conceptualization of adaptation process to illness by pwas

3
Conceptualization of Adaptation Process to Illness by PWAs By José K. Côté, M.Sc.inf. AIDS constitutes a problem of ex- ceptional proportions for interna- tional public health. All of the continents have now been affected by the HIV epidemic. Statistics published by the World Health Organization (WHO) are witness to this effect. Presently, there is no curative etiopatho- genic treatment for PWAs. Undeniably, this disease is considered fatal since a ma- jority of the affected patients die. The cur- rent data confirm that on the average, after being affected, patients die within one to three years.1 Given the incurability of the disease, it seems essential to promote the well-being of PWAs at all of the evolutionary stages of the disease. This article will conceptualize the adaptation process of PWAs to the disease. It is plausible to believe that knowledge of the disease process should allow professionals to better understand the course of adaptation of PWAs, and as a result, to be able to intervene more effectively. Losses Due to AIDS For PWAs, this disease brings about losses of a biopsychosocial nature. Laza- rus and Folkman2 explain that the notion of a loss corresponds to the presence of a prejudice, a damage such as physical in- capacity, diminished self-esteem, and de- creased social relationships. Bryant,3 Buckingham and Rehm,4 Clark, Curley, Hugues, and James,5 Flaskerud,6 and Ryan7 in their clinical observations of PWAs remark that various losses are attributed to this syndrome. Losses of Physical Nature The serious symptoms associated with AIDS could inflict permanent or intermit- tent losses of some body functions3 78 thus perturbing the person's autonomy.' On one hand this creates a state of depen- dence which leads PWAs to seek the ser- vices of other individuals in order to meet the needs of daily living.4""" On the other hand, the tiredness, and the amount of energy spent in taking precautions to avoid spreading the virus severely restricts the sexual life of the PWAs.4'7 Losses of Psychological Nature According to several clinical observa- tions, the elements inherent in the per- sonality of PWAs are profoundly affected." 14 Clinically PWAs feel stigma- tized as soon as the diagnosis is made. They may experience guilt feelings to- wards their social role and their lifestyle which indirectly contributed to their dis- ease. They see themselves as useless be- cause they are unable to work and are dependent on others. Dilley, Shelp, and Batki15 believe that these factors play a role in the low self-esteem observed in PWAs. In fact, Donlou, Wolcott, and Gottlieb's study16 conducted with homosexuals and bisexuals with AIDS reveals that one- third of this population, as a result of the disease, suffered a considerable decrease in their self-esteem. According to Menen- berg 17 and Ryan 7 the self-image, that is, the personal perception of individual characteristics, one's abilities, one's rela- tionships with others and the environ- ment as such, are all perturbed with the manifestation of AIDS. It also has been reported that PWAs see their self-image modified considerably. This is not only due to the marked weight loss but also to cancerous growth known as Kaposi's sarcoma.41214 PWAs infect- ed with this cancer consider the lesions grotesque and unacceptable. According to Ryan7 PWAs have more difficulty ac- cepting changes in corporal image com- pared to other biological changes. These visible signs increase the fear of being stigmatized. Finally, PWAs also suffer from the loss of their daily activities, which are second- ary to their multiple hospitalisations.11-18 Rivin, Monroe, Hubschuman, and Thomas's study1* conducted with 1065 PWAs shows that among 86 percent of those who survived their first hospitaliza- tion, 46 percent spent one-third of their time in a hospital and 32 percent spend half of their life in a hospital center. Losses of Social Nature This degenerating and debilitating dis- ease more or less halts work-related activi- ties in a short period. Following the assault of the disease, certain activities of sociocultural nature such as travelling, go- ing to theatre, church, community work, sporting events, and social gatherings could also be halted on an intermittent or permanent basis.378 Inability to work also means loss of rev- enue, thus forcing PWAs to depend finan- cially on social services.6 In addition, this disease forces PWAs to depend on health services such as the hospital and its per- sonnel, domicile health care services, and medications.378 The people close to PWAs have ambivelant feelings toward them.6 They are afraid of being judged as having contracted the disease. According to their principles and values, the people close to them could refuse to have any relation- ships with the sick.62021 Also, the loss of people close to them is experienced fol- 204

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Page 1: Conceptualization of Adaptation Process to Illness by PWAs

Conceptualization ofAdaptation Process to

Illness by PWAsBy José K. Côté, M.Sc.inf.

AIDS constitutes a problem of ex-ceptional proportions for interna-tional public health. All of the

continents have now been affected by theHIV epidemic. Statistics published by theWorld Health Organization (WHO) arewitness to this effect.Presently, there is no curative etiopatho-

genic treatment for PWAs. Undeniably,this disease is considered fatal since a ma-

jority of the affected patients die. The cur-rent data confirm that on the average,after being affected, patients die withinone to three years.1Given the incurability of the disease, it

seems essential to promote the well-beingof PWAs at all of the evolutionary stages ofthe disease. This article will conceptualizethe adaptation process of PWAs to thedisease. It is plausible to believe thatknowledge of the disease process shouldallow professionals to better understandthe course of adaptation of PWAs, andas a result, to be able to intervenemore effectively.

Losses Due to AIDSFor PWAs, this disease brings about

losses of a biopsychosocial nature. Laza-rus and Folkman2 explain that the notionof a loss corresponds to the presence ofa prejudice, a damage such as physical in-capacity, diminished self-esteem, and de-creased social relationships. Bryant,3Buckingham and Rehm,4 Clark, Curley,Hugues, and James,5 Flaskerud,6 andRyan7 in their clinical observations ofPWAs remark that various losses areattributed to this syndrome.

Losses of Physical NatureThe serious symptoms associated with

AIDS could inflict permanent or intermit-tent losses of some body functions3 7 8 thusperturbing the person's autonomy.' Onone hand this creates a state of depen-dence which leads PWAs to seek the ser-vices of other individuals in order to meetthe needs of daily living.4""" On the otherhand, the tiredness, and the amount ofenergy spent in taking precautions toavoid spreading the virus severelyrestricts the sexual life of the PWAs.4'7

Losses of Psychological NatureAccording to several clinical observa-

tions, the elements inherent in the per-sonality of PWAs are profoundlyaffected." 14 Clinically PWAs feel stigma-tized as soon as the diagnosis is made.They may experience guilt feelings to-wards their social role and their lifestylewhich indirectly contributed to their dis-ease. They see themselves as useless be-cause they are unable to work and aredependent on others. Dilley, Shelp, andBatki15 believe that these factors play a rolein the low self-esteem observed in PWAs.In fact, Donlou, Wolcott, and Gottlieb'sstudy16 conducted with homosexuals andbisexuals with AIDS reveals that one-third of this population, as a result of thedisease, suffered a considerable decreasein their self-esteem. According to Menen-berg 17 and Ryan 7 the self-image, that is,the personal perception of individualcharacteristics, one's abilities, one's rela-tionships with others and the environ-ment as such, are all perturbed with themanifestation of AIDS.It also has been reported that PWAs see

their self-image modified considerably.This is not only due to the marked weight

loss but also to cancerous growth knownas Kaposi's sarcoma.41214 PWAs infect-ed with this cancer consider the lesionsgrotesque and unacceptable. Accordingto Ryan7 PWAs have more difficulty ac-

cepting changes in corporal image com-pared to other biological changes. Thesevisible signs increase the fear of beingstigmatized.Finally, PWAs also suffer from the loss

of their daily activities, which are second-ary to their multiple hospitalisations.11-18Rivin, Monroe, Hubschuman, andThomas's study1* conducted with 1065PWAs shows that among 86 percent ofthose who survived their first hospitaliza-tion, 46 percent spent one-third of theirtime in a hospital and 32 percent spendhalf of their life in a hospital center.

Losses of Social NatureThis degenerating and debilitating dis-

ease more or less halts work-related activi-ties in a short period. Following theassault of the disease, certain activities ofsociocultural nature such as travelling, go-ing to theatre, church, community work,sporting events, and social gatheringscould also be halted on an intermittent orpermanent basis.378Inability to work also means loss of rev-

enue, thus forcing PWAs to depend finan-cially on social services.6 In addition, thisdisease forces PWAs to depend on healthservices such as the hospital and its per-sonnel, domicile health care services, andmedications.378 The people close to PWAshave ambivelant feelings toward them.6They are afraid of being judged as havingcontracted the disease. According to theirprinciples and values, the people close tothem could refuse to have any relation-ships with the sick.62021 Also, the loss ofpeople close to them is experienced fol-

204

Page 2: Conceptualization of Adaptation Process to Illness by PWAs

AIDS PATIENT CARE/AUGUST 1991 205

Adaptation Process to Illness of Persons with AIDS

Losses ofBiopsychosocialNature

PersonalJudgementon the Seventyof the Losses

PersonalJudgement onthe Availabilityof AdaptiveStrategies

I ÍAdaptive StrategyEffective

1Adaptive StrategyIneffective

t PSYCHOLOGICAL i PSYCHOLOGICALI

Estimation of New InformationEvaluation of Perception and InitialAdaptive Strategies

lowing the PWAs' repeated hospitaliza-tions. In these circumstances, PWAs mustlive in strange hospital surroundings.This fatal illness also imposes changes inroles and family relationships.36813

Conceptual FrameworkCraig and Edwards22 consider that the

losses caused by sickness perturb thephysical, psychological, and social equi-librium of PWAs and call for a process ofadaptation. These authors propose an ex-plicative framework of the course taken byindividuals toward an adaptation to theillness. Craig and Edwards22 in their con-ceptual framework were inspired by theworks of Lazarus2324 and their collabora-tors2526 pertaining to stress and copingthus leading them to elaborate their con-ceptual framework. The central concept oftheir framework is the cognitive processand its preponderant influence on theways people adapt to dealing with stress.This cognitive process consists of per-

sonal evaluation of the significance of theevent. According to these authors, threetypes of evaluation are presented in an ad-aptation process to the disease: primarycognitive appreciation that concerns theevaluation of the losses incurred, second-ary cognitive appreciation that calls for thejudgement of adaptive strategies avail-able, and reappreciation that calls on theestimation of new information in additionto the evaluation of perception and initialadaptive strategies. The process of ap-preciation and reappreciation is cyclicand continual. With this process a

person makes evaluative judgements allalong the way toward achieving a level ofadaptation.

Primary Cognitive AppreciationThis first appreciation involves a per-

sonal judgement on the severity of thelosses suffered. Certain personal and situ-ational factors exert an influence on theways the situation could be resolved. Infact, the loss of personal autonomy maysignify the end of work-related activitiesand may be seen very negatively. Forothers, work is a source of stress andfrustration. The end of these activitiesmay be welcome and may be seenas a relief.27

Secondary Cognitive AppreciationThrough the secondary cognitive appre-

ciation, a person judges the availability ofadaptive strategies. Lazarus and Folkman2

define the adaptive strategies in terms ofefforts deployed by the individual for reg-ulating specific internal and external de-mands, which are evaluated as trying orexceeding the individual's resources. Ac-cording to these authors, when a situationis judged stressful, these adaptive strate-gies fulfill two major functions. The firstfunction regroups the strategies orientedtoward the problem. In this, efforts arecentered toward a definition of a problem,research, evaluation, selection of solu-tions, and finally, action. The secondfunction consists of strategies of emotion-al regulation; those that permit the personto control distress emotions.Craig and Edwards22 support that the

personal evaluation of the severity of loss-es experienced is a critical determinant ofadaptive strategies which the person willuse. The strategies centered on the emo-tions are used more in regard to episodesof stress produced by the health problemssince these situations are evaluated by theperson as being nonmodifiable conditionsbefore being accepted. While the utiliza-tion of strategies oriented toward the

problem is associated with stressfulevents experienced at work the events arejudged as having a potential for change bythe action.It is important to underline that the in-

dividuals' recourse is not only the strate-gies centered on the emotions or thestrategies oriented towards the problemto face a situation judged stressful. In fact,Folkman and Lazarus28 reveal that strate-gies centered on the emotions and thoseoriented toward the problem are frequent-ly used simultaneously when a situationis judged stressful.The adaptive strategies used to deal

with a stressful situation affect the biopsy-chosocial integrity of the person. If theadaptive strategy is effective, the personbelieves that an action, on his part, has a

positive effect on the situation. Conse-quently, the sentiment of increasing con-trol and psychological integrity is alsomaintained.29 Inversely, a person coulduse the adaptive strategies which do notpermit him to master the situation. Theunsuccessful attempts of these tentativestrategies may generate stress and may

Page 3: Conceptualization of Adaptation Process to Illness by PWAs

206 AIDS PATIENT CARE/AUGUST 1991

give rise to a sentiment of powerlessnessand loss of control thus frequently drivinga person into a state of psychological dis-equilibrium.29Following the AIDS diagnosis, PWAs

are naturally inclined to make use ofstrategies of denial. Denial is one strategythat is frequently employed and is veryuseful.121718213° It permits the PWA tomobi-lize and regroup his strength. Without thedenial strategy PWAs would be easilycrushed under the weight of events.1431On the other hand, the abusive use of de-nial strategy by PWAs may be harmful totheir adaptation process to the illness17and interfere with their proposed ther-apy.8

Complex EvaluationOn the advice of Cohen and Lazarus 25

the comprehensive judgement on the val-ue of an adaptive strategy must be fol-lowed with prudence and vigilance.Cohen and Lazarus25 support that thisvery complex evaluation depends on sev-eral factors, namely context, time, values,and perspectives. In fact, strategies suchas denial and avoidance could be very effi-cient or totally harmful depending on thelength and the moment of their utiliza-tion. These strategies were associatedwith a diminution ofmortality rate follow-ing coronary surgery32 and were equallyassociated with a considerable diminutionof the assiduity of medical treatment ayear after severely compromising the stateof health of these ill people.33Counter to the authors who put accent

on the stages of the adaptation process tothe disease, Craig and Edwards22 proposean explicative framework of psychosocialadaptation to the disease. In this frame-work, central concept is the cognitiveprocess. According to these authors,along the way to attaining the level of ad-aptation, a person evaluates judgementsconcerning the severity of the losses expe-rienced, and the adaptive strategies used.From its fluid dynamism and its practicalimpact, the Craig and Edwards'22 modelseems to correspond more to the realityand the clinical experience of the author.One can observe over a long period a pro-file of adaptive strategies, in which princi-pal tendencies emerge, and lean more orless toward the adaptive process to thedisease as a result of progressive cyclicprocess.22 The losses caused by the disease

present themselves in a subsequent fash-ion leashing an adaptation process whichtranslates into the personal evaluation ofthe severity of these new losses and a newestimation of adaptive strategies availa-ble.A professional acts as a facilitator in the

process of adaptation to the disease byPWAs. He/She helps the PWA in the real-ization of the primary cognitive apprecia-tion realistic of the situation. To achievethis end, he/she encourages the PWA toverbalize preoccupations and sentimentsin regard to the condition. He/She givespertinent and adequate information con-cerning the condition and the communityresources available. It is also necessarythat the professional helps in the develop-ment and utilization of effective adapta-tive strategies while being sensitive to thediverse reaction of PWAs. The therapeuticvalue of denial must be evaluated as itfunctions at the time it is used. D

References

1. Société royale du Canada. Le SIDA: L'état dela question au pays. Rapport de synthèse et recom-mandations. Ottawa: Imprimerie coopérativeHarpell Montréal, 1988.2. Lazarus, R.S., Folkman, S. Stress, Appraisaland Coping. New York: Springer, 1984.3. Bryant, J.K. Home care of the client withAIDS. / Community Health Nurse 3(2):69-74,1986.4. Buckingham, S.L., Rehm, S.J. AIDS andwomen at risk. Health and Social Work 12(1):5-11,1987.5. Clark, C, Curley, A., Hugues, A., James, R.Hospice care: A model for caring for the personwith AIDS. Nursing Clinics of North America23(4):851-862, 1988.6. Flaskerud, J.H. Psychosocial aspects. Journalof Psychosocial Nursing, 25:9-16, 1987.7. Ryan, L.J. AIDS: A threat to physical andpsychological integrity. Topics in Clinical Nursing719-25, 1984.8. Feinblum, S. Pinning down the psychosocialdimensions of AIDS. Nursing Health Care7(5):255-257, 1986.9. Schietinger, H. AIDS beyond the hospital 1.A home care plan for AIDS. Amer J Nursing86(9): 1021-1028, 1986.10. Salyer, J., Waters, H., Yow, P. AIDS: Holistichome care. Home Health Care Nurse 5(2):10-21,1987.11. Evans, K.M. The female AIDS patient.Health Care for Women International 8:1-7, 1987.12. Kennedy, M. AIDS: Coping with the fear.Nursing 17(4):44-46, 1987.13. Murphy, P. Pastoral care and persons withAIDS. Amer J Hospice Care 3(2):38-40, 1986.

14. Salisbury, D.M. AIDS psychosocial implica-tions. / Psychosocial Nursing 24(12):13-16, 1986.15. Dilley, J.W., Shelp, E.E., Batki, S.L. Psychi-atric and ethical issues in the care of patientswith AIDS. Psychosomatics 27(8):562-566, 1986.16. Donlou, J.N., Wolcott, D.L., Gottlieb, M.S.Psychosocial aspects of AIDS and AIDS-relatedcomplex: A pilot study. / Psychosocial Oncology3(2):39-55, 1985.17. Menenberg, S.R. Somatopsychology andAIDS victims. / Psychosocial Nursing and MentalHealth Services 25(5):18-22, »87.18. Schoen, K. Psychosocial aspects of hospicecare for AIDS patients. The American Journal ofHospice Care 3(2):32-34, 1986.19. Rivin, B.E., Monroe, J.M., Hubschuman,B.P., Thomas, P.A. AIDS outcome. A first fol-low-up letter. N Engl J Med 311:857, 1984.20. Fiske, M. Psycho-nursing care of AIDSvictims. Chart 83(5):6,U, 1986.21. Ross, M.W., Rosser, B.S. (1988). Psychologi-cal issues in AIDS—related syndromes. PatientEducation and Counseling 11:17-28.22. Craig, H.M, Edwards, JE. Adaptation inchronic illness: an eclectic model for nurses./ Advanced Nursing 8:397-404, 1983.23. Lazarus, R.S. Psychological Stress and theCoping Process. Toronto: McGraw-Hill, 1976.24. Lazarus, R.S. Patterns of Adjustment. New-York: McGraw-Hill, 1976.25. Cohen, F., Lazarus, R.S. Coping with thestresses of illness. In G.C. Stone, F. Cohen,N.E. Adler (Eds.), Health Psychology—A Hand-book. San Francisco: Jossey-Bass, 1979, pp.217-254.26. Cohen, F., Lazarus, R.S. Coping and adap-tation in health and illness. In D. Mechanic(Ed.), Handbook of Health, Health Care, and theHealth Professions. New York: Free Press, 1983,pp. 608-635.27. Johns, M.W., Dudley, H.A.F., Masterton,J.P. Psychosocial problems in surgery. Royal Col-lege of Surgeons of Edinburgh 18:91-102, 1973.28. Folkman, S., Lazarus, R.S. An analysis ofcoping in a middle-age community sample.Health and Social Behavior 21 (3):219-239, 1980.29. Seligman, N.E. Helplessness—On Depression,Development and Death. San Francisco: W.H.Freeman & Co, 1975.30. Rundell, J.R., Wise, M.G., Ursano, R.J.Three cases of AIDS-related psychiatric disor-ders. Amer J Psychiatry 143(6):777-778, 1986.31. Böhm, E. (1987). AIDS. Effects on psycho-therapy in New York City. / Psychosocial Nursing25(12):26-31, 1987.32. Hackett, T.P., Cassem, Wishnie, H.A. Thecoronary-care unit: An appraisal of its pyscho-logichazards. NEnglJMed279:1365-1370,1968.33. Croog, S.H., Shapiro, D.S., Levine, S. De-nial among male heart patient: An empiricalstudy. Psychosomatic Med 35:375-389, 1971.

Ms. Côté is professor, Faculty of Nursing,University of Montreal, Montreal, Quebec,Canada.

Reprints of this article are available in bulkquantity. For information and prices, write toor call: Karen Ballen, AIDS PATIENT CARE,1651 Third Avenue, New York, NY 10128,(212) 289-2300.