Self-concept and cancer in adults: Theoretical and methodological issues

Sot. .Sci. #Med. Vol. 31. No. 2. pp. 115-128, 1990 Printed in Great Britain. All rights reserved

Copyright

c

0277-9536.‘90 53.00 + 0.00 1990 Pergamon Press plc

SELF-CONCEPT AND CANCER IN ADULTS: THEORETICAL AND METHODOLOGICAL ISSUES BARBARA

CURBOW,* MARK SOMERFIELD, MARCIA LEGRO and JOHN SONNEGA Johns Hopkins University, Baltimore, MD 21205, U.S.A.

Abstract-Research and theory development on the self-concept have increased dramatically over the last decade. Investigators of the psychosocial aspects of cancer have utilized the self-concept as both an independent and dependent variable. This article discusses quantitative adult studies from the self-concept and cancer literature in terms of their correspondence with current conceptualizations of the self-concept in psychology. The wide gap between recent empirical work and self-concept theorizing is discussed and strategies for future investigations of the self-concept/cancer relationship are outlined. Kqv words-self-concept,

neoplasms, adult

INTRODUmON Not only does cancer cause physical

suffering and the loss of productive years across all segments of the lifespan [l, 21, it also is often associated with decrements in psychosocial functioning [3]. Researchers of the psychosocial aspects of cancer have responded to the compelling problems generated by the disease and there are growing bodies of work on the many facets of cancer’s consequences for psychological functioning. One emerging area of research explores the relationship between cancer and the self-concept. While self-concept has been viewed as a relevant variable in the study of chronic illness in general [4, 51. aspects of cancer (e.g. uncertainty regarding its etiology and course) and cancer treatment (e.g. the aggressiveness of many therapies) serve to make patients and survivors particularly vulnerable to changes in their self views. Mages and Mendelsohn [6] have argued, more specifically, that the physical damage resulting from the treatment of cancer may force changes in self-perception. Evidence of the growing recognition of the importance of self-related variables can be found in a recent review of self-concept and quality of life in cancer patients [7’J,discussions of the importance of self-esteem and body image for cancer patients [S], and notation of the role of disfigurement in the psychosocial functioning of patients with hematological malignancies [9]. Because the investigation of self-concept and other closely related variables is on the rise in cancer research, it is appropriate to characterize the extent to which the empirical research is linked to current theory. The purposes of this article are twofold: (a) to describe the methods and theoretical frameworks of recent work on the self-concept and cancer, and (b) to ascertain how well this research fits within current conceptualizations of the self-concept as found in psychological literature. It is not the goal of this paper to review the findings of studies on self-concept *Address correspondence to: Barbara Curbow. Health Psychology Program, Department of Environmental Health Sciences. Johns Hopkins University. 615 North Wolfe St, Baltimore. MD 21205, U.S.A.

and cancer. Such a task would be beyond the scope of this discussion. We begin our discussion with an overview of how the cancer and self-concept studies were selected. We then turn to a discussion of the following six issues: (a) the definition of self-concept; (b) self-concept as a dependent and independent variable; (c) unique and shared components of the self-concept; (d) multidimensional aspects of the self-concept; (e) the bidirectional influence of the self-concept; and (f) changes in the self-concept over time. SELECTION AND OVERVIEW THE STUDIES DESCRIBED

OF

Computer searches of Index Medicus and Ps_vchowere conducted for this paper. Both and Psychological Abstracts were searched using the keyword ‘neoplasms’ in combination with each of the following: ‘self-concept,’ ‘self-esteem, ’ ‘identity, ’ ‘self-image,’ and ‘self-perception.’ To reflect the rapid increase in theory and research on the self-concept during the past decade, each search covered the time period from 1978 to 1988. After reviewing the preliminary set of articles produced by the computer searches, it was evident that four distinct subgroups of studies existed: (a) quantitative adult, (b) qualitative adult, (c) quantitative pediatric, and (d) qualitative pediatric. Because the studies in these subgroups differed in their approaches, methods and target audiences, we limit this discussion to quantitative adult research. Additional articles were excluded because they did not contain self-related variables, or because they focused on siblings or caregivers of cancer patients, or on persons at high risk for getting cancer. In addition to the computer searches, a manual review of 22 major health psychology journals [IO] was completed. and a direct search was conducted for articles based on dissertation abstracts located by the computer searches. Forty-four quantitative studies on cancer and selfconcept emerged from the literature review. Five studies were described in two separate articles each; therefore, one report of each was excluded from the

logical Abstracts Index Medicus

115

BARBARA CLXBOW et al

116

review. An additional three studies were discarded because they did not contain self-related variables. The resultant 36 studies [I I-461 are described in Tables I and 2. Table 1 includes information on the sample (including number, gender. age, and type of cancer) and the time frame of the study. Table 2 presents information on whether the self variable is used as a dependent or independent variable, the predictor or outcome variables associated with self, and the self variable that was investigated. A DEFINITION OF THE SELF-COXEPT

In her recent review of the influence of cancer on self-concept, Foltz [7] adopted a definition of the term employed by Schain [47]. According to this definition, the self-concept is defined as the “sum total of all that a person feels about himself’herself.” Foltz then noted and summarized research on four subcomponents of the self-concept: body self, interpersonal self, achievement self, and identification self. While this definition appears plausible, and indeed it may be workable under some circumstances. there are two major issues that must be raised. First, the definition of self-concept is more closely akin to what the psychological literature would identify as a self-esteem. Self-esteem is the atfective component of the self-concept; it describes an attitude. feeling, or evaluation concerning the self [48]. Selfesteem may be used as a global term. as measured by standard instruments such as the Rosenberg Selfesteem Scale [49]. or it can be based upon feelings about components of the self (e.g. feelings about body-image following a mastectomy). In the Foltz review article, and elsewhere in the oncology self-concept and self-esteem are used literature. interchangeably. The second issue that must be raised concerns the implementation of Foltz’s definition vvhcn applied to the literature. In the Foltz review. the body self is broken into two areas: functional and body image. Keeping with her definition of the self-concept, the functional body self should include ferlings about how the self is functioning. Instead. the review cites studies that focus on actual levels of functioning such as activity levels. arm weakness. shoulder mobility, and ability to carry out household tasks. This inconsistency of definitions is apparent u hen she examines other self domains such as the interpersonal self, the sexual self. the achievement self. and the identification self. This apparent confusion regarding the definition and usage of terms such as self-concept and self-esteem is found in other studies in the oncology literature. For example, although we specified narrowly defined terms in our literature search. there was great variability in the aspects of self uncovered (see Table 2). The current climate of intense theorv generation about. and research activity on. the self-concept in the psychological literature allows for a more precise definition of the term. The self-concept is best vievved as a collection of self representattons. Self-esteem is a component of this group of representations. These representations vary in their structure and function and have been given a variety of labels (images, goals.

OYK2)(?6]

Hallal

cf crl. (1979) 1301

Lewis

rA

tThe

weighted

number

mean

from

indicatrs

was calcula1ed

in parentheses

illnesses other

(19X4) 14.5)

(441

1421

(19X5) (411

(I 987)

includes

Youssef

sample

and Weisman

(19114) (461

Worden

‘Total

Cl Cd. (1986)

wolcolt

et d

(1983) 143)

den Borne

Walson

Van

and Jan&Bulman

Timko

[40]

YI ol. (1984)

ef ul. (1985)

St&&erg

Taylor

et RI. (1981) [3X]

Spiegel

1391

CI rd. (1985) (371

Schain

rr ol. (19113) 1361

Revenson

(19X5) [W]

PI rd. (19X5) 1351

PI d.

Ramhoer

Pruyn

YI NI. (19X7) 1331

Penman

(19X4) I3 I]

(19X8) 1321

and Winefield

Neuling

and Anderson

(19X2) [2Y]

Lewis

MacDonald

L’r cd. (1983) [2X]

(19X4) [27)

IIan

I lohhll andWallisch

Burgess (19X7) [2SJ

and

Greer

(26%) (33%) (25%)

5&5Y 6&69

29-78

various

(3)

stir

fix

cancer

is withm

groups

included.

of persons. were

in the 1ex1.

lypes of cancer

&ala provided

many

11 = 39.5t or other

Sample

parcnthcscs.

El = both

males and

females;

IO days of diagnosis; hospitalization

within (7)

during

27 60

breast

various

IK F

IX

over

II7

B

M =42

3-6.

points,

P = females;

M = males.

al 2. 4, 6. I2 months

postdischarge

at 2 time

intrrvals

postdiagnosls

apart

entrance

1X months

after

(b)

into

postsurgery

postsurgery, months

I2- I5 months 6 9, and Y-12

Y- 12, and

II +

years (23%)

p&biopsy

a~ 4 months

interviews

sahgroups

month post-lransplant,

I

all had BMTs

months

postsurgery.

17-51

19-91

day

M = 27.9

(4)

4-7th

= 25.5 M = 8.9

M&I

M = 15.X

stage of treatment

postsurgery,

postsurgery,

pslsurgery.

16F

various

all had ostomics

months

months

months

indelerminant

l-20

l-60

543

IO M

21 M

M = 66

IOF

Hodgkins

breast

369 B

42 F

breast

breas1

23-8 I

Mcln = 53

breas1

M = 53.4 -

78 F

31-6X M = 52.Xt

diagnosis,

al O-3.

6-9.

poslsurgery

years (24%).

collected

67 F

I year after study

data

for

breast

M = 54.4

postreconslruclion

5X F

postdiagnosis

(51%)

years

(49%)

breast

2 months-X.5

5 years of diagnosis

< I year postreconslruclion

+

wi1hin

bet’ore diagnosis

majority

women

I + year

40-M)

63 F

(3)

Hodgkins

breast

various

43% -

57%

no surgery

6-10

studies at O-3. 3-6,

study contacted

(a) cross-sectional groups)

longitudinal

comparison

I and

3 months

poslsurgery

8 weeks postsurgery

3 months

2, 5, and

years (53%).

presurgery;

l-5

breast

days

postsurgery:

surgery;

audit

all terminal

wi1h chart

I5 weeks

postbiopsy

1I, and

3 months

+ years postdiagnosis

I day before

2-7

IO biopsy;

chemotherapy

prior

(cholecystechxny,

breast

reclal

not specified

-=zl-7

before

I day

3, 7.

postdiagnosis

surgery,

I2 months

before

postmasleclomy

no1 applicable

3 and

night

3, I year

M =4x

5&X3 M =6l

a-61+ M z49.11 -

(16%)

3&3Y

E 54.0

40-49

Mrln

I5 M

than cancer

how

(34%)

75+ 3&X2

(38%)

< 65 (28%) 65-74

(22) 17 F

105-

l23M

375 F

1715 F

58 F

210 M

27-65 M = 49.6

(23) 2lOF

M = 54.0

46 B

hreost

(16)

various

various

21 M

23.-80 M = 53.2

36 M

suspected

heallhy

(3)

21-79

M = 3X.2

(13) 30 F

35 F

2X~ 58

hU F

207 F 21X

I R-70

(31) 107 F various

breasl

(13) 61 F

34 M

breast

34-57 M = 47.5: -

24 F

z

R ?

w

8

WJ ‘p ;?

Cella

(1986)[16]

(361

Youssef

survival practice

IV

IV

tThc

marital

medical

adoption

lift

cvcnts stress, and

lack

in this study included

of supports,

the ti~llowing:

research

treatment

teams.

as a cimfcr

medical

conditions,

controls

patients

vs patient

fellow

patients

controls

transplant

(BSE)

(MRM)

age, social status, chronic

hy the respective

diagnosis

diet

state depression

of unproven

state anricty. compliimcc

controls

with

counseling

contact

biopsy,

and demographic

in the future)

mastectomy

reconstruction

psychosocial

only,

breast

locus of control,

of illness patients)

mastectomy

patient

vs kidney

postoperative therapy,

length

surgery

OC cancer

self-examination

patient

ot’ hrcast

time

functioning

lo have hccn developed

t&tors

status,

and demographic

and employment

psychosocial

various

of control,

a citation

[35]

IV

without

et cd. (1985)

Ramboer

lSctf-variahlcs

IV

IV

were assumed

social

IV

IV

depression

IV

BMT

preventive

therapy,

short-term group

DV

(free

control

radical

breast

in or out of treatment, in short-term

DV

cr rrl. (1985) (341

1271

BMT

DV

I’ruyn

(1984)

patients

invtdnerdbility

about

modified

support

or delayed

beliefs

vs donors

diagnosis,

DV

perceived

attributions.

DV

DV

DV

type of surgery:

DV

early

psychological

immediate, weekly

DV

controls

depression,

years since surgery

various

therapy,

age, rx.

(general

no surgery;

and adjuvant

cholccystectomy. faclorst

vs noncrisis

DV

,‘I II/. (I’~X3)/?X]

and Waltisch

support

disability

anxiety,

and healthy

controls

over life and health,

symptoms,

of a colostomy,

mastectomy

social

presence

surgery

healthy

waiting

list controls

variables

in the quantitative

since treatment

program,

status

program,

since diagnosis.

control

growth,

crisis (cancer)

personal

tumor

age. sex, time

level of crisis cancer,

patients,

time -

styles, demographic

reconstruction

of tumor

breast

training

knowledge

in a social

styles

maseclomy

persons

coping

or evacuation

vs late stage cancer;

vs delayed

early

unconscious coping

negative

scar characteristics

support,

immediate

cancer,

gender,

social

employed

Predictor/outcome

of the self, variables

types: chemotherapy

2. Description

treatment

Table

social support

or

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

DV

(IV)

(DV)

variable

independent

llano

Ilohl’oll

[ 141

(1987) (I21

CI N/. (1985)[19]

(261

[42]

1321

(1984) [a]

[44]

(1984)

Richardson

and Spiegel

Jcdtlal (1982)

Edwards

Bloom

Bisno and

and Weisman

(1984)

Worden

(461

r/ ul. (1986)

Wolcolt

CI (I/. (1987)

(1983) 1431

Watson

den Borne

(1984)

Van

and JanotT-Bulman

141)

Timko

1401

134

PI cl/. (1984)

YI ol. (1985)

Taylor

Steinberg

ef ol. (1981)

Spiegel

(1988)

[33]

[3X]

CI el. (1985)(37]

Schain

CI ol. (1983)

cr cl. (1987)

Revenson

and Winetield

Penman

and Anderson

Neuling

(l984)(3l]

MacDonald

(1979)

[29]

cf d.

Lewis

[JO]

(1982)

Lewis

(1982) 1241

and Lewis

Burgess (1987) [25]

and

[23]

Greer

(1982)

I]

Gottesman

Gerard

(1981) 122)

CI cl. (1984)(21]

Felton

Fiegenbaum

[ZO]

(1984)

and Craddick

PI ul. (1983)[18]

er a/. (1984) [ 17)

and Tress

Engelman

Dean

Clifford

et cl/. (1983)

[IS]

CI crl. (1980)[1

( 1982) [I 21

Cassileth

Bloom

Berkowitz

Study

Dependent

self-esteem

self-esteem

estimated

information

xll’rsttwn

self-erlccm

self-esteem

self-concept

self-regard

self-concept

self-concept

selfesteem

1965) 1491

(Rosenberg.

(Rosenberg,

(Rosenberg,

items.

group

weight

from

participation.

loss

physician

197X) 1901

Inventory.

weight,

k~ween

reported

locus

1966) [X9]

1958) 179))

1965) (491

(Schain.

loss of parent(s),

of diet

early

and adoption

Shostrom.

Scale (Janis.

Concerns)

195l)(Rl]

and

concerns

(Rosenberg,

ol’ the relationship

197X) ]‘JlI

and Schooler. (*I ol..

as a moderator

(I.um

(Pearlin

(Fitts.

from

Orientation 1965) 187)

(adapted (Personal

Janis-Field

of Current

1983) [SN] 1965)[87]

(Inventory (Fitts,

1965) [49]

1967) (861

(791)

dissatisfaction

global

(Jourdrd

(Kahn,

of mastectomy

1965) [87], self-esteem (Simmons,

(Fitts.

(Rosenberg,

Scale (Eagly,

results

1965) [49] of viewing JanissField

distress

(Rosenberg,

self-image

image

only

cathexis

1965) (491. body

1965) [49]

1965) [49]

1965) [49]

and individual

(Rosenberg,

(global

(Rosenberg,

1977) 1821, body

1965) 1491

(1958)

and aspects of

Janis

femininity,

Scale,

self and cancer

‘Me’,

CI rrl., 1972) [X4], feminine

self appraisal

self-esteem

self-concept

self-esteem

sclf~estcem

self-esteem

self-image

self-esteem

emotional

self-esteem

1977) INS]

(Berscheid

self-esteem

self-esteem

srigma

self-esteem

self-esteem

here)

(Polivy,

1955) 1831

self-concept Secord.

1957) [NO]

self and cure,

(Rosenberg.

self-discontent

self-esteem

between

PI al.,

1965) [49]

scar

Janis-Field

Self-variable*

to evaluate

(Rosenberg, ditTerential

image

from

of surgical

{adapted

impact

(Osgood

distance

body

body

semantic

self-esteem

cosmetic

self-concept

self-image

studies

social contacts.

adult

P

a m

c

?

5

= 00

Self-concept and cancer tasks, etc.). Their organization has been described as spaces [SO],a confederation [S!], or a type of system. According to Markus and Wurf [52], many recent models of the self-concept focus on the nature of the cognitive representations of the self. Not a!! of the self representations that create the self-concept are alike. Markus and Wurf cite several dimensions that characterize and differentiate self representations: importance, valence (i.e. positive or negative), time orientation (past, present, or future), actual or idea!, feared, and likely. For example, a cancer patient may have a self-concept that includes a representation of the self on a physical strength dimension. This physical strength component may be characterized for that person as important, negative, current, and feared. Perhaps the most apparent difference among self representations is their importance. Some representations are ‘core’ conceptions while others are ‘periphera!‘. Two representations of the self-concept relevant to many cancer patients, physical appearance and spirituality, were found in one study in the genera! population [53] to have the greatest variability among individuals in terms of importance. Additionally, current research views the self-concept as dynamic-as active, forceful, and capable of change [52]. The self-concept is viewed not only as having content and structure, but also as having a role in intrapersonal processes (information processing, affect, and motivation) and a wide variety of interpersonal processes (social perception; choice of situation, partner, and interaction strategy; and reaction to feedback). According to this view, it is appropriate to speak not only of the content and structure of the self-concept, but also of the power of the self-concept to define and determine interactions with the social environment. The confusion in the oncology literature over the use of self terminology might be clarified by adopting a more uniform theoretical stance. In keeping with current psychological theory, the self-concept should be operationalized as a dynamic collection of cognitive representations. SELF-CONCEPT AS DEPENDENT OR INDEPENDENT VARIABLE

Work in this area has generally taken one of two positions: self-concept as either an outcome or as a causal agent. The first position maintains that the experience of cancer has an effect on the self-concept. This belief appears to stem from the vivid persona! accounts of survivors, as told by individuals (e.g. [54]) and as discussed in the collective by researchers (e.g. [55]). The essential question from this perspective is: What happens to the self-concept during and after the diagnosis of, and the treatment for, cancer? This question treats the self-concept as a dependent variable-cancer changes some aspects of the self-concept-and leads to further inquiries: What about the self-concept is susceptible to change? When do the changes occur? How long do the changes last? The second position, which is compatible with the new field of psycho-oncology, as defined by Dreher [56]. holds that something about the self-concept is a causal agent in the self-cancer relationship. The

119

essential questions of this position are: HOW do aspects of the self-concept influence the development and course of cancer, the outcome of treatment, and adjustment? In this line of questioning, the selfconcept is treated as either an independent or moderator variable; something about the self-concept can either bring about the illness. affect the duration or severity of its course, influence the response to treatment, or facilitate or inhibit adjustment. AS depicted in Table 2, over three-quarters (77.8%) of the studies used some aspect of the self as a dependent variable. The most frequently investigated variable was self-esteem, often measured by the Rosenberg Self-esteem Scale [49]. Other self-related variables included self-concept, body image, selfdiscontent, self-appraisal, self-image, and sti_ma. Changes in the self-concept and other related aspects of the self are important outcomes for cancer researchers to consider. However, a strong case also could be made for using self-related variables as predictors of outcomes such as adherence to treatment regimen, adjustment to role loss or change, and perceived quality of life. As we will argue in later sections, it is likely that self-variables are both predictors and outcomes. The investigation of such concepts in well-planned longitudinal designs may explicate the conditions under which self-variables take on each role. UNIQUE AND SHARED COMPONENTS OF THE SELF-CONCEPT

Although the exact structural configuration of the self-concept is not yet determined, it is generally accepted that its cognitive content varies across persons [51]. This proposition corresponds with the belief that the self-concept is influenced by experience [57]. Thus, to the extent that experiences and their interpretations are shared, the content of the selfconcept may be similar across persons. This premise has implications for the study of self-concept and cancer. First, the effects of cancer on the self-concept are likely to be at least partially individualized. That is, individuals facing cancer and its treatment will come to the situation with a unique set of resources. For example, some persons may see themselves as being able to endure easily the most arduous of treatments, whereas others may see themselves as weak and likely to ‘fall apart.’ Second, the extent to which there are commonalities across self-concepts may be tied to how similar the individuals and the cancer experiences are. Similarities in individuals may be based on personality, lifestyle, or demographic features. Similarities in the experience may be based on the diagnosis, stage of the illness, prognosis, treatment protocol, care givers, or patient cohort. Our conceptualization of this issue is depicted in Fig. 1. In this figure, we illustrate two situations. In situation one, persons ‘A’ and ‘B’ have both been treated with bone marrow transplantation, an aggressive treatment used for several forms of cancer. Although these people have the same treatment, they are depicted both as having different self domains that are important to them and as having different levels of impairment in those domains. A self-concept

BARBARA CURBOW et al.

_ _--__ Q .z” a

5

5.

2 2

mg 5 E

Self-concept

inventory that did not include the self as a religious participant would identify person B as more impaired overall than he or she is. In situation two, we illustrate what might happen when persons who value the same self domains experience different treatments. For example, a mastectomy may not impair person C’s ability to have children, whereas a bone marrow transplant would almost certainly preclude it for person D [9]. An adequate research program on self-concept should untangle how responses to cancer are both unique and shared. However, as Cella and Tross [ 161 observe, most studies on survivors of cancer have used heterogeneous subject pools. To distinguish between shared and unique responses, researchers could employ these strategies: (a) narrow their samples to include specific groups of persons (e.g. Which self domains are affected in young females who are having lumpectomies?), (b) build individual difference variables into their designs (e.g. How do the affected self domains differ for young adult and middle-aged females who are having lumpectomies?), or (c) compare responses across different groups (e.g. How do the self domains that are affected differ for lumpectomy and mastectomy patients?). An examination of the subjects and designs employed in the self-concept and cancer studies reveals the extent to which these strategies have been considered. The subject samples from the 36 studies are described in Table I. Self-concept and cancer was most often studied for women; 18 of the studies (50.0%) investigated women only, while just two (5.5%) were restricted to men. Paralleling the use of women as subjects, a sizeable proportion of the studies (44.4%) focused exclusively on breast cancer. One-third of the studies either used patients from more than one cancer group or did not specify the type of cancer. The sizeable literature on breast cancer presented here is just a fraction of that found on other psychosocial aspects of this disease (e.g. [58-61]). This is perhaps the most specialized of the cancer literatures, and gains are being made in ascertaining which aspects of self-concept are most vulnerable. Aspects of self-concept that may be of importance in studies of breast cancer include sexuality, body image, and femininity. However, this type of detail is not available for most other forms of cancer. Although most of the studies reported a wide range in the ages of participants, an inspection of the means and medians reveals that approximately half of the studies investigated persons in their forties or fifties. Less information is available for other age groups (excluding pediatric patients) and few studies look for differences across age groups. A notable exception was the study reported by Penman et aI. [33] in which the sample was stratified by age decade. Finally, Table 1 presents information on whether the stage of the treatment process was controlled for by each study. A majority of the studies either did not narrow the time frame of the study or did not provide information on the time frame. For example, Bloom [ 131 reports that the participants were one week to two and one half years post-surgery; Clifford, Clifford, and Georgiade [17] report that the patients were in “some phase of reconstruction.” The remain-

and cancer

I21

ing studies did narrow the time frames so as to isolate the effects of specific events in the course of treatment. For example, Engelman and Craddick [20] investigated the short time span between biopsy for breast cancer and diagnosis; Hobfoll and Walfisch [27] collected their data one day before the biopsy and again three months post-biopsy. Penman et al. [33] collected both cross-sectional and longitudinal data. In both portions of their study, the researchers collected data at five clearly defined time periods post-surgery. As we will discuss in a later section, this is a critical piece of information to consider in study designs. Overah, many of these studies used broadlydefined samples: investigators often did not narrow the age groups, the phase in the treatment cycle, the treatment, or the type of cancer. However, research opportunities to control on all of the above variables are probably rare and there is evidence that investigators did consider this issue (e.g. [l8, 191). With the notable exception of Penman et al. [33], there were few examples where individual difference variables were built into study designs, although some studies did consider the effects of age or gender (e.g. [ 15,25,31]). A sizeable proportion of the studies made comparisons across groups; most frequently they examined the effects of different medical or counseling treatments. MULTIDIMENSIONAL ASPECTS OF THE SELF-CONCEPT

One significant achievement of the past decade has been to recognize the limitations of using generalized. global measures of self-concept [52]. Global measures may not be sensitive to subtle changes in individuals or tap the particular aspects of self that are most vulnerable to change in a set of circumstances. For example, a cancer patient whose treatment causes extensive mutilation of the body may have changes in self-concept that are vastly different from those experienced by a patient whose treatment is less invasive. While a global measure (such as self-esteem) may show disturbances as compared to healthy populations, it will not show which aspects of the self-concept have been altered. Both the conditions of the illness and treatment and individual differences in what is important to the patients will affect which aspects of the self-concept are influenced. For example, some treatments such as the high levels of radiation in bone marrow transplants, interfere with patients’ reproductive functions [62]. This obviously has different meanings for young adults than for middle-aged persons. Within demographic subgroups, people will vary on what they most value about themselves, for one person it may be athletic abilities, for another it may be cognitive abilities. A global measure cannot describe individualized losses. A useful research strategy to deal with this issue would be to conduct formative studies on the particular aspects of the self-concept that are vulnerable to change for a defined target group (cf. [63]). Once these aspects of self are identified, they can be tracked over time for members of the group. These individualized measures can be consolidated with global

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indices for psychometric (e.g. establishing validity) and comparison purposes. Such an approach has been reported for bone marrow transplant patients 1641. The multidimensional aspects of the self-concept were not widely addressed. Most of the studies employed global measures of self-esteem or selfconcept. One area of research that is starting to make inroads into the development of more specialized measures is that of breast cancer. Because breast cancer often requires disfiguring surgery, some researchers have focused on variables such as body image [IS], emotional distress at viewing the results of a mastectomy [37], and various aspects of self-image who have [39]. Similarly, some researchers investigated the psychosocial impact of other cancer surgeries have examined variables such as selfdiscontent [22], the cosmetic impact of the surgical scar 1151, and stigma [31]. BrDtt~Ec-rtoN~L INFLCENCE SELF-CONCEPT

0~ THE

The self is no longer viewed as a passive recipient of information and influence from the social environment. Rather, the self-concept is now viewed as an active agent that “. . . mediates most significant intrapersonal processes (including information processing, affect, and motivation) and a wide variety of interpersonal processes (including social perception; choice of situation. partner, and interaction strategy; and reactions to feedback)” [52, p. 3001. As an active agent, the self-concept of the cancer patient can have an influence on other members of the social environment. This may happen by routes such as the biased processing of information, the employment of behavioral tactics that will moderate negative emotions, the withdrawal from threatening social interactions, and the misreading of interactional cues. For example, there are distinct biases in the processing of self-related information; people are inclined to focus judgment and memory on the self, perceive the self as effective in achieving desired ends, and resist cognitive change [51, 571. Outcomes of these biases may include an inability to process accurately information regarding treatment options, technological aspects of procedures, or even the actions of significant others. This faulty processing could lead not only to poor decision-making but to strained interpersonal relations as well. The implication of this theorizing for research on the self-concept and cancer is that. in addition to looking at the cognitive content and the affective regard of the individual patients, investigators need to focus on both the intrapersonal and interpersonal outcomes of changes in the self-concept. Researchers could: (a) explore the longitudinal relationships between self-concept and variables such as decisionmaking skills, realistic knowledge of the disease, treatment, and prognosis, and cognitive functioning (keeping in mind that the treatments may cause impairments in these areas [65]), and (b) trace the impact of the variables on other _ patient’s . self-concept . members of the soctal envtronment.

We did not find any instances of this bidirectional approach. One study that approximated this goal was conducted by Bloom and Spiegel [14]. Using a crosssectional design, these authors found that selfconcept was positively related to social functioning. CHANGES IN THE SELF-CONCEPT OVER TIME

A long-standing issue of debate is whether the self-concept is stable or malleable. Gergen [66] has summarized evidence for the existence of ‘momentary fluctuations’ in the self-concept and reviewed solutions that allow for ‘stability within change.’ One solution is to distinguish between what is central (stable) to an individual and what is peripheral (unstable). Markus and Wurf [52] discuss the “working self-concept” as the “. . . continually active, shifting array of accessible self-knowledge” (p. 306). The working self-concept may be the portion that is most amenable to change; core areas may remain relatively stable. While the dominant view among theorists is that some aspects of the self-concept are susceptible to change, a second position (e.g. [67]) points to the tendency of the self to resist discrepant information. Even this position, however, allows for the possibility of changes to the self-concept by outside agents under conditions of ‘potent feedback’-feedback that comes from a credible source. that is not farfetched. that relates directly to the self-concept. and that is delivered by multiple sources [67]. Given the extreme nature of the feedback that engulfs many cancer patients. it is likely that changes to the self-concept will occur; however. these changes may not occur at the same rate for all persons. If people actively resist discrepant information regarding the self-concept [67], or engage in cognitive conservatism [51, 571, it is plausible that they will vary in their ability to resist cancer-related changes. The implication of this reasoning for research is that people may continue to experience changes to the self-concept over time, but that the patterns and rates of change may vary among individuals. Individuals will bring a ‘precancer self-concept’ to the situation that is unique in terms of the exact configuration of content and structure. Once individuals crossover into the ‘cancer self,’ they may begin to share more content and structure with others; however, the selfconcept will shift over time as patients become immersed in their treatments and recoveries. For example, the self-concept at diagnosis may be quite different from the self-concept during treatment or the self-concept during relapse. While theoretically it is possible for a self to pass through and become ‘postcancer,’ this may not occur for a sizable proportion of persons. Some persons will die before a postcancer self is attained and some will never be free of its influence. (See Cella and Tross [l6], for a thoughtful discussion of the psychological late effects of cancer.) An illustration of this point is found in Fig. 2. For this person, four domains that are important and unthreatened are present before the diagnosis. However, as the person proceeds through stages of treatment and recovery, these self domains change in both importance and level of threat.

Prediagnosis self

1

0

l

Minor threat to self domain

Moderate threat to wlf domain

Major threat to self domain

Short-term Post-Treatment

Fig. 2. Depiction of changes to self domains over time. Size of domain reflects relative level of importance.

Legend

Postdiagnosis, pretreatment self

Long-term Post-Treatmen

E

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Since cross-sectional studies examine only one point in time, they cannot capture the process or change that may occur in an individual. In addition, a cross-sectional study that examines some aspect of the self-concept in a loosely defined sample of ‘post-treatment’ patients may inadvertently combine persons who are in recovery, relapse, or postcancer. Approximately one-third of the studies employed two or more measurement cycles. One group of researchers [24,30] employed four to five measurement periods at carefully spaced intervals. Penman et al. [33] collected data at five points post-surgery. DISCUSSION

The studies reviewed here do not, in general, reflect current conceptualizations of the self-concept or employ design features that could assist in untangling the self-concept/cancer relationship. These problems are not unique to this area of research in psychosocial oncology; indeed, as the field has grown there have been other calls for improvements in methods and measures (e.g. [68]) and other sets of guidelines for research (e.g. [69]). At the risk of repeating points that have been made by others, we offer specific research strategies that might be employed to improve the quality of work in self-concept and cancer. Our suggestions are summarized in Table 3 and discussed in detail below. Definition

of self-concept

The most basic task in the field is to work towards clarifying the definition of self-concept that is being investigated. As we have noted previously, there is widespread interchange of the terms self-concept and self-esteem in the literature, and the latter is generally used to refer to global self-esteem. The definition of self-concept (or self-esteem) employed in a particular study should be linked to current definitions in the field of psychology or other behavioral or social sciences. We believe the goal of psychosocial oncology should be to meld existing theory with applied research and to offer feedback when theory and practice do not fit. Advances in gaining consensus on the most appropriate definitions of self-concept and self-esteem in Table Aspect

of self-concept

Definition

3. Summarv

of research

cancer research will depend upon more intensive interactions between those who generate theories and those who test them in applied settings. While this debate can be taken up by the literature, perhaps other forums might be more appropriate. Interdisciplinary bridges might be built by holding special conferences on the topic. by sponsoring symposia at professional meetings, and by adding persons with strong theoretical backgrounds to research teams. Our final suggestion concerning the definition of self-concept is to focus on aspects of the self that are most central to the population of interest. Although concepts such as global self-esteem may be of relevance to all cancer patients, other more specific aspects of selfhood may be important to subgroups of patients. For example, sexuality might be central to breast cancer patients, disfigurement to head and neck cancer patients, and infertility to bone marrow transplant patients. Both the literature and pilot studies should be used to inform researchers on the aspects of self that need detailed examination in a study. Self-concept

strateev

Unique

and shared

Multidimensional

or independent

components

influences

variable

definition

definition

influences

formalize

(a)

build

(b)

specify

Cc)

compare

(a)

conduct

model

individual

time

of hypothesized difference

subgroups responses

track

(c)

consolidate

(a)

explore

across studies

relationships

variables

into

to the population

(I priori

the design

different

groups

on which

aspects

of the self-concept

measures

individualized

the

longitudinal

over time

and standard

measures

relationships

between

self-concept

variables

trace the impact

of the patient’s

longitudinal

select time

are

to change

individualized

employ

literature

that are central

a priori

formative

tb)

strategies

psychosocial

(a)

(b) over

to current

focus on aspects of the self-concept

cognitive

Changes

research

employed

cc)

susceptible

Bidirectional

cariable

recommendations Possible

clarify link

as a dependent

or independent

Most of the literature reviewed here treated selfconcept as a dependent variable. We would argue that the role of self-concept should not always be assumed to be that of an outcome variable. Research on self-esteem and social support illustrates this point. Recent discussions (e.g. [70]) and research [32,71] have emphasized the role of social support in determining self-esteem in cancer patients. However, there also exists a competing interpretation: persons low in self-esteem are unable to garner social support. Wortman [72] observed that certain characteristics of the support recipient (e.g. personality traits, coping style) may influence whether or how much social support is provided. Regarding self-esteem, it is reasonable, on the basis of previous research ([73] cited in [72]), to speculate the cancer patients high in self-esteem are likely to receive greater social support than those who are low in self-esteem. In yet a third interpretation, Hobfoll and Walfisch [27] found that self-esteem acted as a resource variable that assisted cancer patients in coping with stressors. These researchers tested social support against self-esteem and found that social support did not contribute to

research

of self-concept

Self-concept

as a dependent

points

self-concept

on other

designs that

are meaningful

to the population

persons

and

Self-concept

adjustment after the effects of self-esteem and mastery were taken into account. What is clear is that self variables may play a variety of roles in cancer research: dependent variable, independent variable, moderator, or mediator. An important step in the design of studies is to formalize a model of the hypothesized relationships apriori. Designs should then be chosen that allow for the direct testing of the model. Unique and shared components

We have argued that all cancer patients are individuals; they have unique combinations of concerns, expectations, strengths, values, and resources. While we may look for generalities across the lives of patients, this search may never be complete-at the end there will always be a ‘proportion of variance’ in responses that is unique to the individual. Our goal must be to segment subgroups in the most precise manner so that we can identify the aspects of self that are likely to be involved in cancer diagnosis, treatment and recovery. Our suggestions are pragmatic: build individual difference variables into the design, specify subgroups a priori. and compare responses across different groups. The implementation of these suggestions is not so straightforward as they imply a body of knowledge that is, as yet, incomplete. There are several avenues for informing decisions concerning group segmentation and the selection of comparison groups. First, and most basic, groups should be selected based upon knowledge of life span development. As Rowland has discussed [74, 751, life tasks vary across developmental stages; the aspects of the self that are important are also likely to vary. Evidence for this perspective comes from McCrae and Costa [76] who found differences in the salience of certain aspects of the self across age groups. Specifically, they found that older persons were more likely to describe themselves in terms of their life circumstances, interests, beliefs, and hobbies, while younger persons described themselves in terms of routine tasks, personal relationships, nuclear family roles, and personality traits. Second, other individual difference variables that may be important should be considered. These may include gender, level of education, type and nature of employment, income, race, personality traits, interpersonal resources, illness history, and treatment protocol. While no study could reasonably account for all of these variables, it is realistic to expect that several of the most important indicators be included. These variables should be selected based upon the nature of the study’s hypotheses. For example, a study on return to work by cancer patients may be most concerned with selecting patients that come from a variety of pretreatment occupational categories (e.g. is return to work more salient to the self-concept of professionals than for blue collar workers?) Finally, it is important to draw comparisons across groups whenever possible. This may be done by using comparison groups within a single study (e.g. mastectomy versus lumpectomy patients) or by using instruments that have been employed with other groups of cancer patients.

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Multidimensional aspects

Implied in our discussion thus far is the premise that there are multiple aspects of the self that may be implicated in cancer and cancer treatment. For this reason, it will be most productive for the field to move away from designs that depend solely upon global indices of self-esteem or self-concept. Our suggestions here are to conduct formative studies on which aspects of the self-concept are susceptible to change, track individualized measures over time. and consolidate individualized and standard measures. Researchers might employ a strategy such as the following. First, through pilot studies (focus groups, interviews, surveys) researchers may identify aspects of the self that are most susceptible to change for a particular group. Second, standard instruments that focus on these aspects of the self may be incorporated into the study design. With these measures, particular domains of self could be tracked over time to see if they remain salient. Third, the relationship between the domains of self and global indices of self-concept or self-esteem could be examined and the relative predictive power compared. For example, using an instrument that measures personal changes resulting from bone marrow transplantation, Curbow et al. [64] found in a crosssectional survey that a frequent negative change among long-term survivors was a decrease in physical strength. Based upon this knowledge, future studies of this group might incorporate scales that focus on the physical self-concept. Scores on this domain might also be related to global self-esteem or other salient self domains. Bidirectional injuence

Research to date has generally failed to consider how the self-concepts of cancer patients may influence other outcomes. We have posited two avenues of this influence: the biased processing of information and the structuring of interpersonal encounters. One particularly rich area for study is to investigate the role of self-conceptions in the processing of medical and treatment information. For example, do persons who highly value a self domain ignore, discount, or transform information that concerns that domain? Questions such as this might be investigated by examining the influence of a particular self-conception (e.g. the sexual self) on the ability to process accurately and recall information that involves that domain (e.g. impotency or sterility). The ability of persons to change their self-concepts is also an area for study. Taylor and Brown [77] have suggested that, in response to recurring negative feedback in a particular life domain, individuals protect their self-esteem by downgrading the importance of the threatened domain. In this way, individuals isolate the persisting negative feedback from the rest of the self-concept. McCrae and Costa [76] have similarly argued that individuals will attempt to devalue the salience of a role they cannot perform well, focusing their attention instead on life domains that are more in line with high self-esteem. Cancer patients’ ability to adapt to self changes by devaluing threatened aspects of the self may be an important predictor of long-term adjustment.

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We also suggested that the role of the patients’ self-concept in determining social interactions be explored. As discussed previously, it is possible that self-esteem may influence the nature and extent of social support a patient receives. It is also possible that self-variables may inff uence the way patients are treated by physicians and other medical personnel. For example, information may be withheld or ‘softened’ for patients with low self-esteem or other vulnerabilities. This implies using the patients’ selfconcept or self-esteem as a predictor of outcomes that involve other persons.

4

Changes

8.

ocer

time

Finally, we have argued that individuals change over time and that these changes may occur at different rates. Our first suggestion, which has often been voiced in the cancer literature, is to conduct longitudinal studies. Our second suggestion is to attempt to select time points that are most germane to the population. For example, Lesko [78] has mapped recently the treatment courses for a number of hematological malignancies. Depending upon the diagnosis and the treatment, patients will have varying medical and psychosocial milestones. Data points should be tied to these milestones rather than to arbitrary collection times. Although there is a burgeoning research literature on self-concept and cancer, the area is still in its infancy. We have outlined some strategies that might help to move the area along with the realization that many of these tasks will not be easy to implement. We believe that continued study on this topic has the potential for creating meaningful contributions to both theory and treatment. Most important, research on self-concept and cancer may lead to positive changes in patients’ lives. To cite one example, Markus and Nurius [50] have proposed that the ability to construct positive possible selves may be one factor that facilitates recovery from a life crisis. If research proved this to be true for cancer patients, this psychological skill could be taught to recovering patients through participation in counseling or self-help groups. Progress in this area, however, will be made only if future research tests hypotheses generated from current conceptualizations of the self-concept. Ackno~~,(edgenlenrs-Preparation of this paper was funded by a Biomedical Research Support grant from the Johns Hopkins University, Grant PBR-40 from the American Cancer Society and Grant CA49218 from the National Cancer Institute.

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9.

10 II.

12.

13.

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17.

18.

19.

20.

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