FAMILIES AND CHRONIC ILLNESS

Module Sections:
Families and Chronic Illness
-- Module Objectives
-- Scope of the Issue
Pre-Test
Establishing a Common Ground
-- ABC-X Model
-- Double ABC-X Model
-- ABC-X Model: Hills Original Model
-- Double ABC-X Model: McCubbin & Patterson
-- The Family Systems- Illness Model
-- Rollands Phases of Illness
-- Rollands Model
-- Illness Life Cycle
-- Jolol Family Vignette
Forming a Unified Framework
Using Strategies and Techniques
-- Treatment
-- Ending Therapy
Applying the Framework
-- Vignette Applied to Integrated Model
Post Test
All Pages

Introduction
WELCOME TO THE COURSE
Welcome!
This Family Issues: Families and Chronic Illness module is focused on how
families are affected and cope when families experience a chronic illness or
disability of a family member. Throughout the module we will prompt you to
Journal your thoughts and reflections in your personal Home-Based Family
Therapy (HBFT) journal. (Have you received your journal yet?) This will provide
you with a place to consider and record your strategies for working with chronic
illness-affected families. Other prompts include answering survey questions and
exploring Resources for further study.

The structure of this module will guide your exploration of applicable,

therapeutic issues of working with families that have a member with a chronic
illness through the following:
1. Establishing a common ground of terminology and a lens through which to
view the complexities and unique characteristics of family experiences of
managing a chronic illness
2. Utilizing a unifying framework to organize the complex dynamics involved
in the process of therapy with the families

3. Applying your personal theoretical framework to a family vignette and

working through how unique characteristics of the interface between family
experiences and chronic illness are organized through the blending of two
familiar theoretical models

4. Creating a journal of your personal responses and reflections

Module Objectives
Through this module you will be able to:

Identify the multi-faceted domains of development (individual and family)

surrounding a child battling a chronic illness
Utilize strategies and interventions, congruent with your training and
experiences as a Home-Based Family Therapist (HBFT), to help affected
families maintain healthy relationships
Identify and implement HBFT strategies for working with the family in
collaboration with a medical treatment team.
Help the affected family understand their changing roles through the
course of the family members illness (especially during the first two phases
crises and early chronic)

Scope of the Issue

According to National Invisible Chronic Illness Awareness Week (2007), nearly 1
in 2 Americans or 133 million Americans have a chronic condition. The
description used to define chronic conditions included illnesses such as cancer
or rheumatoid arthritis, to migraines or back pain.

The National Center for Chronic Disease Prevention and Health Promotion
(NCCDPHP, 2005) reports that more than 90 million Americans live with chronic
illnesses, and 70% of all deaths in the United States are a result of chronic
diseases. NCCDPHP (2005) defines a chronic illness as a disease having a
prolonged course of illness and debilitating effects on an individual, such as
cardiovascular disease, cancer, and diabetes (which are the most common
health problems in America). The medical care costs of individuals diagnosed
with a chronic illness account for more than 75% of the nations $1.4 trillion
medical care costs (NCCDPHP, 2005).
In addition to the prevalence of chronic illness and disability, the literature
illustrates that these will touch us all at some point in our lives. For example,
both Rolland and Walsh have done extensive research in the area of chronic
illness and are continually referenced throughout this module. Their
contributions to chronic illness research have made them a continuous resource
in guiding therapists and physicians. The following quote is an excerpt from
Rolland & Walsh (2005). The quotation transitions you, the user, into the entirety
of the module and introduces the present condition of chronic illness in our world
today.

Illness, disability, and death are universal experiences in families. Chronic

and life-threatening conditions confront all of us with some of lifes greatest
challenges. The real question is not if we will face these issues, but when in
our lives, what kinds of condition, how serious, and for how long. With major
advances in medical technology, people are living much longer with formerly
fatal conditions, such as cancer, heart disease, diabetes, and now AIDS.
Many children with chronic conditions that were once fatal or necessitated
institutional care are now living into adulthood. The extension of later life has
heightened the strain on sons and daughters who must contend with divided
loyalties and complex navigation between elder caregiving, childrearing, and
providing financially for the family. Thus, ever-growing numbers of families
are living with chronic disorders over an increasingly long time and are
struggling to cope with multiple challenges. (pp. 285-286)
The above prevalence rates and quotation by Rolland & Walsh (2005) give us a
glimpse into the issues related to chronic illness. The impact of managing
chronic illness present challenges to individuals and their families thus
permeating the very fabric of our society. Chronic illness has a way of rippling
from smaller systems into larger systems (Bronfenbrenner, 1979). The ways in
which chronic illness affects families will be further discussed later in the
module. First, let us address the question: What is chronic illness? This term will
now be briefly introduced and will be discussed in more depth as you progress
through the module.

Pre-Test
Click the link to respond to the following survey:

Families and Chronic Illness Pre-Evaluation.Families and Chronic Illness

Pre-Evaluation.

Establishing a Common Ground

WHAT IS A CHRONIC ILLNESS?
A chronic illness is a long-term or permanent illness that interferes with a
persons ordinary physical, psychological, or social functioning (Gordon, 2002).

Consider the following definitions of each term:

The term illness refers to the subjective experience of the patient. It is the

subjective experience of being sick

the experience of symptoms
suffering
help seeking
side effects of treatment
social stigma
explanations of causes
diagnosis
prognosis
personal consequences in family life and occupation (Kleinman, 1998a).
In contrast, disease refers to the diagnosis of the doctor or folk healer. It is a
clinicians definitions of the patients problem, always taken from the paradigm
of the disease in which the clinician was trained. (Castillo, 1997)

Chronic describes symptoms that last indefinitely and that have a cause that
may or may not be identifiable (Falvo, 2005). A chronic condition requires
individuals to reorganize their entire life to accommodate the outcomes of the
condition (Falvo, 2005).

Throughout this module, users from a variety of disciplines will be assessing and
applying the material presented. The HBFT team recognizes each users unique,
individual experiences from his or her background. The team also acknowledges
each users experiences with chronic illnesses within the family. However, in this
module, we are going to address this particular topic through a systemic lens.
This means that we will look at the family unit as a whole, while also recognizing
each family members individual role within the larger family system. When a
change occurs to one family member this has a ripple effect to other members of
the family. This module will observe how a chronic illness affects the family unit
and the interaction of individual members within that family unit. The models and
theories presented and applied in this module provide a framework for working
directly with family systems affected by chronic illness and other disabilities.

ABC-X Model
Under the umbrella of stress theory falls one of the most influential models of
stress: the ABCX Family Crisis Model (Hill, 1949; 1958; hereafter ABCX Model).
This model goes beyond a focus on the individual, and looks at the ways in
which families adapt to stressful situations (McCubbin & Patterson, 1983). While
collectively focusing on families, the ABCX Model incorporates individual family
members input and contributions to dealing with a stressor. In this regard, Hill
(1949, 1958) was able to take a holistic view, or a systemic view, and see the
forest (i.e., family) as comprised of individual and unique trees (i.e., individual
family members). Without the individual trees, there would be no forest. From a
historical perspective, Hills research was advanced in that it was created during
a time replete with individually focused, intrapsychic theories. What is more, the
ABCX Model has withstood careful assessment since its inception in 1958
(McCubbin & Patterson, 1983; Burr, 1973).

Double ABC-X Model

In 1983, McCubbin & Patterson decided to add to Hills ABCX Model to include
factors they described as post-crisis variables. They created the Double ABCX
Model, which is used to describe the family stress response or Family
Adjustment and Adaptation Response (FAAR). McCubbin & Patterson (1983)
posit that families rarely experience one stressor, or stress event, at a time.
Rather, they assert that families face multiple stressors, which may occur
simultaneously. These multiple stressors pile-up over time, especially after
major life stressors (e.g., death of a family member, losing stable employment,
or diagnosis of a chronic illness). This pile-up of stressors (aA) is labeled the
double A factor in their post-crisis addition to Hills (1949, 1958) ABCX Model.
The familys adaptive resources (bB) are the "double B" factor, and the familys
change in definition and meaning of the total crisis situation (cC) is labeled the
double C factor. If the family is able to utilize and implement bB and cC in
effective ways when aA occurs, then their xX (i.e., family adaptation balancing)
is said to lead to bonadaptation (i.e., positive adaptation). If the family is not
able to use these factors effectively, the results generally lead to maladaptation
(i.e., poor adaptation; pp. 15-17), which then exacerbate the pile-up of stressors.
Lets now discuss each component of the ABCX Model and the Double ABCX
Model in more detail.

ABC-X Model: Hill's Original Model

Stressor (Factor a): A life event or transition impacting upon the family unit
which produces, or has the potential of producing, change in the family social
system (McCubbin & Patterson, 1983, p. 8). For the purposes of this module,
the stressor will be the chronic illness.

Resistance Resources (Factor b): The familys resources that equip them with
the ability to prevent a stressor from becoming a crisis. A familys available
resources help them to manage and adapt to the demands, hardships, and
changes that a stressor or crisis can create (McCubbin & Patterson, 1983). For
example, with chronic illness, resources can include (McCubbin & Patterson,
1983):

The familys role structure

The familys collective goals
The familys community or neighborhood
Extended family, friends, or the familys church
Shared values and beliefs
The available social support
Characteristics of each individual family member
The familys level of expressiveness
Perception (Factor c): McCubbin and Patterson (1983) state that, The c factor
in the ABCX Model is the definition the family makes of the seriousness of the
experienced stressor. The c factor is the families subjective definition of the
stressor and its hardships and how they are effected by them. This subjective
lens comes from pervious experiences, values, and beliefs. A familys perceptive
lens can make the difference between seeing a stressor as a challenge, or
seeing the same stressor as a crisis. (McCubbin & Patterson, 1983)

Crisis (Factor x): In Hills (1949, 1958) original ABCX Model, Crisis (the x
factor) has been conceptualized as a continuous variable denoting the amount
of disruptiveness, disorganization, or incapacitatedness in the family social
system (Burr, 1973, as cited in McCubbin & Patterson, 1983, p. 10). A family
can prevent a crisis (factor x) from occurring if they are able to use the interplay
of the following factors to their advantage:

1. The stressor, stressor events, or hardships presented to the family [i.e.,

factor a]
2. The familys resources available to them to deal with factor a [i.e., factor
b]

3. The definition the family makes of factor a [i.e., What is the meaning they
make of it?; factor c] or the way they view it
4. The resulting stress and/or distress resulting from the combination and
interplay of factors a, b, and c (McCubbin & Patterson, 1983).

Double ABC-X Model: McCubbin & Patterson

Pile-Up (Factor aA): Since crises occur over a period of time, and often occur
simultaneously (not just one at a time) it is very common for families to
experience a pile-up of stressors. There are five broad types of stressors that
McCubbin & Patterson (1983) identified as commonly contributing to a pile-up
for the family:

1. The initial stressor and its hardships

2. Normative transitions (e.g., children leaving the home to start college)

3. Prior strains (e.g., stressors the family is still coping with when another
stressor or strain is introduced and experienced)

4. Consequences of family efforts to cope (e.g., an inability to cope well

leads to more stress)

5. Ambiguity (e.g., not knowing what will happen next; an inability to find
closure to a stressor or situation)

Family Adaptive Resources (Factor bB): There are two general types of
adaptive resourcesa familys adaptive resources can be: (1) existing resources
or (2) expanded family resources (McCubbin & Patterson, 1983).

1. Existing resources are already part of the familys repertoire and serve to
minimize the impact of the initial stressor and reduce the probability that the
family will enter into a crisis (McCubbin & Patterson, 1983, p. 15). For
example, the degree to which a family is cohesive is an existing resource, as
is the familys previous experience with the same or a similar stressor
(Rolland, 1994).
2. Expanded family resources are new resources. The new resources can be
ones developed by the family or existing resources that the family has
strengthened as a response to the crisis or as a result of pile-up. For
instance, the family has learned what agencies or organizations to access
when presented with health care needs.

Perception (Factor cC): McCubbin and Patterson (1983) stated: The cC factor
is the meaning the family gives to the total situation which includes the stressor
believed to have caused the crisis, as well as the added stressors and strains,
old and new resources, and estimates of what needs to be done to bring the
family back into balance. In other words, it is the familys subjective world-view
in relation to their specific stressors.

For example, in relation to perceptions (factor cC), in an article by Gordon, et al

(2002), the authors found that women who were religious were better able to
cope than those who did not practice spirituality/religiosity. Similarly, Roland and
Walsh (2005) found that chronically ill individuals who found ways to help others
or advocate social policy found greater meaning in their illness, and
consequently coped better. Both are examples of how experiences, beliefs, and
values shape the way one perceives the illness.

Family Adaptation Balancing (Factor xX): This is a continuous variable, in that

it varies on a continuum from bonadaptation (positive changes and reactions to
the original stressor [a] and/or pile-up [aA]) to maladaptation (negative
changes and reactions to a and/or aA). McCubbin & Patterson (1983) further
posit: Systems theorists (Hill, 1971; von Bertalanffy, 1968) point out that it is
characteristic of living systems to evolve toward greater complexity, and
consequently, families may actively initiate changes to facilitate such growth (p.
17). Therefore, maladaptation, even though initially it may be stressful and
anxiety provoking to the family, may help to promote change within the family
system. For instance, in a state of maladaptation, the family may feel they have
hit rock bottom. However, in this condition, they will realize that changes need
to be made to get them out of their plight. With this in mind, maladaptation may
ultimately lead to changes in the overall way families react to stressors and pile-
up, and utilize and view their resources and stressors.

The Family Systems-Illness Model

When an individual in a family is diagnosed with a chronic illness, it is
appropriate to expect the stress level within the family to increase. As discussed
earlier, the ABCX Model is classified as a stress theory. The Double ABCX
Model was specifically looked at in order to help you, the user, better understand
the process of stress within a family unit. When a family is faced with a chronic
illness of a family member, the family experiences a stressor that adds to their
overall stress level. For example, chronic illnesses are usually just thatchronic
and therefore are often unable to be cured. As opposed to other illnesses,
chronic illnesses have to be lived with and endured. The Family Systems-Illness
Model developed by John Rolland (1994) is designed to specifically aid
clinicians in helping families develop ways of coping with a chronic illness.
Rollands model will now be discussed and later integrated with the Double
ABCX Model. The integration will better illustrate how a chronic illness affects:

The Pile-Up Factor (aA)

The Family Adaptive Resources Factor (bB)
The perceptions Factor (cC)
The Family Systems-Illness Model focuses on the interface of the illness and the
family system (see figure 1 below) (Rolland, 1994, 2005).
 Figure 1.
Interface of Chronic Illness and the Family

Rolland's Phases of Illness

In keeping with the systemic view, Rolland posits that when there is a change in
one family member, this affects the entire family unit, which then affects the first
family member (circular chain of influence). The Family Systems-Illness Model is
designed to help families understand the illness life cycle (see figure 2 below)
and the corresponding psychosocial demands that accompany each stage of
that cycle.

Figure 2. Time
Line and Phases of Illness

The first step: Rollands (2005) model helps the family facing a chronic illness
to normalize and contextualize their experience (p. 287). This requires the
family to become educated on the illness and become familiar with the timeline
of how the illness will progress (Rolland, 1994).

The second step of the Family Systems-Illness Model is for families to

understand how they function as a system (Rolland, 1994). The family as a
whole is called a system and each family member is a part of that system. If
one part of the system changes, other parts (i.e., family members) often change
to make up for the first change (i.e., family member). Each part of the system is
connected to other parts, and therefore the entire structure of the system.

The third step is for the family to understand the family life cycle. The family
will learn how to adapt to the changes that will be occurring within the family as
a result of the chronic illness.

The last step of the model is for the family to become aware of the ways that
their values, beliefs, and culture/ethnicity affect their perception of the chronic
illness (Rolland, 1994).

Rolland's (1994 & 2005) Family Systems-Illness Model allows you to work
collaboratively with the family to develop a roadmap for the course of the
chronic illness. As a clinician, you can help the family recognize how their
strengths, vulnerabilities, and family life cycle can be affected by the
psychosocial demands of a chronic illness (Rolland, 2005).

Lets now discuss the specific components of Rollands Family Systems-Illness

Model (as briefly touched upon above) in more detail.

Rolland's Model
Interface of the Chronic Illness and the Family: According to Rolland (1994),
For clinicians and researcher alike, interaction is at the heart of all systems-
oriented biopsychosocial inquiry. In physical illness, particularly chronic and life-
threatening disorders, the primary focus is the system created by interaction of a
condition with an individual, family, and other biopsychosocial systems (p. 11).
With this in mind, and referring to the Figure 2 (previous page) titled Interface
of Chronic Illness and the Family, there are various domains of the family and
the illness that meet and interact. According to Rolland (1994), these include the
following (some are collapsed and included togethersee important note under
Figure 2 (previous page):

Family style and the practical demands of the illness (i.e., interfaces 1
and 1). For example, the degree to which the family is cohesive, adaptable,
and how they communicate, interact with the demands of the illness. If the
illness of a family member is chronic for example, a highly cohesive family
will likely do well at supporting one another and the affected family member.
A highly cohesive family knows what other members need, and can rally
around the ill family member. In contrast, a very distant family will likely
experience more difficulty in supporting one another in this situation
(Rolland, 1994). For example, a family that is very distant from one another
will generally not know how to support each other in a time of crisis.
Family development and the developmental time phases of the
family (i.e., interface 2). The individual development of family members and
the overall development of the family interact with the developmental time
phases of the illness. A family that is still young (e.g., caregivers have been
together a short time and/or young children are present) may have extreme
 difficulty in coping with a diagnosis of a young child with a terminal, chronic
illness. Parents may feel responsible for their childs condition, especially if
the childs condition is genetic. They may blame themselves for passing this
on to their child. Moreover, caregivers may feel even more responsible for
their childs dire situation because children are supposed to grow, mature
and die in old age. Rather, his/her child will likely pass on well before he/she
does. While diagnosis of health conditions is stressful for any family,
diagnosis of children is especially difficult to deal with than an aging adult,
for example.
Family paradigm and meaning attached to the illness (i.e., interface
3). Family beliefs and values can positively or negatively affect the way an ill
family member is supported. For example, if there is a negative stigma
associated with an illness that a family member contracts, how would that
member be treated by the rest of the family, community, and/or culture? If an
adolescent acquires HIV/AIDS through a blood transfusion, how might this be
viewed differently by the family and society than if s/he was to contract it
through intravenous drug use or unprotected sex? Even though an
adolescent does contract HIV/AIDS through a blood transfusion, what type of
stigma is associated with many who have HIV/AIDS in the U.S.? These are
important questions to consider when working with families affected by
certain stigma-laiden health conditions. What is more, a familys beliefs and
culture may help or hinder (though this can vary on a continuum) how well
the family supports and rallies around an ill family member.
Multigenerational history and historical data (i.e., interface 4). A
familys history with illness and crises can often be helpful in seeing the
degree to which they are able to cope with the current illness or disability. If
a family has experienced a similar condition in the past, a contemporary
family member with a similar diagnosis might not present the same challenge
to the family structure as an unknown condition might (i.e., ambiguity).

Illness Life Cycle

Rolland (1994) proposed that illnesses and a familys reactions to illness are not
static, unchanging states. Rather, they are dynamic and constantly changing.
For example, it is common knowledge among caregivers of those who are ill that
some days are better than others. Some days the patient experiences less pain
and distress, whereas other days he/she may experience more. With regard to
the changing experience of illness, by the patient and family, Rolland discusses
three time phases of the illness. These are dynamic periods of time and are
experienced differently by each unique family. Each phase presents with its own
challenges. The time phases of the illness are:

Crisis stage. This is the period of time just before the diagnosis of an
illness or health condition (perhaps when symptoms are starting to become
more salient) or after the diagnosis. This is often a time of excruciating
 vulnerability and uncertainty, in which all experiences seem heightened in
intensity and family members grope for ways to reassert control (Rolland,
1994, p. 44). In this stage there is a lot of stress as the family and patient try
to make sense of what has just happened (i.e., the diagnosis).
Chronic stage. This phase of the illness is the time span between the
initial diagnosis and readjustment period and the terminal phase (below),
when issues of related to death and dying predominate (Rolland, 1994, p.
48). This stage is usually experienced when the health condition is
ascertained to be chronic in nature and the patient and family deal with it day
in and day out. This stage is generally not as unpredictable and stressful as
the crisis stage. Usually in this phase more about the illness is known and
families and patients learn to live with it.
Terminal stage. As aforementioned, this phase of the illness is wrought
with plans and preparations for death and dying. This stage can be both
stressful and extremely emotional. One of the key tasks of this phase is a
shift of anticipation from the probability that the patient is nearing death,
toward the inevitability of death (Rolland, 1994).
In the next section, you will have an opportunity to see how these two models
have been integrated to provide a more specific framework for helping families
affected by the illness of a family member. Before the integrated model is
discussed, please take a few moments to read over the following vignette. You
will later be applying what is presented in this module to the vignette.

Jolol Family Vignette

The following vignette is descriptive of a family you are working with as a home-
based family therapist. You have met with the family once and gathered the
following information. This vignette will be revisited later in the module.

Sam Jolol (as he is called by his wife and friends) is a 44-year-old, Somalian-
American male who recently lost his job at the meat processing plant in Emporia
when it closed its doors. Sam quickly moved his family to Garden City after
being hired at a local beef packing plant a few weeks later. Sam and Jane have
been married for 12 years and have three children. Sams parents still live in
Somalia and his mother is in poor health. Jane is Caucasian and her parents still
live in Emporia. The ages of their children are 12, 10, and 6. The move was
difficult for the entire family. Most of their family and friends live in Emporia, and
Jane had to quit her part-time job because of the move to Garden City. Shortly
after moving to Garden City, Sam suffered a stroke, which left the right half of
his body paralyzed. He also suffered some cognitive impairment as a result of
his stroke. Unable to perform the rigorous duties associated with his work, Sam
was not able to return to his job. He is often cared for by his two oldest children.
Jane found a new job in Garden City after several months of searching. Her new
job, even though it is full-time work, does not pay as well as her previous
employer in Emporia. Jane works 40+ hours per week, in addition to caring for
Sam when she is home from work, and taking the children to and from various
activities. Their 6-year-old child has recently started hitting and being physically
aggressive toward other children at school. The oldest child has recently
reported sleep disturbances and not enjoying her usual activities. In addition,
her previous 4.0 GPA has plummeted. The ten-year-old child has not exhibited
any difficulties since the move.

Journal- How does working with a family where a member is battling a chronic
illness affect your work as a home-based family therapist? If you have not yet
delt with this issue, how might working with a family in this situation affect your
work?

Forming a Unified Framework

POINTS OF MODEL INTEGRATION
Each of the above models nicely pertain and can be used to help families
affected by illness. The Double ABCX Model (McCubbin & Patterson, 1983)
provides a nice framework of how families cope when stressors/strains are
presented. The framework also illustrates the degree to which the family
implements resources and explores their perceptions to help them cope when
faced with illness or disability. If they are not able to cope well, a crisis occurs.
Then, when exposed to other stressors/strains, this crisis is piled-up with these
additional challenges, and is then experienced by the family to a greater degree.
How well the family deals with the pile-up leads to the degree of family
functioning. This is measured on a continuum ranging from bonadaptation (good
adaptation) to maladaptation (poor adaptation). As a general framework, the
ABCX Model does not necessarily pertain to illness and disability, though these
are often major stressors for families, and therefore apply to this model. On the
other hand, Rollands Family Systems-Illness Model (1994) is specifically geared
to families dealing with illness. In fact, his model specifically deals with the
family structure and the timeline or phases of illness, whereas the ABCX Model
does not necessarily detail phases of time associated with stressors and strains.

Points of Model Integration

In this section, concepts from Rollands model have been applied to the Double
ABCX Model. In some ways it appears that Rollands model elaborates upon the
Double ABCX Model and seems to give specific examples to the Double ABCX
Model as it relates to illness and disability. First, the specific stressor/strain
presented to the family is the actual type of illness or disability itself. For
example, Rolland (1994) posited that the course of the illness presents certain
challenges that another illness may not. Some diseases are more difficult and
costly to deal with than others. Some diseases are progressive while others are
episodic. Second, in his interface of chronic illness in the family, he discusses
the resources (as presented in the Double ABCX Model) that a family can bring
when faced with a chronic illness. So, to illustrate this point, in his model, family
style (the degree to which a family communicates, is cohesive, and adaptable)
can affect coping with the challenges of a specific type of illness or disability (as
explained above). Third, he discussed how the family paradigm and meaning of
the illness (stigma attached to it) come together. For example, how do family
beliefs and values affect how the family perceives and deals with the illness?
How does the family approach the illness? How does the patients peers and
community view the illness?

One of the other things that Rollands model contributes to the ABCX Model is
that of the inevitability of pile-up when families are faced with a chronic illness.
The family is constantly readjusting and changing with the amount of internal
and external stressors placed on them as a result of the illness and the costs
associated with the illness. In this dynamic state, they then fluctuate somewhere
on the continuum of adaptation between mal- (bad) and bonadaptation (good).
As mentioned previously, with illness, each day presents differently than others.
Some days the patient is found with little pain and/or distress associated with
the illness. Other days find the patient and family reeling from the pain and
distress associated with the medical condition, as well as from other stressors
and strains. Therefore, it is possible for the family to be adjusting well to the
stressors/strains presented to them (e.g., the demands of the illness, phase of
the illness, costs associated with the illness) one day, and then to not be
adjusting well the next day. With this in mind, a familys functioning or type of
adaptation is constantly in a state of flux and varies on the continuum
somewhere between bonadaptation to maladaptation.

Using Strategies and Techniques

ASSESSMENT
The following strategies and techniques provide examples of ways to help
families affected by chronic illness using the two models described in this
module.

Strategies

Solicit the illness story from the family (McDaniel, Hepworth, Doherty,
1992)
o Ask the family to tell you about when and how they found out the
family member had a chronic illness or disability
o Ask the family to describe how they reacted during this time
o This period of time represents the crisis phaseof illness (Rolland,
1994)
Techniques

Set reasonable therapeutic goals with the family that are informed by the
integrated model as presented in this module. Therapeutic goals should help
the family recognize how the illness and their family interface and respond in
correlation to one another.
o Short-term goals help the family deal with overwhelming emotions,
reactions, and behaviors that are likely to be experienced in the crisis
phase of the illness. The crisis phase is around the time the family
member was diagnosed with a chronic illness or disability (e.g.,
stressor(s)/strain(s))
o Long-term goals help the family to live and cope with the chronic
phase of illness and its demands. This includes coping with living with the
illness or condition day in and day out (e.g., stressor(s)/strain(s))
They should also incorporate aspects of the Double ABCX Model.

Treatment
Strategies

Gather the familys history around this illness and other illnesses. This
strategy is geared toward helping the family recognize interfaces 3 and 4, as
presented in Figure 1.
Techniques

Draw a three-generation genogram of the family

Have family help you label family members with physical illnesses and/or
mental health conditions
Ask patient who they relate to the most on the genogram
o Ask the patient how they relate to that family member
Ask the family circular questions. This is meant to elicit information that
covers interfaces 1-4 in Figure 1. Circular questions have the potential to
 cover all of the interfaces of the family and the illness, and to garner more
assessment information, as well as move the family forward toward
therapeutic goals.
o Ask the parents/caregivers what it must feel like to be a child with a
chronic illness
o Ask the children what it must be like to have a chronically ill child
Identify phases of illness (Rolland, 1994) and what phase the family is in
when presented for therapy (e.g., crisis, chronic, terminal). This has the
potential to inform both the family and the clinician as to what might be
expected for the family. For example, in the chronic phase it is not
uncommon for the family to feel in a state of chaos and overwhelming
emotionality (Rolland, 1994).
o Ask the family how they knew or will know when they are moving to
the next phase, after explaining to them what types of things typify each
phase.
Draw Double ABCX Model on whiteboard and have family identify their
stressors/strains, resources, perceptions, and coping mechanisms and pile-
up. When the family responds to the following questions, also explore with
them how the factors of the Double ABCX Model overlap with the Family
Systems-Illness Model.
o How have they dealt with these in the past?
o How have previous family generations dealt with these same
issues?
o How might this model [the Double ABCX Model] correlate with the
phases of the illness? For example, the crisis phase of the illness is
likely to coincide with the pile-up of stressors/strains (aA factor).
Education and Psychoeducation
o Help make clients aware of resources (e.g., HealthWave,
community/local support groups, drug studies [free participation])
o Educate the family about literature on the patients illness/condition
Strengthen ties between the family and health-care team (Rolland, 1994)
o Have the family ask the physician questions about the illness,
prognosis, etc. This has the potential to strengthen the familys existing
and new resources (bB factor), and then the family is better able to
bolster their perceptions (cC factor). The family can thus use their
resources and perceptions in the face of pile-up of stressors/strains (aA),
which then leads to bonadpatation (i.e., good adaptation; xX factor).

Ending Therapy
Strategies

Review goals and progress of family and family members. This has the
potential to improve the familys recognition of their ability to use resources
 (bB factor) and perceptions (cC factor) in battling with the stressors/strains
(aA factor) to lead them to a state of bonadaptation (xX factor).
Brainstorm with family relapse prevention strategies. This can come after
discussing the familys goals and improvements. The clinician can explore
with the family the way things used to be before they improved. Then,
discussing the interfaces of the illness and the family (Figure 1),the family is
encouraged to list what things they need to work on or bolster to prevent
them from going back to where they were when they were first presented for
treatment. To illustrate, the family identifies that (along interfaces 1 of Fig. 1)
their level of cohesiveness has improved as a result of therapy. They then
share that they will know their level of cohesiveness is starting to dissipate
when they start arguing more. The clinician then asks them to review things
they can do to prevent them from arguing more. Or, if they start arguing
more, what are the things they can do to become cohesive again. The
clinician then encourages these techniques.
Ensure the family trusts their physician and health-care team (Rolland,
1994). This can be a short-term and a long-term goal for the family,
especially if they have had bad experiences with the health-care team in the
past (Rolland, 1994).
Let the family know the door is open. This means that they can return for
1 or 20 sessions in the future, if it is needed and would be helpful. This can
also be emphasized when discussing relapse prevention techniques (as
presented above). If the family feels it is necessary, they can have home-
based family therapy again. This is especially true when the family feels they
are starting to slip back to old ways and feel they cannot fix these issues on
their own.

Applying the Framework & Post-Test

JOLOL FAMILY VIGNETTE
Sam Jolol (as he is called by his wife and friends) is a 44-year-old, Somalian-
American male who recently lost his job at the meat processing plant in Emporia
when it closed its doors. Sam quickly moved his family to Garden City after
being hired at a local beef packing plant a few weeks later. Sam and Jane have
been married for 12 years and have three children. Sams parents still live in
Somalia and his mother is in poor health. Jane is Caucasian and her parents still
live in Emporia. The ages of their children are 12, 10, and 6. The move was
difficult for the entire family. Most of their family and friends live in Emporia, and
Jane had to quit her part-time job because of the move to Garden City. Shortly
after moving to Garden City, Sam suffered a stroke, which left the right half of
his body paralyzed. He also suffered some cognitive impairment as a result of
his stroke. Unable to perform the rigorous duties associated with his work, Sam
was not able to return to his job. He is often cared for by his two oldest children.
Jane found a new job in Garden City after several months of searching. Her new
job, even though it is full-time work, does not pay as well as her previous
employer in Emporia. Jane works 40+ hours per week, in addition to caring for
Sam when she is home from work, and taking the children to and from various
activities. Their 6-year-old child has recently started hitting and being physically
aggressive toward other children at school. The oldest child has recently
reported sleep disturbances and not enjoying her usual activities. In addition,
her previous 4.0 GPA has plummeted. The ten-year-old child has not exhibited
any difficulties since the move.

Applying the Framework with the Jolol Family

An example of how the integrated model applies to a clinical situation around

chronic illness will now be given.

Vignette Applied to Integrated Model

Shortly after moving to Garden City, Sam suffered a stroke, which left the right
half of his body paralyzed (e.g., factor A-Stressor/The Illness). He also suffered
some cognitive impairment as a result of his stroke. Unable to perform the
rigorous duties associated with his work, Sam was not able to return to his job
(e.g., factor aA-Pile Up/lack or exhaustion of resources). He is often cared for by
his two oldest children (e.g., factor aA-Pile Up/lack or exhaustion of resources).
Jane found a new job in Garden City after several months of searching. Her new
job, even though it is full-time work, does not pay as well as her previous
employer in Emporia. Jane works 40+ hours per week, in addition to caring for
Sam when she is home from work, and taking the children to and from various
activities (e.g., factor aA-Pile Up/lack or exhaustion of resources). Their 6-year-
old child has recently started hitting and being physically aggressive toward
other children at school (e.g., factor aA-Pile Up/lack or exhaustion of resources).
The oldest child has recently reported sleep disturbances and not enjoying her
usual activities. In addition, her previous 4.0 GPA has plummeted (e.g., factor
aA-Pile Up/lack or exhaustion of resources). The 10-year-old child has not
exhibited any difficulties since the move.

In addition to the pile up that occurred because of the stroke, since this model is
fluid, the effects of the previous pile up also would be a part of the overall
experience of the model. For instance, they would still be adjusting to the move,
and Sams mother would still be in poor health (e.g., factor aA-Pile Up/lack or
exhaustion of resources).

Furthermore, the course of the illness will also affect the family in that the family
will be transitioning (e.g., factor aA-Pile Up/lack or exhaustion of resources)
from the crisis stage to a chronic stage as the family comes to terms with the
fact that Sam conditions will be enduring, and may likely be a lifelong struggle
(perceptions).

At the point of intersection the familys resources and perceptions will determine
the familys ability to cope with the pile up (Coping).