Journal of Advanced Nursmg, 1996, 23, 786-791

Chronic illness and the family life-cycle

Nancy M Newby PhD(e) RN
Nurse Manager, Medical Divisions, Chnstian Hospital Northeast, St Louis, Missoun,
USA

Accepted for publication 24 Mav 1995

NEWBY N M (1996) Journal of Advanced Nursing 23, 786-791

Chronic illness and fanuly life-cycle
Chronic illness is currently the outstanding health issue m the United States Jt
creates increased family stress, requires constant adaptation hy the fanuly
members and poses a challenge to nurses to better understand and meet the
needs of the family as well as the individual This paper presents a psychosocial
typology of chronic illness and discusses the importance of time phasing of the
chronic illness A conceptual framework for analysing the interaction of chronic
illness with family and individual life-cycles is outlined Knowledge of
life-cycle stressors is essential for nurses to better delineate the relationship
between the vertical and horizontal life stressors which affect the family system

upon the family (Shaw & Halliday 1992) Recent changes

INTRODUCTION m the financing of health care have resulted m an escal-
Chrome illness is currently the outstanding health prob- ation of reliance on families for long-term care In many
lem m the United States of America (Larkin 1987) Lambert instances, families assume the role of care provider for
& Lambert (1987) reported that approximately 110 million extended periods of the family life-cycle The family unit
people within the United States are presently afflicated in our modem society must be d5mamic and evolutionary,
with one or more chronic illnesses Of the persons affected, to maintain stability and to manage the stresses of both
nearly 32 4 million are significantly limited m their daily normal transition phases and crises which are out of the
activities as a result of their disease (Lubkin 1986) The ordinary, such as chronic illness
purpose of this paper is to present a psychosocial typology Family responses to chronic illness vary according to
of illness and to discuss the time phasing of illness, to the age and the developmental stage of the ill individual,
provide a comprehensive view of chronic illness Family the strength and coping mechanisms of family, and the
systems theory and the family life-cycle perspective are family life-cycle stage To place the unfolding of chronic
used as frameworks to study how families adapt to chronic illness into a developmental context, it is crucial to exam-
illness m order to improve nursing care Wright & Leahy ine the intertwining of three evolutionary threads the ill-
(1984) stated that nurses can assist families m adapting to ness, the individual, and the family life-cycle (RoUand
chronic illness and can provide essential support to the 1987)
family system
Miller (1992) defined chronic illness as a permanently
PSYCHOSOCIAL TYPOLOGY OF CHRONIC
altered health state, caused by a non-reversible pathologi-
ILLNESS
cal condition, which leaves residual disability which
cannot be corrected by a simple surgical procedure or It IS important to link the client's and the family's psycho-
cured by a short course of medical therapy Although social dimensions uito the chronic illness typology This
chronic illness has a profound effect upon the individual, scheme is very beneficial for nurses because it helps to
an immense responsibility is simultaneously imposed define and classify the illness and to clarify the relation-
ship between the illness and family life The tj^ology con-
Correspondence Nancy Newby 217 Whispenng Oaks Dnve Bethalto ceptualizes broad distinctions of onset, course, outcome
Illinois 62010 USA expected, and the degree of mcapacitation expenenced by

786 © 1996 BlackweU Science Ltd

 Chronic illness and family life-cycle

the individual who is chronically Ul The tjrpology also colitis are examples of episodic diseases which reqmre
identifies related family stresses (see Figure 1) families to change roles back and forth, depending on the
current health status of the ill member The uncertainty
and frequent role changes add tremendous stress to the
Onset
family unit
Illnesses c£in be divided into those which have an acute
onset, such as a stroke or myocardial infarction, and those
with a gradual onset, such as arthritis or Alzheimer's dis-
Outcome expected
ease Diseases with a gradual onset allow families some The extent to which a chronic illness may cause death and
time for ad)ustnient to the illness and time for family adap- the degree to which it may shorten one's life span are
tation Significant alteration of roles within the family may crucial features distinguishing illnesses
be necessary to compensate for the ill member Illnesses At one end of the spectrum are metastatic cancer or
which strike quickly place the entire family into an severe cardiomyopathy which pose an immediate threat
immediate crisis, with major readjustments compressed to life These types of diseases create an undercurrent of
into a very short time frame anticipatory grief and separation, and a sense of impending
doom which affect all phases of family adaptation
At the opposite end of the continuum are chronic con-
Course ditions which normally do not threaten one's life or typi-
The course of chronic illness is essentially progressive, cally shorten hfespan, such as blindness or migrmne
constant, or episodic A progressive disease, such as headaches However, family adaptation in the non-life
Alzheimer's disease, is one that is continuously sympto- threatening illnesses must focus on long-term adjustments
matic and progressive Farmly members are faced with a and stable, permanent realignment of roles
symptomatic family member, whose condition is steadily
worsening They are challenged constantly to adapt roles
Incapacitation
and reorganize family structures to care for the ill member
A constant-course illness is one in which the course Incapacitation refers to an impairment of functioning due
stabilizes after an lmtial crisis event, such as a stroke After to a defect or severe disability IncapacitaUon can result
the initial period of crisis and adjustment, families can from impaired cognition, movement, or energy level, or
stabilize the care for the chronically ill member from physical deformities or other medical causes of
The episodic or relapsing course is one which alternates stigmas
stable periods of varying length with tunes of acute exacer- The type and severity of incapacitation is a very sig-
bations or flare-up Illnesses such as asthma or ulcerative nificant factor m determining the stress experienced by

Figure 1 Chronic disease ONSET COURSE

typology along illness time
lme • progressive
• acute • constant
• gradual > episodic

OUTCOME INCAPACITATION

• life threatening • mild

• chronic non- ' severe
life threatening ' multi-system

© 1996 BlackweU Science Ltd, Journal of Advanced Nursing, 23, 786-791 787
NM Newby

families For example, the combined physical and cog- approach relevant to health care must permit the study of
nitive effects of a stroke can stress the family more than the dynamic individual, the dynamic family imit, and their
an injury or illness which affects only the person's mter-relatedness (Whall & Fawcett 1991)
energy production while allowing retention of cognitive Clements & Roberts (1983) defined a family as a social
facilities system comprised of two or more persons who co-exist
Assessing the four attributes of a chrome illness (onset, withm the context of some expectations of reciprocal
course, outcome, and incapacitation) is essential for affection, mutual responsibility, and temporal duration
nurses, in order to classify the chronic illness correctly, toGillis et al (1989) offered a broader view of family that
identify the family stressors involved, and to develop nurs- includes a three-generational group of individuals having
ing interventions for family care close emotional bonds, who meet affectional, socio-
economic, and socialization needs of one another and of
the family system
The illness tune line Wright & Leahy (1987) defined family health as a
Rolland (1989) described the natural history of chronic dynamic, relative state of well-being Five dimensions, the
illness within three time phases the crisis, chronic, and biological, psychological, sociological, spiritual and cul-
terminal phases The crisis phase is lmtiated with first tural, all combine into a holistic system One measure of
symptom onset and extends through diagnosis This phase family health is the ability of the family to organize and
creates high stress for families who are shocked and ang- rally in the face of challenge When the family's resources
ered by the sudden illness, and who are unprepared for are insufficient to meet the challenge, family stress occurs,
the role changes and family adjustments required and the family needs to seek outside help
The chronic phase is the timespan from mitial diagnosis The family adaptation model, developed by Riehl & Roy
through treatment and readjustment The chronic phase (1980) views the family as an adaptive system with inputs,
requires prolonged adjustments and the establishment of internal control and feedback processes, and output In
a level of family normality to deal with the illness The this adaptation model, the focus of nursing is a concern
attempt by the family to maintain a semblance of normal for the family as a total unit on a health-illness continuum,
life under the abnormal conditions of chrome illness is a with assessments and mterventions directed toward help-
key task for the entire family mg patient and family to adapt Families of chronically
The final, terminal phase occurs when death becomes ill people incur many biological, psychological, and
apparent and family grieving begins This phase is marked sociological losses, and there are no clear-cut norms of
by separation, death, gnef, and resolution of mourning behaviour for anyone involved (Craig & Edwards 1983)
The three time phases illuminate critical transition Adaptation is the ultimate family nursmg goal m dealing
points m the natural developmental phases of an illness with chronic illness (Pollock 1985)
The interaction of the time phases and the typology of
illness, provides a basis for nursing assessment and a
FAMILY LIFE-CYCLE PERSPECTIVE
framework to relate chronic disease with psychosocial and
developmental tasks The development of a life-cycle perspective originated
with the work of Enkson (1950) and was further defined
by Duvall (1977) Duvall conceptualized the family life-
FAMILY SYSTEMS THEORY cycle according to different transitional stages related to
The systems approach to the study of the family is based the coming and going of members marriage, birth and
upon the theory derived from physics and biology by raising of children, launching of children, retirement,
Bertalanffy (1968) A system is composed of a set of inter- and death
active elements, and yet each system is distmet from the When a family member is diagnosed as having a chronic
environment in which it exists An open system exehanges illness. It may be helpful to simultaneously study the inter-
energy and matter with the environment to evolve toward action of the individual and family A central concept is
greater order and complexity This concept of negentropy that of the life-cycle A cycle suggests an underlymg order
can be adapted and applied to the family of the life course whereby individual, family, or illness
Rogers (1983) viewed the family as an 'irreducible, four- uniqueness occurs withm an unfolding time sequence
dimensional negentropic energy field The family is Illness, individual, and family development have in
viewed as an irreducible whole that is not understood by common the notion of eras marked by constant changes in
knowledge of individual members' From this theoretical building and mamtainmg functions through transitional
framework, the family is considered to be ui a state of periods of development Transition periods are potentially
change which is contmuous and innovative Family the most vulnerable because previous mdividued, family,
characteristics are manifestations of the constant inter- and illness life structures are reappraised m light of new
action of family with the environment A theoretical developmental tasks

788 © 1996 Blackwell Science Ltd, Journal of Advanced Nursing, 23, 786-791
 Chronic illness and family life-cycle

Cicirelli (1985) stated that the family is considered as adequately comprehended apart from its history (Bowen
the motion of a three- or four-generational system as it 1978)
moves through time Families incorporate new members The honzontal flow in the system mcludes anxiety pro-
only by birth, adoption, or mamage, and members can duced by stresses on the family moving through time
leave only by death Each family member has roles and These mclude the developmental and transitional issues
functions, but the mam value m families is m the support- which normally occur in time However, this also may
ive and nurturmg relationships (Woods ef al 1989) mclude unpredictable, out of the ordinary life events, such
As shown m Figure 2, the individual who requires care as chronic illness
IS the centre of the family system The family, which Carter & McGoldnck (1989 p 8) suggested that
includes nuclear and extended members, surrounds the The degree of anxiety engendered hy the stress on the vertical
individual and provides both support and structure The and the horizontal axes at the pomts where they converge is the
individual life-cycle takes place withm the fanuly life- key determinant of how well the family wiU manage its trans-
cycle, and it IS this mterconnectedness that is the pnmary itions through life Although all normative change is to some
context of human development The family life-cycle is
degree stressful, it has been observed that when the horizontal
enclosed within and closely connected to its community
(developmental) stress intersects with a vertical (transgener-
The stability and health of the community may affect the
ational) stress, there is a quantum leap m anxiety within the
functioning of the family system sigmficantly Sirmlarly,
family system
the society in which the community exists may affect the
social, cultural, political, economic, and religious status
of each mdividual and each family unit The health and
INTERFACE OF ILLNESS, THE INDIVIDUAL
normal funetionmg of each system level is, to some degree,
AND THE FAMILY SYSTEM AND LIFE-
dependent on the health of the other levels
CYCLE
Family stresses, which are likely to occur around the
hfe-cyele transition points, often result m disruption of The concept of centripetal versus centrifugal family phases
the life-cycle and increased stress on the family (Walsh in the family life-cycle is particularly useful m examining
1978) Carter (1978) outlmed family stress and the flow the integration of family, individual, and illness develop-
of anxiety m a family as both vertical and honzontal ment (Beavers 1982) This eoncept portrays a three-
stressors on a time lme The vertical flow m a system generational family system osciUaUng through time
includes patterns of relating and functioning transmitted between periods of family closeness (centripetal) and per-
down the generations of a family It mcludes all of the iods of family distancing (eentrifugal phases) Literally,
family attitudes, expectations, and labels, and the taboos 'centripetal' and 'centnfugal' describe a tendency to move
the children learn Systems-onented researchers have towards and away from the centre In life-cycle terms, they
emphasized that a family's present response cannot be connote a fit between developmental tasks and the relative

Figure 2 Life-cycle stressors

From Carter B & VERTICAL STRESSORS
McGoldrickM The Changing i generational
Family Life Cycle 1989, AUyn attitudinal
& Bacon, Boston Reprinted by expectations
permission taboos
stigmas

Time
HORIZONTAL
STRESSORS
• developmental
• transitional FAMILY
• unprechctat>le & Centnfugal
non-normative COMMUNITY forces
(chronic illness)
SOCIETY
Centnpetal
forces

789
© 1996 BlackweU Science Ltd, Journal of Advanced Nursmg, 23, 786-791
NM

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© 1996 BlackweU Science Ltd, Journal of Advanced Nursmg, 23, 786-791 791