL MODEL
 Needs to encompass all people ef fected by a condition in
order to assess the impact of the illness on family
 Need to redefine the unit of care to include the family or
caregiver (dif fering from the medical model’s focus on the
individual)
 Allows social workers to consider family resources/strengths
along with the demands of the condition over time
NORMATIVE CONTEXT
Families need a four part foundation to create a normative
context for their illness experience.
What do you think is beneficial about “normalizing” the
illness for families?


1.
2.
3.
4.
They need a time frame for disease related to how conditions
unfold over time.
Families need to understand themselves as a systemic functional
unit.
They need an appreciation of individual and family life -cycle
patterns and changes to facilitate their incorporation of changing
developmental demands for the family unit and individual
members in relation to the demands of a chronic disorder.
Families need to understand the cultural, ethnic, spiritual, and
gender-based beliefs that guide the type of care giving system
they construct.
PSYCHOSOCIAL T YPES OF ILLNESS
 Alternate classification scheme from the purely
biological criteria used in the medical settings
 Links biological and psychosocial worlds
therefore clarifying the relationship between
illness and family
 There are several different categories and phases
within the timeline of an illness. Models and
treatment need to be adjusted depending on
where the family is at within this framework.
 Does anyone know what some of those may be?
ILLNESS CLASSIFICATION MEASURES
Onset – can be either an acute (sudden) onset or a
gradual onset
Course – progressive, constant, relapsing/episodic
Outcome – “The extent to which a chronic illness leads
to death or shortens a person’s life span has a
profound psychosocial impact.” (p. 321) Illnesses
range from life threatening to minimal effects
Incapacitation – disability (impairment of cognition,
sensation, movement, stamina, disfigurement, and
social stigmas) caused by illness. The extent, kind,
and timing of disability imply sharp differences in
the degree of family stress.
Predictability - degree of certainty about the specific
way in which an illness will unfold strongly effects
family stress
TIME PHASES OF ILLNESS
Important to look at an illness not as a “static
state”
Crisis Phase – includes any symptomatic
period before diagnosis through the initial
readjustment period after a diagnosis and
initial treatment.
Tasks within this phase include: learning
to cope, adapting to health care
settings/treatment procedures, establishing
and maintaining workable relationships with
the health care team.
How do these tasks differ when the illness is
more or less life threatening?
TIME PHASES OF ILLNESS CONT.
 Chronic Phase – can be long or short, time span between
initial diagnosis and the third phase (when issues of terminal
illness arise). Can be marked by constancy, progression, or
episodic change.
What interventions could a social worker do in this phase that
would be beneficial?
 Terminal Phase – “The inevitability of death becomes
apparent and dominates family life.” Issues that need to be
coped with include separation, death, mourning, and
reorganization.
 Transitions between Phases - transitions present opportunities
for families to reevaluate the appropriateness of their
previous life structures
 How do you think technology has ef fected this timeline? What
other issues do you think have arisen because of medical
advances that may have implications for this model?
CLINICAL & RESEARCH IMPLICATIONS
Interaction between time phases and typology
of illness provides a framework for a
normative psychosocial developmental model
for chronic disease (resembling models of
human development).
Framework can facilitate research aimed to
sort out the relative importance of different
psychosocial variables a crossed different
diagnoses.
Model is guided by awareness of the
components of family functioning
PSYCHOEDUCATIONAL FAMILY
GROUPS
Allows social workers to work with families to
create a psychosocial map
Preventative family psychoeducational and
support groups have increased
Can be provided over one day or as timelimited (i.e. weekly for 3-6 weeks).
Allows families to digest manageable portions
of a long term coping process
Modules can be tailored to specific types and
phases of an illness
Emphasis on resilience perspective
FAMILY ASSESSMENT
 Time and belief systems af fect family dynamics and how an
illness is dealt with
 Constructing a genogram – collecting historical family
information (especially regarding illnesses) helps clinicians
gain an understanding of a family’s organizational shifts and
coping strategies as a system in response to past stressors
(illnesses). Multigenerational assessment helps to clarify
areas of strengths and vulnerability.
 Families may have critical dif ferences in its styles and
successes in adapting to dif ferent types of diseases. (see
case example p. 328)
 As a social worker how do you think you can benefit and
improve your treatment of the family by gathering this type of
information?
INTERFACE OF THE ILLNESS, INDIVIDUAL,
AND FAMILY DEVELOPMENT
Illness disrupts normative changes as family
resources are directed toward illness
management and treatment.
Understanding how illness, individual and
family all evolve is essential to understanding
chronic disease in a developmental context.
From what you already know about systems
theory why/how do you think this important?
INDIVIDUAL AND FAMILY
DEVELOPMENT
 A chronic disorder influences the development of the af fected
person and various family member s
 Factors to consider: age of onset of illness, core commitments in
the af fected per son, each family member’s individual life at that
time, and phase of the family life cycle.
 Life cycle – a basic sequence and unfolding of the life course within
which individual, family, or illness uniquely occur s
 Need for family cohesion varies enormously with dif ferent illness
types and phases.
 With major health conditions, previous norms concerning family
organization may need greater flexibility.
 Social workers can help families set up culturally appropriate
structures that do not overburden any one family member
 Adopting a longitudinal developmental per spective a clinician will
stay attuned to future developmental transitions.
 Time of chronic illness in the life cycle can be normative or non normative How does this ef fect how a family deals with an illness?
HEALTH/ILLNESS BELIEF SYSTEM
 A primary developmental challenge for families is to
create meaning for the illness experience
 Creating an empowering narrative can be an
important task because illness is often viewed as a
betrayal of one’s body
 Family health beliefs – helps family cope with and
accept the illness. Serves as a “cognitive map” for
making health care decisions.
 Finding this information out is a powerful bridge for
health professionals and families to work together.
 It is important to find these beliefs out in the crisis
phase and compare the beliefs of individuals to
subsystems within the family and the health care
system or wider community
BELIEFS ABOUT NORMALIT Y
 Adaptation to chronic disorders is closely linked to
what families belief is normal or abnormal and the
importance of conformity and excellence.
 What implications in dealing with illness are there
for a family that sees help seeking behavior as
weak?
 Examples of how to extract that information from
families:
 “How do you think other average families would deal
with a similar situation to yours?”
 “How would a health family ideally cope with your
situation?” (p.332)
 Flexible beliefs about what is normal and healthy is
needed to sustain hope
MIND-BODY RELATIONSHIPS
Conceptualization of this relationship is highly
debated
Medically mind-body relationships emphasize
character traits or emotional states that
affect the body negatively (positive influences
are often overlooked)
Recently the concept of mind-body unity has
gained notoriety
It will be important as social workers to find
out a families beliefs on this relationship…
Why do you think this is important information?
FAMILY’S SENSE OF MASTERY
FACING ILLNESS
 Important to find out how a family defines mastery or control
in general and in situations of illness.. Internal control or
external control? External control by chance or by powerful
others?
 What implications for treatment are there for each of the
those dif ferent belief schemas?
 These beliefs ef fect each family member’s relationship with
the illness and health care system
 Families may adhere to a dif ferent set of beliefs about control
when dealing with physical illness as opposed to daily
stressors.
 Beliefs about control can change depending on the time of
the phase of the condition
*Social workers must be cautious about judging the relative
denial or acceptance of painful realities of chronic illnesses.
Denial versus healthy minimization and use of humor need to
be recognized.
FAMILY BELIEFS ABOUT THE
CAUSE OF AN ILLNESS
 Common for people to create an explanation that
helps organize and explain their illness
 Family’s beliefs about the cause of an illness should
be assessed separately from its beliefs about what
can affect the outcome.
Why do you think that distinction is significant?
 Adaptive families respect the limits of scientific
knowledge, affirm basic competency, and promote
flexible use of multiple biological and psychosocial
healing strategies
 Blame, shame, or guilt make it difficult for a family
to cope and adapt to the illness
BELIEF SYSTEM ADAPTABILIT Y
 Families and health care providers need to dif ferentiate their
beliefs about their overall participation in the long term
disease process, ability to control the biological process of
the illness, and the flexibility that they can apply those
beliefs.
 Experiences of competency and mastery for a family relies on
their grasp of these distinctions.
 Families with flexible belief systems are more likely to
experience death with a sense of equanimity rather than
profound failure.
 Flexibility also needs to be present in the health professional
systems in order to facilitate appropriate family functioning
 It may be helpful for families to view control in a more holistic
sense i.e. in regards to their participation in the overall
process as a measure of success versus survival or recovery.
ETHNIC, SPIRITUAL, AND
CULTURAL BELIEFS
These factors strongly influence family beliefs
concerning health and illness
Health professionals need to be culturally
competent in working with families who have
differing beliefs from their own. This will be
important when trying to collaborate with a
family for long term care.
Some areas that cultural norms vary:
appropriate “sick role” for the patient, kind
and degree of open communication about the
illness, who is apart of the caregiving system,
who is the primary care taker, etc.
FIT AMONG HEALTH-CARE PROVIDER,
HEALTH SYSTEM, AND FAMILY BELIEFS
 Common misconception to regard the family as one unit that
feels, thinks, believes, and behaves the same ways.
 Social workers need to gather information regarding the level
of agreement and tolerance for these dif ferences among
family members and among the health care system.
 Families that balance the need for consensus with allowing
diversity functions optimally.
 It is common for dif ferences in beliefs to rise up during any
major life cycle
 The blurred lines between the chronic phase and the terminal
phase illuminates the potential risk for professionals’ beliefs
to collide with those of the family.
Why do you think that is? What are some examples of how this
may happen? How would you combat this if you were a social
worker?
CHALLENGES IN IMPLEMENTATION OF
FAMILY-BASED RESEARCH
 There is a need to further develop research methods
and protocols that demonstrate the relationship of
family system dynamics to health status, health care
outcomes, and cost containment.
 It is difficult to implement research in health care
settings (i.e. hospitals) that focus primarily on the
treatment of the individual with the disease.
 Improving family functioning may not be a
substantiated goal for medical settings or insurance
corporation