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

Chronic illness and the family life-cycleNancy M Newby PhD(e) RNNurse 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, 786-791Chronic illness and fanuly life-cycleChronic illness is currently the outstanding health issue m the United States Jtcreates increased family stress, requires constant adaptation hy the fanulymembers and poses a challenge to nurses to better understand and meet theneeds of the family as well as the individual This paper presents a psychosocialtypology of chronic illness and discusses the importance of time phasing of thechronic illness A conceptual framework for analysing the interaction of chronicillness with family and individual life-cycles is outlined Knowledge oflife-cycle stressors is essential for nurses to better delineate the relationshipbetween the vertical and horizontal life stressors which affect the family system

INTRODUCTION

Chrome illness is currently the outstanding health prob-lem m the United States of America (Larkin 1987) Lambert& Lambert (1987) reported that approximately 110 millionpeople within the United States are presently afflicatedwith one or more chronic illnesses Of the persons affected,nearly 32 4 million are significantly limited m their dailyactivities as a result of their disease (Lubkin 1986) Thepurpose of this paper is to present a psychosocial typologyof illness and to discuss the time phasing of illness, toprovide a comprehensive view of chronic illness Familysystems theory and the family life-cycle perspective areused as frameworks to study how families adapt to chronicillness m order to improve nursing care Wright & Leahy(1984) stated that nurses can assist families m adapting tochronic illness and can provide essential support to thefamily system

Miller (1992) defined chronic illness as a permanentlyaltered health state, caused by a non-reversible pathologi-cal condition, which leaves residual disability whichcannot be corrected by a simple surgical procedure orcured by a short course of medical therapy Althoughchronic illness has a profound effect upon the individual,an immense responsibility is simultaneously imposed

Correspondence Nancy Newby 217 Whispenng Oaks Dnve BethaltoIllinois 62010 USA

upon the family (Shaw & Halliday 1992) Recent changesm the financing of health care have resulted m an escal-ation of reliance on families for long-term care In manyinstances, families assume the role of care provider forextended periods of the family life-cycle The family unitin our modem society must be d5mamic and evolutionary,to maintain stability and to manage the stresses of bothnormal transition phases and crises which are out of theordinary, such as chronic illness

Family responses to chronic illness vary according tothe age and the developmental stage of the ill individual,the strength and coping mechanisms of family, and thefamily life-cycle stage To place the unfolding of chronicillness into a developmental context, it is crucial to exam-ine the intertwining of three evolutionary threads the ill-ness, the individual, and the family life-cycle (RoUand1987)

PSYCHOSOCIAL TYPOLOGY OF CHRONICILLNESS

It IS important to link the client's and the family's psycho-social dimensions uito the chronic illness typology Thisscheme is very beneficial for nurses because it helps todefine and classify the illness and to clarify the relation-ship between the illness and family life The tj^ology con-ceptualizes broad distinctions of onset, course, outcomeexpected, and the degree of mcapacitation expenenced by

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Chronic illness and family life-cycle

the individual who is chronically Ul The tjrpology alsoidentifies related family stresses (see Figure 1)

Onset

Illnesses c£in be divided into those which have an acuteonset, such as a stroke or myocardial infarction, and thosewith a gradual onset, such as arthritis or Alzheimer's dis-ease Diseases with a gradual onset allow families sometime for ad)ustnient to the illness and time for family adap-tation Significant alteration of roles within the family maybe necessary to compensate for the ill member Illnesseswhich strike quickly place the entire family into animmediate crisis, with major readjustments compressedinto a very short time frame

Course

The course of chronic illness is essentially progressive,constant, or episodic A progressive disease, such asAlzheimer's disease, is one that is continuously sympto-matic and progressive Farmly members are faced with asymptomatic family member, whose condition is steadilyworsening They are challenged constantly to adapt rolesand reorganize family structures to care for the ill member

A constant-course illness is one in which the coursestabilizes after an lmtial crisis event, such as a stroke Afterthe initial period of crisis and adjustment, families canstabilize the care for the chronically ill member

The episodic or relapsing course is one which alternatesstable periods of varying length with tunes of acute exacer-bations or flare-up Illnesses such as asthma or ulcerative

colitis are examples of episodic diseases which reqmrefamilies to change roles back and forth, depending on thecurrent health status of the ill member The uncertaintyand frequent role changes add tremendous stress to thefamily unit

Outcome expected

The extent to which a chronic illness may cause death andthe degree to which it may shorten one's life span arecrucial features distinguishing illnesses

At one end of the spectrum are metastatic cancer orsevere cardiomyopathy which pose an immediate threatto life These types of diseases create an undercurrent ofanticipatory grief and separation, and a sense of impendingdoom which affect all phases of family adaptation

At the opposite end of the continuum are chronic con-ditions which normally do not threaten one's life or typi-cally shorten hfespan, such as blindness or migrmneheadaches However, family adaptation in the non-lifethreatening illnesses must focus on long-term adjustmentsand stable, permanent realignment of roles

Incapacitation

Incapacitation refers to an impairment of functioning dueto a defect or severe disability IncapacitaUon can resultfrom impaired cognition, movement, or energy level, orfrom physical deformities or other medical causes ofstigmas

The type and severity of incapacitation is a very sig-nificant factor m determining the stress experienced by

Figure 1 Chronic diseasetypology along illness timelme

ONSET

• acute• gradual

COURSE

• progressive• constant> episodic

OUTCOME INCAPACITATION

• life threatening• chronic non-

life threatening

• mild' severe' multi-system

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families For example, the combined physical and cog-nitive effects of a stroke can stress the family more thanan injury or illness which affects only the person'senergy production while allowing retention of cognitivefacilities

Assessing the four attributes of a chrome illness (onset,course, outcome, and incapacitation) is essential fornurses, in order to classify the chronic illness correctly, toidentify the family stressors involved, and to develop nurs-ing interventions for family care

The illness tune line

Rolland (1989) described the natural history of chronicillness within three time phases the crisis, chronic, andterminal phases The crisis phase is lmtiated with firstsymptom onset and extends through diagnosis This phasecreates high stress for families who are shocked and ang-ered by the sudden illness, and who are unprepared forthe role changes and family adjustments required

The chronic phase is the timespan from mitial diagnosisthrough treatment and readjustment The chronic phaserequires prolonged adjustments and the establishment ofa level of family normality to deal with the illness Theattempt by the family to maintain a semblance of normallife under the abnormal conditions of chrome illness is akey task for the entire family

The final, terminal phase occurs when death becomesapparent and family grieving begins This phase is markedby separation, death, gnef, and resolution of mourning

The three time phases illuminate critical transitionpoints m the natural developmental phases of an illnessThe interaction of the time phases and the typology ofillness, provides a basis for nursing assessment and aframework to relate chronic disease with psychosocial anddevelopmental tasks

FAMILY SYSTEMS THEORY

The systems approach to the study of the family is basedupon the theory derived from physics and biology byBertalanffy (1968) A system is composed of a set of inter-active elements, and yet each system is distmet from theenvironment in which it exists An open system exehangesenergy and matter with the environment to evolve towardgreater order and complexity This concept of negentropycan be adapted and applied to the family

Rogers (1983) viewed the family as an 'irreducible, four-dimensional negentropic energy field The family isviewed as an irreducible whole that is not understood byknowledge of individual members' From this theoreticalframework, the family is considered to be ui a state ofchange which is contmuous and innovative Familycharacteristics are manifestations of the constant inter-action of family with the environment A theoretical

approach relevant to health care must permit the study ofthe dynamic individual, the dynamic family imit, and theirmter-relatedness (Whall & Fawcett 1991)

Clements & Roberts (1983) defined a family as a socialsystem comprised of two or more persons who co-existwithm the context of some expectations of reciprocalaffection, mutual responsibility, and temporal durationGillis et al (1989) offered a broader view of family thatincludes a three-generational group of individuals havingclose emotional bonds, who meet affectional, socio-economic, and socialization needs of one another and ofthe family system

Wright & Leahy (1987) defined family health as adynamic, relative state of well-being Five dimensions, thebiological, psychological, sociological, spiritual and cul-tural, all combine into a holistic system One measure offamily health is the ability of the family to organize andrally in the face of challenge When the family's resourcesare insufficient to meet the challenge, family stress occurs,and the family needs to seek outside help

The family adaptation model, developed by Riehl & Roy(1980) views the family as an adaptive system with inputs,internal control and feedback processes, and output Inthis adaptation model, the focus of nursing is a concernfor the family as a total unit on a health-illness continuum,with assessments and mterventions directed toward help-mg patient and family to adapt Families of chronicallyill people incur many biological, psychological, andsociological losses, and there are no clear-cut norms ofbehaviour for anyone involved (Craig & Edwards 1983)Adaptation is the ultimate family nursmg goal m dealingwith chronic illness (Pollock 1985)

FAMILY LIFE-CYCLE PERSPECTIVE

The development of a life-cycle perspective originatedwith the work of Enkson (1950) and was further definedby Duvall (1977) Duvall conceptualized the family life-cycle according to different transitional stages related tothe coming and going of members marriage, birth andraising of children, launching of children, retirement,and death

When a family member is diagnosed as having a chronicillness. It may be helpful to simultaneously study the inter-action of the individual and family A central concept isthat of the life-cycle A cycle suggests an underlymg orderof the life course whereby individual, family, or illnessuniqueness occurs withm an unfolding time sequence

Illness, individual, and family development have incommon the notion of eras marked by constant changes inbuilding and mamtainmg functions through transitionalperiods of development Transition periods are potentiallythe most vulnerable because previous mdividued, family,and illness life structures are reappraised m light of newdevelopmental tasks

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Chronic illness and family life-cycle

Cicirelli (1985) stated that the family is considered asthe motion of a three- or four-generational system as itmoves through time Families incorporate new membersonly by birth, adoption, or mamage, and members canleave only by death Each family member has roles andfunctions, but the mam value m families is m the support-ive and nurturmg relationships (Woods ef al 1989)

As shown m Figure 2, the individual who requires careIS the centre of the family system The family, whichincludes nuclear and extended members, surrounds theindividual and provides both support and structure Theindividual life-cycle takes place withm the fanuly life-cycle, and it IS this mterconnectedness that is the pnmarycontext of human development The family life-cycle isenclosed within and closely connected to its communityThe stability and health of the community may affect thefunctioning of the family system sigmficantly Sirmlarly,the society in which the community exists may affect thesocial, cultural, political, economic, and religious statusof each mdividual and each family unit The health andnormal funetionmg of each system level is, to some degree,dependent on the health of the other levels

Family stresses, which are likely to occur around thehfe-cyele transition points, often result m disruption ofthe life-cycle and increased stress on the family (Walsh1978) Carter (1978) outlmed family stress and the flowof anxiety m a family as both vertical and honzontalstressors on a time lme The vertical flow m a systemincludes patterns of relating and functioning transmitteddown the generations of a family It mcludes all of thefamily attitudes, expectations, and labels, and the taboosthe children learn Systems-onented researchers haveemphasized that a family's present response cannot be

adequately comprehended apart from its history (Bowen1978)

The honzontal flow in the system mcludes anxiety pro-duced by stresses on the family moving through timeThese mclude the developmental and transitional issueswhich normally occur in time However, this also maymclude unpredictable, out of the ordinary life events, suchas chronic illness

Carter & McGoldnck (1989 p 8) suggested that

The degree of anxiety engendered hy the stress on the verticaland the horizontal axes at the pomts where they converge is thekey determinant of how well the family wiU manage its trans-itions through life Although all normative change is to somedegree stressful, it has been observed that when the horizontal(developmental) stress intersects with a vertical (transgener-ational) stress, there is a quantum leap m anxiety within thefamily system

INTERFACE OF ILLNESS, THE INDIVIDUALAND THE FAMILY SYSTEM AND LIFE-CYCLE

The concept of centripetal versus centrifugal family phasesin the family life-cycle is particularly useful m examiningthe integration of family, individual, and illness develop-ment (Beavers 1982) This eoncept portrays a three-generational family system osciUaUng through timebetween periods of family closeness (centripetal) and per-iods of family distancing (eentrifugal phases) Literally,'centripetal' and 'centnfugal' describe a tendency to movetowards and away from the centre In life-cycle terms, theyconnote a fit between developmental tasks and the relative

Figure 2 Life-cycle stressorsFrom Carter B &McGoldrickM The ChangingFamily Life Cycle 1989, AUyn& Bacon, Boston Reprinted bypermission

FAMILY

COMMUNITY

SOCIETY

HORIZONTALSTRESSORS

• developmental• transitional• unprechctat>le &

non-normative(chronic illness)

VERTICAL STRESSORS

i generationalattitudinalexpectationstaboosstigmas

Time

Centnfugalforces

Centnpetalforces

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need for internally directed, mdividual and family energyto accomplish those tasks

Chronic disease exerts a centnpetal pull on the familysystem The occurrence of chronic illness m a family setsin motion for that family a centnpetal process of sociahz-ation to the illness (Beavers & Voeller 1983) The symp-toms, role changes, and uncertamty associated with theillness all serve to refocus the family inwardly If the onsetof chronic illness coincides with a centnfugal penod forthe family, it can alter a family's natural momentumDisease onset that coincides with a centnfugal penod inthe family life-eyele may result m a prolongation of theperiod The inward pull of the illness may also eomeidewith a developmental phase of life-eyele with resultingincreases in family stress

When chronic illness is analysed through the lens of thetypology and time phases of illness, it is apparent that theamounts of centripetal and centnfugal pull vary greatlyThis variability has important effects on the family life-cycle, independent of the family dynamics

The tendency for a chronic illness to interact centnp-etally with a family increases as the risk of incapacitationor death mcreases Progressive diseases over long timephases are inherently more centnpetal m their effect onfamily stress than are constant-course illnesses Chromeillnesses occurring at unusual phases of the life-cycle tendto be more developmentally disruptive (Herz 1980)Levmson (1978) found that the timing in the life-cycle ofan unexpected event, such as a chronic illness, will shapethe family's adaptation and the event's lnfiuence on fanulydevelopment

In the face of chronic illnesses, the goal for the familyIS to deal with the developmental demands of the illnesswhile dealing simultaneously with then- individual andfamily system development through the life-cycle

CONCLUSIONS

This paper has presented a conceptual framework for ana-lysing the interaction of chronic illness with family andindividual life-cycles The typology and tune phase analy-ses provide a framework to generate and test hypothesesabout the relationships of different components of familyfunctioning and different phases of illness (Wnght &Leahy 1987)

Knowledge concermng life-eyele stressors is essentialfor nurses, in order to delineate the relationships of thevertical and horizontal stressors and the centnpetal andcentrifugal forces which affect both the individual and thefamily system

Used in conjunction with a comprehensive fsmiily sys-tems theory, the life-cycle perspective can provide atheoretical framework for both nursing research andpractice

References

Beavers W R (1982) Healthy, midrange and severely dysfunctional families In Normal Farmly Processes (Walsh F ed),Guilford Press, New York, pp 19-45

Beavers WR & Voeller MM (1983) Family models companngand contrasting the Olson circumplex model with the Beaverssystem model Family process 22, 85-98

Bertalanffy L V (1968) General Systems Theory George BraziUerNew York

Bowen M (1978) Family Therapy m Clinical Practice Aronson,New York

Carter E A (1978) The transgenerational scripts and nuclearfamily stress theory and clinical implications In GeorgetownFamily Symposium, 3 (Sager R R ed) Georgetown University,Washmgton DC

CarterB &McGoldnckM [1989] The Changing Family Life CycleAUyn and Bacon, Boston

Cicirelli VG (1985) Sibling relationships throughout the lifecycle In The Handbook of Family Psychology and Therapy(L'Abate L ed), Dorsey Press, Homewood, Illinois

Clements IW & Roberts FB [1983] Family Health A TheoreticalApproach to Nursing Care John Wiley, New York

Craig H M & Edwards J E (1983) Adaptation m chrome illnessan eclectic model for nurses Journal of Advanced Nursing 8,397-404

Duvall E M (1977) Mamage and Family Development 5th ednJ B Lippmcott, Philadelphia

Enkson E (1950) Childhood and Society Norton, New YorkGiUis C L , Highley B L , Roberts B M & Martinson I M (1989)

Toward a Science of Family Nursing Addison-Wesley, MenloPark, California

Herz F (1980) The impact of death and senous illness on thefamily life cycle In The Family Life Cycle A Framework forFamily Therapy (Carter E A & McGoldnck M eds) GardnerP*ress, New York

Lambert C E & Lambert V A (1987) Psychosocial impacts createdby chronic illness Nursing Clinics of North Amenca 22(3),527-533

Larkm J (1987) Factors influencing one's ability to adapt to chromeillness Nursmg Climes of North Amenca 22(3), 535-543

Levmson D [1978] The Seasons of a Man's Life Knopf, New YorkLubkin I (1986) Chronic Illness Impact and Interventions Jones

and Bartlett, BostonMiller JF (1992) Coping with Chronic Illness Overcoming

Powerlessness 2nd edn F A Davis, PhiladelphiaPollocks (1985) Human responses to chronic illness physiological

and psychosocial adaptation Nursing Research 35(2), 90-95Riehl J P & Roy S C (1980) Conceptual Models for Nursing

Practice Appleton Century Crofts, Norwalk, ConnecticutRogers M E (1983) Science of unitary human being a paradigm

for nursmg In Family Health A Theoretical Approach toNursmg Care (Clements IW & Roberts F C eds), John Wiley,New York, pp 219-228

Rolland J S (1987) Chronic illness and the family an overviewIn Families and Chronic Illness (Wnght L M & Leahey M eds),Spnnghouse Corporation, Spnnghouse, Pennsylvania

Rolland J S (1989) Chrome illness and the family hfe cycle InThe Changmg Family Life Cycle (Carter B & McGoldnck Meds), Allyn and Bacon, Boston, pp 433-454

790 © 1996 BlackweU Science Ltd, Journal of Advanced Nursing, 23, 786-791

Chronic illness and family life-cycle

ShawMC &HalIidayPH (1992) The family, crisis and chrome Woods N F , Yates, B C & Pnmomo J (1989) Supporting femihesillness an evoluUonary model Journal of Advanced Nursing durmg chronic illness Image Journal of Nursing Scholarship17, 537-543 21, 46-50

Walsh F (1987) Concurrent grandparent death and the birth of a Wnght L M & Leahy M (1984) Nurses and Families A Guide tosehizophrenie offspnng an intriguing finding Family Process Assessment and Intervention F A Davis, Philadelphia

17, 457-463 Wright L M & Leahy M (1987) Families and Chronic IllnessWhall A L & Faweett U (1991) Family Theory Development m Spnnghouse Corporation, Spnnghouse, Pennsylvania

Nursing State of the Science and Art FA Davis, Philadelphia

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