Mapping out the social experience of cancer patients with facial disfigurement

doi:10.4236/health.2010.25063

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Vol.2, No.5, 418-428 (2010)

doi:10.4236/health.2010.25063

Health

Openly accessible at

Mapping out the social experience of cancer patients

with facial disfigurement

Alessandro Bonanno*, Jin Young Choi

Department of Sociology Sam Houston State University, Huntsville, USA; *Corresponding Author: SOC_AAB@SHSU.EDU

Received 25 November 2009; revised 14 January 2010; accepted 16 January 2010.

ABSTRACT

This article contributes to the limited literature

on the social consequences of cancer gener-

ated facial disfigurement by reporting the result

of an exploratory analysis of interaction be-

tween facially disfigured cancer patients and

strangers and acquaintances (secondary groups).

Secondary groups are those in which member-

ship occurs due to performance of formal and/or

non-intimate roles. Interaction is studied as it

takes place in different social settings. Indivi-

duals who are affected by cancer of the head

and neck region can now expect to survive for

many years after the cancer is detected and

later surgically removed. Because of surgery,

these survivors live the rest of their lives with

facial disfigurement and are stigmatized and

socially excluded. It follows that a new and so-

cially relevant situation has emerged: as medi-

cine develops and allows more patients to sur-

vive, it forces them to spend significant portions

of their lives dealing with the stigma associated

with facial disfigurement. Research on social

issues pertaining to facially disfigured cancer

patients remains sparse. Limited knowledge has

been produced on the “social context” within

which interaction between the disfigured and

relevant social groups takes place. To date most

research has focused on the individual and

his/her ability to adapt to the condition of fa-

cially disfigured. To address this scientific gap

and document the manner through which the

interaction process is socially created and

evolves, interviews with fourteen facially dis-

figured cancer patients were carried out. These

interviews were designed to reconstruct the

interaction experiences of these individuals in

different social contexts. Data were analyzed

through the qualitative approach of grounded

theory. Results indicate that patients can be di-

vided into two groups: Occasionally Comfort-

able Patients and Always Comfortable Patients.

Occasionally comfortable patients are individu-

als who experience different levels of comfort in

interaction. In some situations they do not feel

stigmatized, but other interactions constitute the

contexts within which this discomfort emerges.

Discomfort in interaction was employed as an

indicator of stigmatization. Interacting groups

were divided into small and large. Intrusion

(unsolicited attention to patients) in interaction

in large and small groups always generates

uncomfortable situations. Sympathy (unsolic-

ited comments and/or actions in support of pa-

tients) is associated with comfort in interaction

in small groups and produces varying patterns

in the case of large groups. Benign neglect (a

situation in which interacting individuals do not

pay particular attention to patients) produces

comfort in interaction within large groups and

varying outcomes in the case of small groups.

Always comfortable patients are those who do

not experience discomfort in interaction regard-

less of the size and characteristics of the inter-

acting group. The article concludes by stressing

that facially disfigured cancer patients should

be prepared to face different interaction pat-

terns. Simultaneously, efforts should be made to

educate patients and the general public about

these interaction patterns.

Keywords: Facial Disfigurement; Cancer; Stigma;

Social Interaction

1. INTRODUCTION

The objective of this article is to illustrate the results of

an exploratory analysis on the patterns of social interac-

tion experienced by individuals who are facially disfig-

ured because of cancer. Individuals who are affected by

cancer can expect to be cured and/or survive for a num-

ber of years after the cancer is detected and later surgi-

cally removed [1,2]. This is also the case of patients with

head and neck cancer who remained facially disfigured

A. Bonanno et al. / HEALTH 2 (2010) 418-428

419

because of it [3,4]. In this particular instance, surgical

intervention signifies the removal of portions of the face

that are affected by the malignancy. Additional conse-

quences are possible and they often include the collapse

of parts of the face that may not be directly touched by

surgical intervention [5]. Accordingly, patients’ facial

disfigurement may involve a larger portion of the face

than that originally affected by cancer [6]. Surgical pro-

cedures to correct these alterations are common along

with the availability of increasingly sophisticated pros-

theses [3]. Yet, results often do not rectify notable dif-

ferences from the “normal” face. Accordingly survivors

typically live the rest of their lives with major alterations

of their normal facial appearance.

In contemporary society, the face represents one of the

most notable items employed to determine identity and

participate in social interaction [7-9]. It is a central ele-

ment of communication [10,11], an item employed to

attribute both “normality” and ownership of socially

desirable characteristics [12-16] and a feature that de-

fines interaction as individuals endowed with a pleasant

face are better treated than other and less attractive

members of society [17,18]. Owing to the social impor-

tance of the face, facially disfigured individuals are

stigmatized and experience difficulties when interacting

with other segments of society [11,12,14-16,19-21]. It

follows that a new and socially relevant situation has

emerged. As medicine develops and allows more pa-

tients to survive, it also makes them spend significant

portions of their lives dealing with the stigma associated

with facial disfigurement.

Research on social issues pertaining to facially disfig-

ured cancer patients remains sparse and attracts even less

attention than the already limited research associated

with other forms of acquired and congenital disfigure-

ment [10,15,22-24]. Additionally, analytical problems

have limited the accuracy of available research results

[25]. In this context, limited knowledge has been pro-

duced on the “social context” within which interaction

between the disfigured and relevant social groups takes

place [21,25]. Throught this paper we would like to con-

tribute to this limited literature. In particular, this article

offers the results on an exploratory analysis on patterns

of interaction between disfigured patients and members

of secondary groups (acquaintances and strangers) as

interaction occurs in different social settings. Interaction

with other groups, such as family members and friends

(primary groups), is important. However, in this work

we focus exclusively on interaction between patients and

members of secondary groups. The study of the interac-

tion with other groups remains a relevant topic to be

further explored.

Methodologically, the study consists of in-depth inter-

views with fourteen cancer patients who underwent sur-

gery to treat head and neck cancer and remained facially

disfigured because of it. Patients were enrolled following

a protocol that excluded minors and those who could not

express themselves in English. Given the relative limited

size of this patient population, the adoption of a qualita-

tive approach was recommended. A semi-structured

questionnaire was employed and data were analyzed

employing Grounded Theory [26]. Grounded theory is a

technique of qualitative data analysis that allows the

identification of patterns directly from the data. Rather

than hypothesis verification (pre-existing ideas to be

verified in reality), grounded theory allows the devel-

opment of categories (variables) and their relationships

(patterns) that are not established a priori. These catego-

ries and patterns emerge directly from the data and can

be always traced back to the data themselves. Because

there are no pre-conceived hypotheses to be tested, this

technique is particularly appropriate for exploratory

analyses [26]. This is a qualitative study as it is aimed at

illustrating the manner though which the patterns of in-

teraction unfold. It explains the “how” these patterns

manifest themselves and develop rather than how often

they occur in reality. It also stresses the process through

which the interaction is created and grows rather than its

outcomes. Given the small size of the sample, this ap-

proach has been considered more appropriate than quan-

titative statistical analysis.

The statements concerning the result have been veri-

fied through established data verification techniques. In

particular the techniques of “saturation” and “negative

cases” were employed. In the case of saturation, the

creation of categories is verified by searching for possi-

ble instances in which data cannot be explained by the

category in question. When no more instances to be ex-

plained by the category in question are found in the data,

the category is said to be saturated and therefore verified.

In the instance of negative cases, categories are com-

pared with situations in which their attributes are contra-

dicted by evidence. As categories that have negative

cases are eliminated, the remaining ones are considered

verified. These techniques were applied to the construc-

tion of the categories and patterns employed in this arti-

cle.

The objective of the article is to identify patterns of

interaction between facially disfigured individuals and

members of secondary groups. Secondary groups were

defined as non-intimate, formal groups consisting of

acquaintance and strangers. Results indicate that facial

disfigured patients feel stigmatized when interacting

within small and large groups and the interacting coun-

terpart(s) shows “intrusion” (i.e., unrequested attention

to patients including unwanted questions, remarks and

stares). Patients respond in varying manner when “sym-

pathy” (i.e., unsolicited comments and/or actions show-

ing support) and “benign neglect” (i.e., no particular

attention paid to patients) characterized the interaction. A

group of patients that do not feel stigmatized during

various types of interaction was indentified. The paper

A. Bonanno et al. / HEALTH 2 (2010) 418-428

420

Openly accessible at

concludes by stressing the importance of studying stig-

matization through a sociological approach and by

pointing out that cancer survivors and the general public

alike could benefit from education about these interac-

tion outcomes.

2. CANCER AND FACIAL

DISFIGUREMENT: SALIENT

LITERATURE

Stigma is a mark of disgrace attached to people who are

considered different. As indicated by Goffman [13], dif-

ference is socially constructed and is the outcome of

discrepancies between an individual virtual social iden-

tity (expectations about what that individual ought to be)

and his/her actual social identity (the attributes he/she

actually posses) [13]. When the actual social identity is

perceived as departing from normality, the individual is

“reduced in our minds from a whole and usual person to

a tainted, discounted one. “Such an attribute is a stigma”

[13]. Stigma is attached to an individual’s feature “that is

deeply discrediting” and that separates that person from

the group of the normals. However, its actual genesis

should not be linked to attributes but, rather, to the in-

teraction between the stigmatized person and other

members of society. “A language of relationships, not

attributes, is really needed” Goffman states [13]. Stigma

is generated by the existence of a number of blemishes.

There are those of individual character such as homo-

sexuality, dishonesty, imprisonment, radical political

behavior, and addiction. There are those of tribal stigma

that are related to a person’s religion, ethnicity or race.

And there are those of “abominations of the body” that

refer to physical abnormalities. Goffman includes facial

disfigurement in this category [13].

Following the seminal work of Erving Goffman [13],

social stigma has been widely studied and this produc-

tion includes works such as those on stigma generated

from diseases (i.e., cancer and AIDS) [27], physical dis-

abilities [28,29], and mental health1 [30,31].

In spite of this wealth of contributions, the stigma

caused by facial disfigurement has been the subject of

only a relatively small number of works [10,15,21,22,

24,32]. These analyses stressed the social importance of

the face and the problems that affect those who display

visible facial blemishes [12-16]. In a society in which

individuals are fully clothed for virtually all of their so-

cial activities, the face represents one of the most notable

physical attributes and a significant source of social in-

formation prior to, and during, social interaction [8,9,

30,33]. Accordingly, people possessing an attractive

face2 are not only considered physically pleasing3, but

they are often viewed as endowed with intellectual and

emotional characteristics that are unrelated to their

physical appearance [10,11,36]. Intelligence, kindness,

likableness, and high morality are frequently associated

with an attractive appearance. Unsurprisingly, these in-

dividuals are also better treated by others than less at-

tractive members of society [17,18]. Lacking some of

these physical attributes, facially disfigured individuals

commonly engender negative responses by other mem-

bers of society. Stigmatized and socially excluded, their

ability to interact is often distorted and interaction is the

source of problems including verbal and physical abuse,

ridicule, hostile behavior, and isolation [10,12,37].

The literature identifies two types of facial disfigure-

ment: congenital and acquired. Acquired disfigurement

received less scientific attention than the already limited

literature on congenital disfigurement [24]. Acquired

disfigurement is further divided into trauma- and can-

cer-generated disfigurement. Research demonstrates that

individuals with acquired facial disfigurement suffer

psycho-social consequences that are different and, at

least to some degree, more pronounced than those ex-

perienced by individuals with congenital disfigurement

[18,24]. Among individuals with acquire facial disfig-

urement, cancer patients4 experience less social and

psychological problems than individuals who have been

disfigured because of trauma [38]. However, cancer pa-

tients’ “fear of dying is immense” [39]. And this situa-

tion affects these individuals and their family members’

perception of disfigurement [40]. In this context, patients

are more preoccupied with the evolution of their cancer

than with the social consequences of the scars that the

disease left on their faces [24,40]. As this fear of dying

diminishes, however, the process of dealing with the

deformity affects both patients and family members

2Early research on physical appearance paid more attention to the face

than the rest of the body. It was stressed that the face was the most

visible part of the body, its stability of appearance was grater than

body appearance both in terms of the individual’s lifespan and devel-

opmental stages, and physical attractiveness was predominantly deter-

mined by the face. Recent research, however, while still emphasizing

the face [4], has underscored the growing importance of the body in

the determination of beauty and attractiveness [9,20].

3“…Beauty is perceived as residing principally in the face.” [33].

4While the social perception of cancer has changed in recent decades,

this disease engenders a wide variety of attitudes and responses tha

differentiate it from other pathological situations [46]. Often, these

attitudes and responses are stigmatizing [47,48]. However, differences

have been recorded between reactions to forms of cancer that are per-

ceived as “uncontrollable”—such as breast cancer – and those that are

erceived as “controllable”—such as lung cancer due to smoking.

Because the latter are seen as deriving from the patient’s voluntary

actions, more stigmatizing reactions are expected [49].

1This abundant literature has also underscored important limits of the

use of the concept of stigma. For instance, stigma has been studied

with a strong individualistic focus, it is often employed by people who

do not belong to stigmatized groups, there is no consensus on a com-

mon definition, and the existence of these multiple definitions allow

the charge that this concept is too inclusive to be actually informative

([28] Cahill and Eggleston, 1995:682; [34] Link and Phelan, 2001:

365-366). There are also uncertainties about its manifestations as “felt”

stigma—the individual’s “shame” associated with the blemish—is

much more common than the rare “enacted” stigma—or the existence

of overt episodes of discrimination ([35] Jacobi, 1994:269).

A. Bonanno et al. / HEALTH 2 (2010) 418-428

421

[39,40]. The association of cancer and disfigurement is

persistent. In effect, therapy almost inevitably mandates

surgical removal of cancer-affected parts of the face

making it an undesirable consequence of successful

medical intervention [20,41,42].

Among the limits of this otherwise important litera-

ture is the lack of attention paid to the social context

within which the consequences of facially disfigurement

emerge [12,21,25,32]. Emphasis is placed on the indi-

vidual, his/her characteristics, and efforts to adapt to

his/her condition of disfigured [4,39]. This posture

downplays “the everyday experience of the disfigured

population in social settings” [17,21,25,32,37,43]. In this

context, the “interaction process” through which disfig-

urement is experienced is viewed almost exclusively in

terms of the significance of individual behavior as a pre-

dictor of social outcomes [19,32,43]. This is also the

case when other social actors—such as partners—are

studied [37,44]. In particular, limited attention is paid to

the fact that disfigurement is socially constructed and

generated through processes of interaction that involve

multiple actors and take different forms according to the

settings in which they unfold [21].

The individual remains the research focus also in

studies on the relationship between cancer-generated

facial disfigurement and stigmatization [45]. Indeed,

research on stigma has been “decidedly individualistic in

focus” [34]. Accordingly, the ways in which interaction

between the facially disfigured and the “normals” un-

folds in different realms of society has been understud-

ied. As Thompson and Kent put it “Most studies have

examined the ‘view form the inside,” with little work

[carried out] on the social and the ‘view form the out-

side’” [25].

In this literature, the interaction of disfigured indi-

viduals within primary groups has been privileged over

than within secondary groups [15,16,45]. In particular,

the spheres of the “family” and “caregivers” are por-

trayed as social settings in which the disfigured find

more comfortable terms of interaction. The family is

seen both as a “safer place” in which the disfigured feel

protected and supported and the institution that provides

them with alternative messages than the stigmatizing

ones coming from society and its strangers [15,16]. In-

teraction with caregivers, and in particular those between

surgeon, social workers and disfigured patients, is also

viewed as comfortable [15]. To be sure, race-, ethnicity-,

and culture-based forms of discrimination in the hospital

are documented [16] and improvement in the manner in

which health care professionals deal with those who are

facially disfigured is frequently indentified as a primary

programmatic objective. Nevertheless, the hospital is

often identified as one of the settings in which patients

achieve comfort in interaction [15].

The same literature indentifies secondary groups in

terms of “strangers” who populate “public places” where

they not only intrude into the lives of the facially de-

formed through “staring, remarks, and questions, or ob-

vious eye avoidance [16], but also negate that “civil in-

attention” normally granted to other members of society

[16]. These groups constitute the “popular mind” [16]

that produces “generalized prejudice” [16]. The social

settings where secondary groups exist are seen as gener-

ating stigmatization as people deal “differently with

those who have undergone facial surgery” [15] and en-

gender “fear” to the disfigured [15]. Ultimately, society

is the source of generalized stigmatization through

widespread stereotyping that allows the “…unsightly

face [to be] utilized as a visible symbol or a personifica-

tion of evil, disease, criminality, or mental deficiency”

[16]. This process of stigmatization is so pervasive that it

is viewed as if it is conducted uniformly throughout so-

ciety regardless of actors and settings [15,16]. While

evidence indicates that society is the primary source of

stigmatization [10,20,24,37,39], the manner thought

which facially deformed cancer patients experience

stigmatization in different spheres of society is under-

studied [45]. van Doorne and his associates [39], share

the view that members of the immediate family provide

strong support to cancer patients who are facially disfig-

ured. They also stress that strangers are consistently the

source of stigmatization. In their view, further investiga-

tion is needed to ascertain the manner in which non-

immediate family members and acquaintances react to

facially disfigured patients.

In essence, the study of stigmatization of the facially

disfigured is couched in approaches that stress the ac-

tions and adaptability of the individual, on the one hand,

and the homogenous dimension through which stigmati-

zation is created in society, on the other. In this context,

the manner in which facially disfigured cancer patients

experience stigmatization while interacting with secon-

dary groups in different spheres of society has not been

adequately explored. This literature does not differenti-

ate between the many settings that form the sphere of

society and that are the contexts in which interaction

with secondary groups takes place [45]. Owing this gap

in the literature, the objective of this paper is to provide

an exploratory analysis of the patterns of social interac-

tion experienced by individuals who are facially disfig-

ured because of cancer as they interact with members of

secondary groups.

3. METHODS

This exploratory research employed in-depth interviews

with fourteen individuals who were facially disfigured

because of head and neck cancer. A purposive sample

was selected from a list of patients who were registered

at MD Anderson Cancer Center in Houston, Texas. This

A. Bonanno et al. / HEALTH 2 (2010) 418-428

422

particular group of patients had cancer of the upper face

area and specifically orbital and periorbital cancer. Po-

tential participants were identified following the re-

cruitment guidelines. They were adult patients (18 years

old and older), who were diagnosed with various forms

of head and neck cancer, underwent facial surgery to

remove the malignancy and, in the process, acquired

observable changes in their facial appearance. Addition-

ally, they were required to be able to communicate in a

meaningful manner with investigators.

In-depth individual interviews were conducted by

phone between January 2008 and April 2009. Twenty

potential participants were contacted. Three of them

could not participate for scheduling problems and three

refused to be part of the project. Finally, a total of eight

men and six women were interviewed. The median age

of these patients was 66 years and the youngest patient

was 31 and the oldest 81. At the time of the interview,

the post-surgical period ranged from ten months to thirty

five years and the median was five years. Some patients

underwent additional reconstructive and plastic surgical

procedures. While the extent of disfigurement varied, all

of the patients were left with significant alterations in

their facial appearance.

A semi-structured questionnaire was employed. Ques-

tions covered topics such as the individual’s demo-

graphic and socio-economic characteristics; experience

with cancer and treatment; perceived attitudes and ac-

tions of others; and interaction in various events and

places. Patients were interviewed by a single research

team member. This procedure was adopted to assure

consistency in the interview procedure. With the pa-

tient’s consent, interviews were audio recorded and

written notes were also taken.

The transcribed texts were analyzed through grounded

theory methodology [26,50]. This methodology permits

the identification of conceptual categories and patterns

among them from the text. Categories and patterns were

verified through the techniques of “saturation” and “neg-

ative cases.” Secondary groups were defined as noninti-

mate, formal groups formed by strangers and acquaint-

ances. Following data analysis, salient interaction pat-

terns were identified and patients were divided into those

feeling comfortable, uncomfortable or having varied or

mixed feelings. The feeling of uncomfortable was con-

sidered an indicator of the patient being stigmatized ei-

ther in terms of felt stigmatization or enacted stigmatiza-

tion. Felt stigmatization refers to the perception of the

patient. Enacted stigmatization refers to overt actions of

stigmatization. Interaction patters were identified and

divided into three categories. Intrusion indicates that

people pay unsolicited attention to patients, ask un-

wanted questions, make unwelcome remarks and stare. It

also indicates that they make their unspoken curiosity

felt. Sympathy refers to unsolicited comments and/or

actions showing support to patients and the desire to be

of assistance. Benign neglect denotes a situation in

which interacting individuals did not pay particular at-

tention to patients. Size of interacting group was divided

into small and large. These concepts indicate that the

secondary group in which interaction took place was

either large or small. The actual size of the group was

determined through patients’ own descriptions of the

settings.

4. FINDINGS

Following grounded theory analysis of the data, two

groups of patients were identified: Occasionally Com-

fortable Patients (N = 10) and Always Comfortable Pa-

tients (N = 4). Patterns of interaction with Occasionally

Comfortable Patients are visually synthesized in Figure

1 and basic descriptive statistics for this group are pre-

sented in Table 1. Basic descriptive statistics for Always

Comfortable Patients are summarized in Table 2.

Over 71 percent of the patients studies suffer from

some forms of stigmatization. In relative terms, men

suffer from stigmatization slightly more than women

(75% versus 66.7%). Yet, women over 55 years of age

experience stigmatization in slightly higher terms that

men of the same age group. Intrusion is the source of

stigmatization for the majority of patients and impacts

men and women equally. Older men experience stigma-

tization from sympathy more than women of the same

Size of Group

Small Large

Intrusion Uncomfortable Uncomfortable

Sympathy Comfortable Comfortable

Uncomfortable

Types of Interaction Postures

Benign

Neglect

Comfortable

Uncomfortable Comfortable

Figure 1. Patient-secondary group interaction by size of group

A. Bonanno et al. / HEALTH 2 (2010) 418-428

423

and types of responses to disfigurement for Occasionally

Comfortable Patients.

Table 1. Basic characteristics and patterns of interaction of

Occasionally Comfortable Patients, N = 10 (total patients

studied N = 14).

Gender

Men

75%

Women

66.7%

Total

71.4%

Age and

Gender

Men > 55

66.7%

Men < 55

33.3%

Women > 55

75%

Women < 55

25%

Total

70%

Total

30%

Intrusion

50%

Men > 55

66.7 %

Men < 55

33.3 %

50%

Women > 55

100%

Women < 55

50%

Sympathy

33.3%

Men > 55

50%

Men < 55

50%

25%

Women > 55

Women < 55

100%

30%

Benign Ne-

glect

16.7%

Men > 55

100%

Men < 55

25%

Women > 55

100%

Women < 55

20%

Table 2. Basic characteristics of Always Comfortable Patients,

N = 4 (total patients studied N = 14).

Gender

Men

25%

Women

33.3%

Total

28.6%

Age and

Gender

Men > 55

100%

Women > 55

100%

Total

100%

age group while older women experience benign neglect

relatively more than men. Due to the limited size of the

sample and the qualitative design, these statistics are

reported only as an illustration of possible quantitative

trends. More pertinent findings are presented below in

the discussion of the qualitative analysis.

4.1. Occasionally Comfortable Patients

Occasionally comfortable patients are individuals who

experience different levels of comfort in interaction. In

some situations they do not feel stigmatized, but other

interactions constitute the contexts within which this

discomfort emerges. Intrusion in interaction in large and

small groups always generates uncomfortable outcomes.

Here patients are stigmatized. Sympathy is associated

with comfort in interaction in small groups and produces

varying patterns in the case of large groups. Benign ne-

glect produces comfort in interaction within large groups

and varying patterns in the case of small groups.

4.1.1. Intrusion

This is a situation in which patients feel uncomfortable

interacting within small and large groups alike. Members

of interacting groups grant disfigured individuals the

particular status of “different” and proceed to construct

an interaction in which this condition is reinforced. Pa-

tients are noted because their different appearance. They

are drawn in interaction patterns in which their status of

different is constructed and reinforced through unwanted

attention. People’s questions, stares, remarks constitute

elements that build a view of disfigurement that is stig-

matizing. While varying, patients’ responses are charac-

terized by dissatisfaction with the interaction. Interaction

in large and small groups alike provides the terrain for

the development of this constructed stigmatization.

4.1.1.1. Small Groups

Joy provides an account of this type of interaction with

small groups. She says:

“Sometimes I notice that people…can tell that this

side of my face does not make the same movements

[than the other side]. They are probably aware that there

is something strange about that woman…The first time

that I took my six year old to dancing—my six year old

granddaughter, she dances every Wednesday and then

she is at church afterwards. The children have special

things going on after dancing at the church… My

daughter works a lot and so that Wednesday is mine. I

take them and do all of that kind of thing. Well, the first

few times when I was taking her to dancing, I sit and

wait… can’t go off and leave her, wait in the room with

the other parents and I could tell that some of the moth-

ers were looking at me strangely, not in a mean way or

anything like that but more curious, like there’s some-

thing strange about that woman. What could it be? And

generally, I have found that if I feel like somebody is

making me feel uncomfortable… I’ll go ahead and say

something.”

She adds:

“I went to a wedding shower for one of my daughter’s

friends who I didn’t know very well and there were a lot

of young women there that I did not know well… and I

was uncomfortable there. I felt like the majority of them

probably did not know that I had this problem [cancer

generated facial disfigurement] and I’m sure they were

wondering… that was an uncomfortable day…. I didn’t

A. Bonanno et al. / HEALTH 2 (2010) 418-428

424

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really enjoy that.”

4.1.1.2. Large Groups

Arthur provides an instance of the interaction between

patients and large secondary group. He says:

“I feel like everybody’s always staring at me. It is

strangers. [I have negative feelings] when dealing with

strangers. Probably the worse is in restaurants. Because

you are sitting there for a long time and the people

around you are all eventually looking at you or you feel

they are. [It is also the same] when you walk past some-

body in a store or on the street or something… They

stare at you… It is very crude and insensitive and it

makes me skittish towards other people… it makes me

feel very uncomfortable…I don’t go out very much

anymore.”

Janet adds:

“When people keep staring at me and pretend they are

not looking at me… It bothers me. Most adults—they

will look at me. They all notice, I’m sure. A lot of them

try to pretend… But it happens everywhere. The worst is

at places like Super Centers. That where I found that

people are most rude. It also bothers me that people let

their kids be so rude, particularly big kids…. They run

around you in front of me and go ‘she doesn’t have and

eye! Look, look!’ Then I want to smack them. I want to

tell them ‘you are very, very rude.’”

4.1.2. Sympathy

Sympathy creates interaction patterns that are dissimilar

for small and large groups. In small groups, data reveal

that sympathy engenders comfortable interaction be-

tween disfigured patients and acquaintances. The latter’s

statements and actions are intended and perceived as

supportive and contribute to the construction of a situa-

tion in which disfigured patients find themselves at ease.

The analysis indicates that varying patterns define the

interaction between patient and members of large groups.

Sympathy shapes positive interaction as people’s support

is employed to construct advantageous conditions for

patients. Instrumentally, patients use this support even in

situations in which it is not needed. Simultaneously, pa-

tients also feel uncomfortable when sympathy transcends

the necessary. They feel that they their disfigurement is

constructed as a grater disadvantage than it actually is

and/or a situation that creates undeserved respect. In this

instance, overt sympathy becomes a negative factor in

the construction of interaction. It is important to note

that sympathy is also associated with the existence of

cancer. In some instances, interacting individuals display

sympathy to patient primarily because of their status of

survivors.

4.1.2.1. Small Group

Lisa provides evidence of a positive interaction with

small groups. She says:

“Nobody tells me anything. The only thing is they ask

me what happened, you know, what is wrong. That’s the

question. Then I have to tell them that I had surgery and

I had cancer and I had a tumor… This is friends, friends

that I haven’t seen in a long time and I happen to meet in

a store while I’m shopping, people that I haven’t seen in

a long time… they will ask questions… and when I ex-

plain to them what happened everybody is nice. They

just want to know what had happened to me and they

don’t make [comments or remarks], not at all, everybody

is nice.”

4.1.2.2. Large Groups

Sympathy in interaction with large groups engenders a

variety of results that include both comfortable and un-

comfortable situations.

Tom states: “Depends on whether or not I’m wearing

my prosthesis, the black patch or the medical patch and I

get different reactions for each of those circumstances.

When I’m wearing my prosthesis out in public… they do

not know that I had surgery. If I wear it … on the street,

in the store, in front of a group of people, at church or in

a meeting, if they do not know I had surgery they still do

not know I had surgery. [Because it is difficult to wear

my prosthesis continuously]5, I wear my black patch.

When I wear my black patch, I get better service. If I

ride a plane… people treat me differently… they are

sympathetic, overtly so… This is a person with a visual

problem, we’ll treat him differently and they do…. I

think they feel sorry for me… They seem to be more

sympathetic towards me and more ready to help me in

stores, primarily in store settings or at the library or

other public places. When I’m out in public service areas,

the service that I receive appears to be somewhat more

magnanimous… I’m going to take advantage of this

thing as much as I can.”

But he also indicates: “Sympathy is good, but at times

I feel that I don’t need it at all. I can do things on my

own and do not need any help.”

Mary says: “I’m very self-confident … around others

because more and more people are very receptive of

cancer survivors. So if you had cancer and you are a

survivor, then people are very supportive…. I could be a

horrible person (I’m not a horrible person) and they

would be like ‘oh, that’s ok if you are a cancer survi-

vor…. People at work have been very supportive… no-

body has been negative about my appearance…. They

simply ask what happened to you.”

4.1.3. Benign Neglect

5This patient informs us that wearing the prosthesis creates a number

of problems. There are problems associated with skin irritation where

the prosthesis attaches to the face. When the skin is irritated, the dis-

comfort forces the patient to wear either a black patch or a medical

atch. Addi

ionally, there are problems associated with the patients’

activities. Wearing the prosthesis causes severe headaches when trav-

eling by plane. Discomfort is also felt when pursuing outdoor activities

or exercising.

A. Bonanno et al. / HEALTH 2 (2010) 418-428

425

Benign neglect refers to situation in which interacting

individuals did not pay particular attention to patients. In

the case of interaction with small groups, data show that

varying patterns of interaction are possible. In some in-

stances, lack of interests on the part of interacting indi-

viduals is felt and acted upon in positive terms. Disfig-

ured patients do not feel stigmatized. Simultaneously,

though, similar situations engender opposite interaction

patterns as patients feel uncomfortable in the absence of

attention paid to them. The fact that interacting indi-

viduals “ignore” patients is not necessary an indication

of comfort in interaction. In the case of interaction with

large groups, benign neglect generates comfortable in-

teraction patterns. The size of the group is a condition

that allows patients to pass unnoticed and this situation

facilitates the manner through they interact with this

group of strangers.

4.1.3.1. Small Groups

Following are a few instances of the consequences of

benign neglect in interaction with small groups.

Carl says: “I have not noticed anything. I don’t think

people feel sorry for me any more or any less. I think

that still they see me as Carl… When I’m with a small

group of people, I don’t see anyone doing anything dif-

ferently for me… They treat me the same as always…

When I go shopping people look at me… it doesn’t feel

good but I don’t let it bother me, I don’t feel like I’m

less of a human. I don’t have to look down like I’m

ashamed to look them in the face, or like they are going

to reject me or anything like that…. It bothers me

though.”

Ron states: “I generally try to avoid being seen in a

prominent position… I really do believe that I have

learned to accept it [my disfigurement], but I do realize

that it’s noticeable to people and that it’s pretty obvi-

ous. … I felt good about myself before my cancer. Now,

I look in the mirror and I’m missing a part that’s very

important to your looks…people at work tell me ‘I don’t

even notice that your eye is missing, because I’m so

used to you…. It bothers me, but I accept it.”

4.1.3.2. Large Groups

Joy provides an instance of benign neglect in interaction

with large groups. She says:

“We [my husband and I] go to [college] basketball

games. We have a lot of those here. At the basketball

game is different because everyone is so intent on what

[the players] are doing what they are watching that they

do not pay attention to anybody, because I mean, they

are glued on what is going on on the court so I don’t

notice people reacting to me…. I’m pretty confident

interacting with people except when I need to meet new

people… I used to love meeting new people. I don’t

really enjoy that so much anymore… but I like to be in a

large crowd when people don’t notice you.”

4.2. Always Comfortable Patients

Always comfortable patients are individuals who do not

experience problems interacting in small and large groups

alike. They are well adjusted to their disfigured status

and, while they encounter behavior that could lead to

enacted stigmatization, the interaction does not affected

by them. As episodes of enacted stigmatization are quire

rare, the lack of felt stigmatization denotes

non-stigmatizing interaction patterns. Basic statistics

about this group are summarized in Table 2. As it can

bee seen from that table, no relevant differences seem to

exist in terms of patients’ age and gender.

Fred says: “I feel no difference the way that people

treat me… I don’t see any difference… when we go to

the shopping mall, when we go to the restaurant, when

we go anywhere. I see no difference in the way I’m

treated now and the way I was treated five years ago

[before surgery]…. I have no problems with the way I

look whenever I’m meeting anyone. It’s not something

that I think about and it’s something that I don’t even

consider…. I get some sympathy because I’m a cancer

survivor, but this has very little to do with the way I

look.”

Frank continues: [when I interact with people I’m

very confident] Oh, yeah, I think so. I went back to work

on a full-time job where I used to travel a lot and go to a

contractor’s facility in [name of city]… all the time and

meet with people, have meetings, give briefings and

so, … I don’t have any issue with it and there never

seemed to be an issue with those people I deal with.”

[When I go out] “the only people that tend to react are

kids. And they’ll look at you, and it is just like at my

wife’s church preschool class. I went to see her at her

class today and went to lunch after that, and the kids

came up and just looked and said, hey, how you doin’?

And she said, oh, my husband’s a pirate… they said,

okay, great!... I haven’t really had a negative situation so

far…. When I had my knee operation the anesthesiolo-

gist that did the knee operation came to my house during

Halloween and I answered the door and he was standing

there with his child, and he said: you’re really getting

into the part, aren’t you? Thinking that I had an eye

patch on for Halloween. I said, nope, I really have to

have an eye patch. He said: Oh, I’m sorry. That’s the guy

I had four months later to be my anesthesiologist on my

knee surgery, and he mentioned how he had met some-

one with an eye patch. I said that was me. He said: Oh, I

feel so bad about it. I said: don’t worry, it happens all the

time. You know, you get dressed up for something or

whatever… but… it doesn’t bother me and in fact I

called the guy about a part on a pool the other day, told

him my name, he said: yeah, you are the guy with the

bad eye – wait, you don’t mind that I said that, do you?’

And I said, no, I don’t mind that you said that.”

A. Bonanno et al. / HEALTH 2 (2010) 418-428

426

Openly accessible at

5. CONCLUSIONS

In terms of the interaction between facially disfigured

cancer survivors and secondary groups, this study identi-

fied the existence of two groups of patients. When inter-

acting with strangers and acquaintances these cancer

survivors can be grouped into always comfortable pa-

tients and occasionally comfortable patients. Always

comfortable patients are patients who do not experience

problems because of their disfigurement and their inter-

action with small and large groups does not lead to felt

stigmatization. While episodes of enacted stigma may

occur, they tend not to affect these well adjusted indi-

viduals, their counterparts, and interaction.

The group of patients classified as occasionally com-

fortable presents more complex patterns of interaction

with secondary groups. This group experiences uncom-

fortable and stigmatizing interaction patterns in specific

instances. At the same time, they experience non consis-

tent or comfortable (i.e., not stigmatizing) patterns of

interaction in other situations. This is the group of pa-

tients that requires the most attention as their interaction

with secondary groups varies according to the size of the

group.

These findings add to the existing literature in a num-

ber of ways. First, they indicate that strangers do display

varying patterns of interaction with the facially disfig-

ured. Accordingly, the statement that “the reaction of

people on the streets or in the neighborhood is …. con-

sistent: they stare at most patient with facial defect” [39]

(see also [15,16]) needs to be revised. This study dem-

onstrates that the behavior of strangers is much more

complex than previously recorded and it entails a num-

ber of distinct interaction patterns.

Second, this research clarifies questions raised by

previous research on the interaction between facially

disfigured cancer survivors and acquaintances [39]. Data

on the various patterns of interaction within small groups

demonstrate the complexity of interaction patterns ex-

isting between patients and acquaintances. Ultimately,

acquaintances are the source of stigmatization and sup-

port alike as they intrude in the everyday existence of

patients but also provide sympathy to cancer survivors.

Third, these findings contribute to the understanding

the issue of the relationship between disfigurement and

cancer. The existence of cancer mitigates the negative

effects of facial disfigurement. It creates a process of

interaction in which people display support to patients

because they suffered from cancer. Once people learn

that the patient’s facial disfigurement is cancer related,

they tend to be overtly supportive regardless of other

conditions.

Finally, this research underscores the importance of

the reading of the social consequences of cancer gener-

ated facial disfigurement in relational terms. The social

consequences of facial disfigurement emerge as out-

comes of interaction processes. As such, they involve

patients and other segments of society as they interact in

various social spheres. While the study of the manner

through which individuals respond to disfigurement re-

mains important, it is through the process of interaction

that stigmatization or lack of it are constructed.

Three overall recommendations emerge from the

analysis presented in this study. First, patients should be

warned about the occurrence of possible difficulties

when interacting in large and small groups alike. In this

respect, they should be prepared to the possibility of

experiencing episodes of intrusion, sympathy and benign

neglect when interacting with small and large groups of

acquaintances and strangers. Second, it appears desirable

that interacting groups be sensitized about the patterns of

interaction identified above. While complex, this solu-

tion should be considered as educational programs are

discusses and implemented at various levels. Finally, the

issue of the social consequences of cancer generated

facial disfigurement should be studied with an interdis-

ciplinary approach. In this context, it would be desirable

to include a sociological component that would allow

investigators to explore the collective dimension of the

social construction of facial disfigurement and stigma.

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