Educational Needs and Altered Eating Habits

Following a Total Laryngectomy

Terry A. Lennie, PhD, RN, Sharon K. Christman, MS, RN,

and Rosemary A. Jadack, PhD, RN

Purpose/Objectives: To describe eating-related experi- Key Points . . .

ences and informational needs of people following total
laryngectomies.
Design: Descriptive study.
Setting: Internet-based laryngectomy support group in
the United States.
Sample: 34 people with a laryngectomy (68% total laryn-
gectomy, 29% with total plus radical neck dissection, and
3% with partial laryngectomy with radical neck dissection):
29 males, 5 females; mean age of 62 years.
Methods: Members of a laryngectomy support group
completed a Food Eating Experiences and Diet Question-
naire designed by the investigators. Both quantitative and
qualitative data were collected.
Main Research Variables: Effect of laryngectomy on
food choice, eating habits, and overall enjoyment of eat-
ing; perceptions of teaching received from healthcare pro-
fessionals regarding potential eating difficulties as a result of
laryngectomy.
Findings: 90% of the participants experienced a change in
one or more aspects of eating. The most prominent changes
were decreased sense of smell, decreased taste, decreased
enjoyment of eating, and an increase in the length of time
required to eat meals. Most participants were not satisfied
with the information they received from healthcare profes-
sionals. Topics requiring emphasis during patient teaching
were identified from participants’ comments.
Conclusions: Total laryngectomy produced significant
changes in factors related to eating that can affect nutri-
tional intake and quality of life. Participants reported that
most healthcare providers did not adequately prepare
them for potential alterations in eating that can occur fol-
lowing a total laryngectomy.
Implications for Nursing Practice: Data from this study
can be used to raise awareness of incidence and severity
of changes in eating that occur after total laryngectomy
and to improve patient preparation to cope with these
changes.
ancer of the larynx strikes more than 10,000 people in
➤ The incidence of long-term alternations in eating and nutri-
tion following total laryngectomy may be higher than many
clinicians perceive.
➤ Healthcare providers have not adequately prepared the large
number of patients undergoing total laryngectomy for the al-
terations in eating that occur following this surgery.
➤ Healthcare professionals working at large referral centers
may find it particularly important to routinely verify that pa-
tients have received adequate teaching with respect to alter-
ations in eating and nutrition following laryngectomy.
➤ The most helpful intervention may be referral to a support
group, as the task of solving eating-related problems follow-
ing total laryngectomy can be made easier by consultation
with others who have experienced similar problems.
Ossof, 1997). Changes in swallowing, smell, and taste, how-
ever, also accompany laryngectomy (Anderson, 1998; Blood,
Luther, & Stemple, 1992; Gilmore, 1994). These changes re-
sult in alterations in dietary habits and diminished enjoyment
of food that impact nutritional status and overall quality of life
(van Dam et al., 1999).
Currently, laryngeal cancer is treated by radiation therapy,
chemotherapy, and surgery (ACS, 2001). Radiation therapy is
used alone when the tumor is small and minimally invasive.
Long-term consequences of radiation treatment include dryness
in the mouth from damaged salivary glands and decreased
Terry A. Lennie, PhD, RN, is an assistant professor, and Sharon K.
Christman, MS, RN, is a doctoral student, both in the College of
Nursing at Ohio State University in Columbus. Rosemary A. Jadack,
PhD, RN, is an associate professor in the School of Nursing at the

C the United States each year (American Cancer Society

[ACS], 2001), some of whom will require a laryngec-
tomy as part of their treatment. The best described long-term
consequences of a laryngectomy are those related to alter-
ations in verbal communication (Simpson, Postma, Stone, &
University of Wisconsin-Eau Claire. This study was funded by a seed
grant from The Ohio State University, College of Nursing in Colum-
bus. (Submitted May 2000. Accepted for publication November 30,
2000.) (Mention of specific products and opinions related to those
products do not indicate or imply endorsement by the Oncology
Nursing Forum or the Oncology Nursing Society.)

LENNIE – VOL 28, NO 4, 2001

667
sense of taste from damaged taste buds. In addition, radiation
increases the risk of developing dental caries (ACS).
Surgery alone, or in combination with radiation or chemo-
therapy, is the most common treatment option for tumors that
cannot be destroyed solely by radiation. The extent of surgi-
cal excision is determined by both the size and location of the
lesion. Laser surgery may be used for small tumors that are
limited to the vocal folds. A partial laryngectomy is used for
tumors involving only one of the vocal folds, while a hemila-
ryngectomy is used for lesions involving half of the larynx. If
the lesion does not involve the vocal folds, a supraglottic la-
ryngectomy may be performed in which tissues and structures
above the vocal folds are removed, while preserving the true
vocal folds. These surgical procedures result in removal of the
cancer with preservation of the vocal folds and, for the most
part, do not require tracheostoma placement.
A total laryngectomy is performed for stage III and IV la-
ryngeal and hypopharyngeal (esophageal) cancers. During
this procedure, the entire larynx is excised. In addition, the
trachea is severed from the pharynx and externalized at the
base of the neck via a permanent stoma through which people
breathe, cough, and sneeze. This results in complete discon-
nection of the oropharynx and nasopharynx. Consequently,
the ability to inhale air through the nose or mouth is lost. More
advanced cancers also may require radical neck dissection in
which lymph nodes along with several neck muscles, includ-
ing the sternocleidomastoid and strap muscles, and veins are
removed. Additional tissues in the bones, neck, and pharynx,
including the tongue, are removed when the lesion has spread
to these areas.
The consequences related to alterations in verbal commu-
nication as a result of a total laryngectomy have been well-
described in the literature (Simpson et al., 1997). The changes
in swallowing, smell, and taste that also accompany total la-
ryngectomy have received considerably less attention in both
the clinical and research literature (Anderson, 1998; Blood et
al., 1992; Gilmore, 1994). Many people have reported diffi-
culty in adjusting to eating-related changes. They need more
time to eat following laryngectomy, and certain foods, such as
meats or breads, are difficult to swallow and can cause ob-
struction of the esophagus. Many individuals report an in-
crease in gastrointestinal problems following surgery, includ-
ing stomach rumblings, distention, and flatulence (Graham,
1997).
Although total laryngectomy does not destroy the sense of
smell, it does interfere with the olfactory process. The creation
of a permanent tracheostoma prevents air from being drawn
over receptors in the nasal passages, which is necessary for
olfaction (Heald & Schiffman, 1997). Eighty percent to 90%
of individuals report losing their sense of smell following la-
ryngectomy and more than half report having a reduced abil-
ity to taste (Gilmore, 1994). Another potential problem related
to eating is caused by the type of intervention used to reestab-
lish oral communication. One common procedure is tracheoe-
sophageal puncture. This surgical procedure creates an open-
ing through the back wall of the trachea into the esophagus.
A small prosthesis is inserted and is used to divert air from the
trachea into the esophagus to vibrate and produce sound that
can be shaped into words and sounds. A poorly placed or
poorly functioning prosthesis, as well as coughing, can result
in aspiration or leaking (Casper & Colton, 1993). Combined,
these effects of total laryngectomy can result in alterations in
ONF – VOL 28, NO 4, 2001
668
dietary habits and diminished enjoyment of food that affect
nutritional status and overall quality of life (van Dam et al.,
1999).
The majority of patient-focused literature is written from
the perspective that difficulties related to eating are minimal
or completely resolve over time following laryngectomy
(Keith, 1991). This perspective may result in clinicians mini-
mizing the impact of eating-related difficulties and, subse-
quently, not adequately preparing patients and their families
for potential changes in eating. A recent study by Zeine and
Larson (1999) demonstrated that this indeed may be the case.
As part of a survey of pre- and postoperative counseling,
laryngectomees and their spouses were asked to rate the infor-
mation received regarding physiologic changes (e.g., loss of
taste, changes in feeding). Sixty-one percent of the laryngec-
tomees and 81% of spouses indicated that insufficient infor-
mation was provided about eating-related issues. Because
participants were asked only to provide ratings of information,
determining what additional data participants would have
liked to receive is not possible.
In summary, it appears that many people may experience
significant alterations in eating following total laryngectomy
(van Dam et al., 1999) and that many healthcare providers
have not adequately prepared people for these changes (van
Dam et al.; Zeine & Larson, 1999). Additional data are needed
that describe these experiences and outline the information
necessary to assist people in coping with alterations in eating
related to total laryngectomy.
The purpose of this study was to describe the eating-related
experiences and informational needs of people with a total
laryngectomy. The research questions were
• What was the effect of total laryngectomy on eating pat-
terns, enjoyment of eating, and food choice?
• Which healthcare professionals provided information re-
garding alterations in eating and nutrition following total la-
ryngectomy?
• How satisfied were participants with the information re-
ceived from healthcare providers regarding alterations in
eating and nutrition following total laryngectomy?
• What were the characteristics of information that produced
low and high satisfaction ratings from participants?
• What information did participants feel should have greater
emphasis during patient teaching about alterations in eating
and nutrition following total laryngectomy?
Methods
Sample Recruitment
Thirty-four people with laryngectomies were recruited
from the online WebWhispers laryngectomy support group.
WebWhispers is a national Internet support group for people
who have undergone a laryngectomy. The site lists 183 people
with a laryngectomy and caregivers as members. Since the
site’s development in 1996, 45 medical professionals, ranging
from otolaryngologists, speech-language pathologists, physi-
cians, and nurses also have become members of the support
group. All members with a total laryngectomy were e-mailed
an invitation to participate and a description of the study. In-
terested individuals received a consent form and the survey in
the mail. All surveys received were assigned numbers to en-
sure confidentiality. Actual names were not associated with
the surveys. After data collection was complete, participants
received a follow-up letter thanking them for their participa-
tion and encouraging them to contact the researchers if they
had any questions. The Ohio State University Behavioral and
Social Sciences Institutional Review Board approved the
study.
Instruments
Background and demographic information: Background
data included gender, marital status, age, race, education, and
work history. Questions regarding living arrangement, chil-
dren, and average household income were included. Partici-
pants were asked to indicate the date of surgery, type of sur-
gery performed, length of hospital stay, presurgical diagnosis,
and whether they received radiation treatment.
Food, Eating Experiences, and Diet Questionnaire: The
investigators designed the Food, Eating Experiences, and Diet
(FEED) Questionnaire to describe experiences related to food
and eating postlaryngectomy and to determine respondents’
perceptions of the instructions and counseling they received
from healthcare providers regarding nutrition and potential
eating difficulties as a result of laryngectomy and related treat-
ments. The instrument was pilot tested on five people with a
total laryngectomy. Feedback regarding clarity and content
was used to make modifications to the instrument prior to the
study. The instrument consisted of five sections. The first
three sections focused on potential changes related to differ-
ent aspects of eating. The fourth section measured perceptions
of hunger and appetite. The fifth section was designed to ob-
tain perceptions of information received from healthcare pro-
viders regarding potential changes in eating following laryn-
gectomy.
Specifically, section 1 assessed changes in day-to-day eat-
ing-related phenomena. Twelve eating-related variables were
assessed (e.g., number of meals eaten per day, amount of food
eaten, snacks, hunger sensations, smell, taste, food desirabil-
ity, enjoyment of foods). Participants were asked to rate each
item compared to before their laryngectomy on a five-point
Likert scale from one (much less) to five (much more).
In section 2, participants used the same five-point Likert
scale to rate changes in desirability of 13 food types (includ-
ing red meat, poultry, fish, dairy products, vegetables, fruits,
breads, starchy foods, sweet foods, bitter foods, salty foods,
and alcoholic beverages) compared to before their laryngec-
tomies.
Section 3 included questions about how current eating hab-
its compared with eating habits prior to laryngectomies. Par-
ticipants indicated changes in the length of time spent eating
meals and whether they tended to avoid social gatherings
where food would be served. Participants also were asked to
list foods that they ate before the laryngectomy that they could
not eat at present and to describe why.
In section 4, participants were asked to compare their cur-
rent overall hunger (defined as physical sensations that signal
the need to eat) and appetite (defined as the psychological de-
sire, urge for specific foods) to before laryngectomy on sepa-
rate 10 cm visual analog scales (VAS), ranging from much
worse since laryngectomy to greatly improved since laryngec-
tomy. The VAS has been shown to be a valid and reliable in-
dicator of subjective desire to eat (Silverstone, 1982).
Section 5 provided an opportunity for participants to evalu-
ate the information/counseling received from healthcare pro-
viders regarding nutrition, and potential eating difficulties
LENNIE – VOL 28, NO 4, 2001
669
resulting from laryngectomy and related treatments (e.g., ra-
diation). Participants identified all healthcare providers who
gave nutrition- or eating-related information by profession
(e.g., physician, nurse, dietitian, speech pathologist, dentist,
social worker). For each provider listed, participants described
the information given. Next, they rated their level of satisfac-
tion with that information on a five-point Likert scale from
one (not at all satisfied) to five (very satisfied). Additionally,
participants were asked to describe what information was
most helpful, what was least helpful, and what information
they wish they had been told. Finally, participants identified
sources of information other than healthcare providers that
they found helpful.
Space was provided in each section for participants to make
comments or write explanations of their answers. Thus, both
quantitative and qualitative data were collected in each section
of the instrument.
Data Analysis
Quantitative data are presented as frequency counts, per-
centages, or means and standard deviations and were analyzed
using SPSS®, the Statistical Package for the Social Sciences,
version 10.0. Between-group comparisons were made by one-
way analysis of variance. An alpha of 0.05 was considered
statistically significant.
Content analysis (Krippendorf, 1980) was used to analyze
responses to the following open-ended questions related to in-
formation received from healthcare providers: (a) which type
of healthcare professionals provided information, (b) what
type of information produced a low level of satisfaction, (c)
what type of information produced a high level of satisfaction,
(d) what information was considered least helpful, and (e)
what information was considered most helpful. Responses to
the open-ended questions were written on index cards. Re-
searchers sorted the index cards for each open-ended question
into coding categories that shared similar broad themes. Then,
the categories were named and an independent rater resorted
the index cards into the named categories. The group of rat-
ers met to discuss disagreements with coding and revise the
coding categories. Once the categories were revised, two in-
dependent raters coded the cards using the revised categories.
The percent agreement between the two raters on all responses
to the open-ended questions was greater than 90%.
Results
Sample Characteristics
Thirty-four people returned completed questionnaires—an
83% return rate of those who expressed interest in participat-
ing in the study. Eighty-five percent of the participants were
male, with a mean age of 62 years (range 47–76) and an av-
erage of five years since laryngectomy (range 0.25–16 years).
Eight percent of participants had some college or graduate
school along with an average household income greater than
$30,000. Most (82%) were either married or living with a
partner. The majority (62%) were retired, although 32% still
worked at least part-time. Sixty-eight percent of participants
had undergone a total laryngectomy, 29% had a total laryn-
gectomy with a radical neck dissection. One individual (3%)
with a partial laryngectomy and radical neck dissection was
included, as difficulties with eating were considered to be
similar.
Eating Patterns Table 2. Effect of Laryngectomy on Enjoyment of Foods
For most participants, perceptions of hunger and appetite Number
were not affected by laryngectomy as the mean ratings of Rating Indicating Item
hunger (4.5 ± 1.7 cm) and appetite (4.6 ± 1.9 cm) were near
—
the middle of the 10 cm VAS, indicating no change following Food Item X SD n %
laryngectomy. Similarly, 31 (92%) participants indicated the
number of meals eaten per day did not change following la- Less enjoyment
Red meat 2.19 0.90 8 24
ryngectomy. Ten respondents (29%), however, reported a de-
Bitter foods 2.71 1.10 9 27
crease in the amount of food eaten per day. An equal number Breads 2.80 0.95 8 24
of participants (n = 10) reported a decrease in the intensity of Sweets 2.84 1.00 9 27
hunger sensations. Not surprisingly, most participants who in- Dairy/cheese 2.84 1.00 8 24
dicated decreased hunger sensations were the same as those
Same or more enjoyment
reporting a decrease in the amount of food eaten per day.
Vegetables 3.06 0.76 3 9
Forty percent indicated they had eaten fewer meals in restau- Potatoes/pasta 3.09 0.73 3 9
rants since their laryngectomy. Dairy/milk 3.13 0.79 3 9
Total laryngectomy had the greatest impact on time re- Fish 3.19 0.86 3 9
quired to eat a meal. Half of the participants indicated it took
significantly longer to eat lunch and supper since their laryn- N = 34
gectomies. On average, these participants required an addi-
tional 10 minutes to eat lunch and an additional 13 minutes to
eat supper after their laryngectomy (see Table 1). eaten, participants who completed section 3 of the FEED
Questionnaire were divided into two groups: those who had
Enjoyment of Eating and Food Choice undergone laryngectomy within the past two years (n = 8)
Forty-two percent of participants indicated a decrease in and those who had undergone laryngectomy more than two
their overall enjoyment of eating since their laryngectomies. years prior (n = 22). Between-group comparisons of the
One respondent described the change as, “I no longer live to perceived influence of taste, smell, and ability to swallow
eat, I eat to live. My overall eating habits have remained the on food intake were made using ratings from five-point
same, but I enjoy it less.” The desire to try new foods was Likert scales ranging from one (no influence) to five (great
reported to be lower by 41% of participants, whereas 35% influence). Of the factors tested, only the influence of al-
reported a decrease in enjoyment of eating new foods. As tered taste on food intake was found to differ between
shown in Table 2, average enjoyment of five food types de- groups. Those whose laryngectomy was performed less than
creased after laryngectomy, and enjoyment of four other food two years ago rated taste—
as having a moderate influence on
types remained the same or increased. amount of food eaten (X = 2.7 ± 1.7), whereas those whose
Alterations in sense of taste and smell following total laryn- laryngectomy was more than—
two years ago rated taste as hav-
gectomy appeared to be two primary reasons for decreased ing almost no influence (X = 1.1 ± 1.1; t [28] = 2.7, p < 0.05).
enjoyment of eating. The majority of participants (89%) rated Participants were asked to rank a list of eight items accord-
their sense of smell as less effective than before surgery or ra- ing to their importance in deciding whether to eat a particular
diation treatment. Sense of taste also was affected by laryn- food. The average rank for each item is listed in Table 3. Taste
gectomy, as 63% expressed a diminished sense of taste. Par- of the food was rated either as the most or second most impor-
ticipants—with decreased taste rated their overall enjoyment of tant factor by the greatest number of people (n = 18). Nutri-
eating (X = 2.29 ± 0.72) — significantly lower than those who tional value also was highly rated with 18 people considering
reported no difference ( X = 3.11 ± 0.78; t [28] = –2.9, p < this to be either the most or second most important factor in
0.05). choosing a food. The smaller standard deviations of these two
A number of respondents stated that alterations in taste
and smell improved by the second year following laryngec- Table 3. Average Rating of Importance of Factor in
tomy. Therefore, to determine whether time since laryngec- Choosing a Food
tomy was related to factors influencing amount of food
Rating a
—
Table 1. Comparison of Amount of Time in Minutes Factor X SD
Required to Eat Meals
Taste 1.84 1.2
Before Laryngectomy After Laryngectomy Nutritional value 2.38 1.4
Easy to swallow 3.14 2.1
Meal na Minutes SD Minutes SD Easy to chew 3.40 1.8
Appearance 3.70 1.9
Breakfast 13 12.1 8.5 28.1 15.8 Preparation time 4.60 2.1
Lunch* 16 22.5 9.8 33.1 14.4 Time required to eat food 4.75 2.2
Dinner* 17 27.9 13.9 40.6 18.0 Cost 5.76 2.3
a a
Number of participants who indicated a change in the length Rating: 1 = most important
of time required to eat meals since laryngectomy. Note. Participants were allowed to rank items as equally impor-
*Paired t-test, p < 0.05 tant.

ONF – VOL 28, NO 4, 2001

670
factors in comparison to the remainder also indicate a greater
consensus of the importance of these factors among partici-
pants. The mean number of years since laryngectomy was 5.4
for those who ranked taste as the most important factor,
whereas the mean years since laryngectomy was 3.2 for those
who ranked ease of swallowing as the most important factor.
Information Given by Healthcare Providers
Twenty-seven of the 34 participants provided data regard-
ing information given by healthcare providers. A total of 52
providers were listed as sources of information. Eight partici-
pants identified only one source of information, 10 identified
two sources, and nine identified three providers as sources of
information. Physicians/surgeons were the most common
sources of information (n = 26). Nurses (n = 11) were the next
most common source, followed by speech pathologists (n =
7), dieticians (n = 6), and dentists (n = 2). The average level
of satisfaction with information received by profession was
2.8 for physicians, 3.1 for nurses, 3.7 for speech pathologists,
and 3.2 for dieticians. These differences in satisfaction ratings
among professions were not statistically significant. There-
fore, responses were categorized according to level of satis-
faction, regardless of professional providing information, to
determine the characteristics of information that produced the
lowest and highest participant satisfaction ratings.
Information Producing a Low Level of
Satisfaction
Respondents indicated a low level of satisfaction with infor-
mation received from 19 (36%) of the providers listed. Content
analysis of the 19 opened-ended descriptions of this informa-
tion revealed two themes. The first and most prominent theme
was that the information provided was either insufficient or
incomplete. For example, one respondent noted that he received
no teaching. “Any information would have been 100% more
than what I got. I was discharged the day before Thanksgiving,
and the only nutritional information I was given was ‘make sure
you chew your turkey well.’” A second respondent stated that
he wished he “had been told that it would take a long time to
recover most of the taste changes and some would be perma-
nent.” A third respondent wrote the following about his inter-
action with a dietician. “Saw dietician in the hall one day, and
she asked how I was doing and was I eating. I said I always eat
and she said keep it up! That was my consultation.” Another
respondent wrote the following about the long-term impact of
the limited information provided by her physician.
He just mentioned I should eat. But the bad thing was it
was so hard to swallow that I just lived on Jell-O® [Kraft
Foods, Rye Brook, NY] plus ice cream for about six
months. I wish they had talked more about nutrition. I
would have drank Ensure® [Abbott Laboratories, Abbott
Park, IL] or something for nutrition. I don’t think it was
too good eating Jell-O plus ice cream.
The second theme related to information being focused
only on changes in speech. An example of comments in this
category was: “I was so concerned about losing my voice and
having a stoma that I never realized the swallowing difficul-
ties, which were even more extreme after radiation.” This
theme was more directly addressed by another respondent
who described the information as having an “emphasis on
esophageal speech! Nothing on rehabilitation or diet!”
LENNIE – VOL 28, NO 4, 2001
671
Information Producing a High Level of
Satisfaction
Respondents indicated a high level of satisfaction with in-
formation received from 19 (36%) of the healthcare provid-
ers listed. Overall, the information in this category contained
a greater amount of detail than the information in the previ-
ous category. For example, one participant wrote the follow-
ing about his interaction with the nurse practitioner who
worked with his surgeon. “Nurse practitioner visited me in the
hospital daily—all types of information given, complete physi-
cal changes, and their effects. Was always able to contact her
after I was home to discuss anything.” Content analysis of the
18 open-ended responses revealed three general characteris-
tics of the information producing a high level of satisfaction.
First, participants were provided with specific information re-
garding eating-related changes to expect as a result of laryn-
gectomy, including loss of smell/taste, changes in swallowing,
and types of foods that might be problematic. Second, partici-
pants received information from multiple sources such as
pamphlets, recipes, and Web sites. Third, participants received
suggestions for how to cope with changes, such as swallow-
ing exercises and food supplements.
Information Identified as Needing Greater
Emphasis in Patient Teaching
In this study, participants were asked to describe (a) the
information they found least helpful, (b) the information they
found most helpful, and (c) the information they wish they
had been told. These data were compiled to develop a list of
information participants thought was important to provide to
people undergoing laryngectomy (see Figure 1).
Based on the number of comments, the topic that partici-
pants felt needed the most additional attention was recommen-
dations to cope with loss of smell and taste. The following
statement is an example of the importance participants placed
on providing this type of information. “One of the most frus-
trating experiences was the loss of my taste for two years.
Very happy it’s returned now. Sure wish they had paid more
attention to taste in the hospital.” Similarly, another respon-
dent wrote, “I would strongly recommend that people receive
far more information about taste—we are all affected to differ-
ent degrees, but at least the basics should be explained. I know
about nutrition—problem was finding things that tasted good.”
Other comments focused more on loss of smell. “I was unpre-
pared for the impact of losing aroma as a result of not breath-
ing thru my nose/mouth.”
The second topic most emphasized by participants was
importance of finding reliable sources of information and
solutions to problems as they emerge. Most participants stated
that they sought out information related to eating and nutrition
from sources other than healthcare providers. The most fre-
quently cited sources were ACS, laryngectomee Web sites,
books, and support groups such as WebWhispers and local
chapters of the International Association of Laryngectomees.
Two major functions of these sources were identified. First,
they served to reinforce patient teaching. This principle is
exemplified by the following statement from a participant,
“After surgery, I didn’t comprehend much or retain it. There
is a need to reinforce daily living instruction. I am still learn-
ing a lot from WebWhispers.” Second, these sources provided

Changes related to pleasurable aspects of eating
• Loss of smell/loss of taste: Relationship to flavor
• Strategies to season foods to enhance taste
• Extended time line after laryngectomy before improvement in
taste
• Importance of repeatedly trying foods, as taste can change
over time
Changes related to physical aspects of eating
• Potential change in types of food that can be eaten or are
palatable
• Importance of chewing food thoroughly
• Increase in length of time required to eat
• Alternate methods of food preparation that enhance taste
and ease swallowing
• Drink fluids while eating to moisten food and ease swallowing
• Alteration in social nature of eating, as people cannot talk
and eat simultaneously
• Unique problems with teeth, saliva, and swallowing related to
radiation therapy
Proper nutritional intake for recovery and overall health
• Use of food pyramid to plan diet
• Liquid nutritional supplements
Sources of additional information and importance of joining sup-
port groups
• International Association of Laryngectomees
http://www.laryngectomees.inuk.com/sites.html
• Web-based support groups (e.g., WebWhispers)
http://www.webwhispers.org
• American Cancer Society
http://www.cancer.org
• CancerNet (National Cancer Institute)
http://cancernet.nci.nih.gov/wyntk_pubs/larynx.htm
Figure 1. Topics Identified as Needing Greater Emphasis
During in Patient Teaching
Note. Figure contains only those topics that participants listed as
needing more attention and, therefore, is not a comprehensive
list of topics for patient teaching following laryngectomy.
practical solutions to problems. For example, one respondent
described the amount of assistance received from support
groups as “A great deal, particularly in the beginning when I
knew very little, and was able to benefit from the experience
of many laryngectomees who had ‘been there, done that.’”
The third topic most emphasized was the need for more
nutrition-related information. As one responded noted, “I feel
that nutrition should be up most on the list that should be
emphasized.” A second respondent expressed the impression
that “nutrition seems to be way down on the list at most medi-
cal schools, and with cancer patients, its almost like—let’s
don’t worry about what—just eat something.”
Discussion
To date, interventions for people undergoing a total laryn-
gectomy have focused primarily on issues related to altered
communication and airway maintenance. This study, how-
ever, demonstrates that clinicians also should focus on alter-
ations in eating because the incidence of these alterations is
higher than many clinicians might perceive. Ninety percent of
the participants experienced a change in one or more aspects
ONF – VOL 28, NO 4, 2001
672
of eating following laryngectomy. The most prominent of
these changes was a permanent decrease in the sense of smell.
Other alterations that a large portion of the participants expe-
rienced included decreased taste, decreased enjoyment of eat-
ing, less desire to try new foods, and an increase in the length
of time required to eat meals. Socialization during meals also
was affected because conversing while eating is difficult.
These alterations greatly affect the pleasurable and social as-
pects of eating that are recognized to be as important to qual-
ity of life as the functional aspects of eating are to providing
the body with adequate nutrients (Booth, 1994).
A large number of participants perceived the level of prepa-
ration for eating-related changes as inadequate. Similar to the
findings of Zeine and Larson (1999), a majority of participants
indicated they were not satisfied with the information received
regarding the effects of laryngectomy on eating and nutrition.
These results support van Dam et al.’s (1999) conclusion that
although considerable progress has been made in addressing
alterations in communication and pulmonary problems associ-
ated with total laryngectomy, the same is not true for difficul-
ties associated with taste, smell, and swallowing.
Patients who are referred to large medical centers for sur-
gery or follow-up treatment may be at highest risk for not re-
ceiving adequate information. In these cases, neither the refer-
ring nor treating center may take responsibility for teaching.
For example, one respondent in the current study wrote “they
told me I’d experience some loss of taste and smell, otherwise
I was on my own—surgery was in [a] different city.” Another
respondent noted that “treatments and follow-ups were in dif-
ferent cities. Therefore, things such as taste advice fell through
cracks, and they presumed others provide such information.”
Thus, it may be particularly important for healthcare profes-
sionals working at both referral and treatment centers to de-
velop procedures that routinely verify that patients have re-
ceived adequate teaching with respect to alterations in eating
and nutrition following laryngectomy.
Anyone who has experienced a cold is aware that a dimin-
ished sense of smell affects the taste of food. This is because
much of what is typically defined as taste is, in fact, flavor.
Flavor is the combination of taste and smell, and requires both
senses to be intact (Heald & Schiffman, 1997). In people who
have undergone total laryngectomy, loss of airflow through
nasal passages results in loss of sense of smell (Tatchell, Ler-
man, & Watt, 1985) that should result in decreased sense of
taste. However, 36% of participants who reported a decreased
sense of smell did not report a loss in sense of taste. One pos-
sible explanation for this may be that their perception of how
a food tastes changed over time resulting in taste, though di-
minished, being perceived years later as the same as prelaryn-
gectomy. As one participant noted, “I now enjoy food as
much as I did—either my taste has improved or I got used to
lesser taste.” Alternatively, participants may have learned
techniques that allowed them to smell. Van Dam et al. (1999)
observed the behavior of 63 laryngectomees who were under-
going an odor-detection test. A number of techniques were
identified in the 20 participants who were able to detect odors.
These included (a) moving muscles in the face or neck, (b)
repeatedly moving the floor of the mouth up and down, (c)
taking a bite of air that was pushed into nose by collapsing
cheeks, and (d) moving the stimulus in front of nose. More
than 75% of the people who were able to detect odors were
unaware they used a technique to smell. Participants in the
current study may have adopted similar techniques resulting
in no loss in sense of taste (i.e., flavor). The loss of the sense
of smell also affects other aspects of life (van Dam et al.). The
inability to detect odors such as smoke or natural gas is a
safety issue, while inability to detect body odor can be a hy-
giene issue. Loss of the sense of smell also limits the ability
to enjoy pleasurable odors such as foods, flowers, and fra-
grances.
The sample size of the current study was small and con-
tained a high number of participants with advanced education,
which may not be reflective of the population of people who
have undergone laryngectomies. The sample, however, in-
cluded both those with short- and long-term complications of
laryngectomy. Some reported no difficulties swallowing or
minimal changes in taste after laryngectomy, whereas others
reported chronic alterations in taste, smell, chewing, and swal-
lowing that required major changes in lifestyle and greatly di-
minished enjoyment of eating. Thus, with respect to describ-
ing the range of experiences related to alterations in eating and
nutrition, it appears the sample was representative.
The fact that participants were recruited from an Internet
support group may have resulted in underrepresentation of the
population of individuals with a laryngectomy who have lim-
ited resources. Computer access to an Internet support group
may have biased the sample in the direction of underreporting
of difficulties. This conclusion is supported by van Dam et
al.’s (1999) study in which 14% more of the participants re-
ported inadequate preparation for changes in eating than in the
current study. Because problems with swallowing and taste
improved over time, the low number of people who received
laryngectomies less than two years ago also may have resulted
in underreporting of difficulties related to eating. Thus, the in-
cidence of alterations in eating and nutrition following laryn-
gectomy may be higher and indicate an even greater need for
healthcare professionals to address these issues than is evident
from this study.
Implications for Nursing Practice
The results of this and previous studies have implications
with respect to the development of interventions aimed at
minimizing the distress associated with alterations in eating
and at promoting proper nutritional intake of people with a
total laryngectomy. The most fundamental of these implica-
tions is for clinicians to raise their awareness, as well as that
of their coworkers, regarding the incidence and severity of
eating-related problems faced by people with a total laryngec-
tomy. This increased awareness will lead to greater recogni-
tion of the need for a comprehensive assessment of potential
eating-related problems associated with total laryngecto-
mies.
A comprehensive assessment of potential eating-related
problems is necessary to reveal difficulties not readily appar-
ent from the more routine questions typically asked during
follow-up visits. For example, many participants in this study
reported no difficulty swallowing and no changes in hunger
or appetite following laryngectomy. These same participants,
however, reported changes in smell, taste, enjoyment of eat-
ing, food choice, and nutritional intake following laryngec-
tomy. Identification of these problems will allow healthcare
professionals to assist with the development of effective cop-
ing strategies, and to make appropriate referrals for follow-up
LENNIE – VOL 28, NO 4, 2001
673
such as nutritionists, speech and swallowing specialists, and
laryngectomy support groups.
The results also demonstrate the importance of a compre-
hensive assessment being tied to an institutional protocol that
ensures that all patients receive adequate preoperative and
postoperative teaching. The implementation of this protocol
may be particularly important for major referral centers. Cli-
nicians in referral centers may be more focused on the acute,
rather than long-term, consequences of laryngectomy, assum-
ing that the provider who made the referral will conduct long-
term follow-up. As noted by some the study participants,
however, this is not always the case.
The loss of sense of smell was shown to be a significant
problem for a majority of participants. Thus, instruction on
strategies to increase ability to detect odors could greatly im-
prove the quality of life of a majority of people with a total
laryngectomy. The techniques for smelling that van Dam et al.
(1999) described easily could be added to the treatment plan
for patients undergoing total laryngectomy or any surgical
procedure that results in a permanent tracheostomy. These
techniques may provide an effective means for patients to
overcome problems associated with loss of smell resulting
from tracheostomy. To date, no one has formally tested the ef-
fectiveness of these strategies or determined the best method
of instruction. Further research in this area could have an im-
portant and immediate impact on the care of patients with a to-
tal laryngectomy.
Finally, the results emphasize the importance of clinicians
facilitating patient involvement in laryngectomy support
groups. A portion of the dissatisfaction with preparation by
healthcare providers in the current study was related to partici-
pants feeling unprepared for changes that were not predict-
able. Healthcare providers cannot be expected to prepare pa-
tients for every possible outcome. The following statement by
a participant echoes this conclusion.
Actually, the medical field was helpful, but all adjust-
ments I had to make myself, and each day was a new
challenge I had to overcome. I don’t believe the medical
field can solve all the problems that arise—a laryngecto-
mee must solve them.
The task of solving these problems, however, can be made
easier by consultation with others who have experienced simi-
lar problems. In this respect, the most helpful intervention a
healthcare professional can offer an individual with a laryn-
gectomy may be referral to a support group. Two prominent
support groups for laryngectomees are listed below. Addi-
tional sources of information also are listed at the bottom of
Figure 1.
• International Association of Laryngectomees
7822 Ivymount Terrace
Potomac, MD 20854
Telephone: 301-983-9323
Fax: 301-983-4397
Web site: http://www.laryngectomees.inuk.com/sites.html
• WebWhispers Nu-Voice Club
Web site: http://www.webwhispers.org
Author Contact: lennie.2@osu.edu with copy to editor at rose_
mary@earthlink.net
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For more information . . .
➤ American Academy of Otolaryngology–Head and Neck
Surgery
http://www.entnet.org/
➤ Organization of Women Laryngectomy Survivors
http://www.oowls.org/
➤ Laryngectomy Basics
http://www.larynxlink.com/Library/faqs/FAQ16.htm
These Web sites are provided for information only. The hosts are
responsible for their own content and availability. Links can be
found using ONS Online at www.ons.org.

ONS Online Site Support : ONSOnline@ons.org

SM

Information
www.ons.org
Education ONS Online is an educational online service, spon-
sored by the Oncology Nursing Society (ONS), that
provides a comprehensive range of resources for ONS
Community
members, other healthcare professionals, and patients.

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