FAMILIES, HEALTH, AND ILLNESS

Chapter 13Handbook of Health Social Work, 2nd Edition

Created by Teri Browne

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)

FAMILY SYSTEMS-ILLNESS MODEL

Needs to encompass all people effected 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 (differing 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

EFFECTIVE PSYCHOSOCIAL MODEL

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. They need a time frame for disease related to how conditions unfold over time.

2. Families need to understand themselves as a systemic functional unit.

3. 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.

4. Families need to understand the cultural, ethnic, spiritual, and gender-based beliefs that guide the type of care giving system they construct.

NORMATIVE CONTEXT

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?

PSYCHOSOCIAL TYPES OF ILLNESS

Onset – can be either an acute (sudden) onset or a gradual onsetCourse – progressive, constant, relapsing/episodicOutcome – “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 effectsIncapacitation – 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

ILLNESS CLASSIFICATION MEASURES

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

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 effected this timeline? What other issues do you think have arisen because of medical advances that may have implications for this model?

TIME PHASES OF ILLNESS CONT.

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

CLINICAL & RESEARCH IMPLICATIONS

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 time-limited (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

PSYCHOEDUCATIONAL FAMILY GROUPS

Time and belief systems affect 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 differences in its styles and successes in adapting to different 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?

FAMILY ASSESSMENT

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?

INTERFACE OF THE ILLNESS, INDIVIDUAL, AND FAMILY

DEVELOPMENT

A chronic disorder influences the development of the affected person and various family members

Factors to consider: age of onset of illness, core commitments in the affected person, 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 occurs

Need for family cohesion varies enormously with different 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 perspective 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 effect how a family deals with an illness?

INDIVIDUAL AND FAMILY DEVELOPMENT

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 bodyFamily 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

HEALTH/ILLNESS BELIEF SYSTEM

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

BELIEFS ABOUT NORMALITY

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?

MIND-BODY RELATIONSHIPS

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 different belief schemas? These beliefs effect each family member’s relationship with the illness and health care systemFamilies may adhere to a different 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’S SENSE OF MASTERY FACING 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

FAMILY BELIEFS ABOUT THE CAUSE OF AN ILLNESS

Families and health care providers need to differentiate 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.

BELIEF SYSTEM ADAPTABILITY

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.

ETHNIC, SPIRITUAL, AND CULTURAL 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 differences 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 differences 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?

FIT AMONG HEALTH-CARE PROVIDER, HEALTH SYSTEM, AND FAMILY BELIEFS

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

CHALLENGES IN IMPLEMENTATION OF FAMILY-BASED RESEARCH