Families and Chronic Illness

Module Sections:

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 member’s 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 nation’s $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 life’s 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:


Establishing a Common Ground

What is a Chronic Illness?

A chronic illness is “a long-term or permanent illness that interferes with a person’s 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 clinician’s definitions of the patient’s 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 user’s unique, individual experiences from his or her background. The team also acknowledges each user’s 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 member’s 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, Hill’s 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 Hill’s 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 Hill’s (1949, 1958) ABCX Model. The family’s adaptive resources (bB) are the "double B" factor, and the family’s 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.

ABCX Model Chart

Let’s 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 family’s resources that equip them with the ability to prevent a stressor from becoming a crisis. A family’s 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 family’s role structure
  • The family’s collective goals
  • The family’s community or neighborhood
  • Extended family, friends, or the family’s church
  • Shared values and beliefs
  • The available social support
  • Characteristics of each individual family member
  • The family’s 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 family’s 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 Hill’s (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 family’s 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 resources—a family’s adaptive resources can be: (1) existing resources or (2) expanded family resources (McCubbin & Patterson, 1983).

  1. Existing resources “are already part of the family’s 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 family’s 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 family’s 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 that—chronic—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. Rolland’s 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 FamilyFigure 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 IllnessFigure 2. Time Line and Phases of Illness

The first step: Rolland’s (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).

Let’s now discuss the specific components of Rolland’s 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 together—see 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 child’s condition, especially if the child’s condition is genetic. They may blame themselves for passing this on to their child. Moreover, caregivers may feel even more responsible for their child’s 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 family’s 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 family’s 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 family’s 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. Sam’s 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.

Jolol Family Chart

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, Rolland’s 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 Rolland’s model have been applied to the Double ABCX Model. In some ways it appears that Rolland’s 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 patient’s peers and community view the illness?

One of the other things that Rolland’s 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 family’s 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)
    • Ask the family to tell you about when and how they found out the family member had a chronic illness or disability
    • Ask the family to describe how they reacted during this time
    • This period of time represents the “crisis phase”of 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.
    • 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))
    • 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 family’s 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
    • 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.
    • Ask the parents/caregivers what it must feel like to be a child with a chronic illness
    • 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).
    • 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.
    • How have they dealt with these in the past?
    • How have previous family generations dealt with these same issues?
    • 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
    • Help make clients aware of resources (e.g., HealthWave, community/local support groups, drug studies [free participation])
    • Educate the family about literature on the patient’s illness/condition
  • Strengthen ties between the family and health-care team (Rolland, 1994)
    • Have the family ask the physician questions about the illness, prognosis, etc. This has the potential to strengthen the family’s 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 family’s 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 family’s 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. Sam’s 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 Sam’s 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 family’s resources and perceptions will determine the family’s ability to cope with the pile up (Coping).


Post Test

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