Support Care Cancer

DOI 10.1007/s00520-017-3618-7

REVIEW ARTICLE

The life experience of nutrition impact symptoms

during treatment for head and neck cancer
patients: a systematic review and meta-synthesis
Valentina Bressan 1 & Annamaria Bagnasco 1 & Giuseppe Aleo 1 & Gianluca Catania 1 &
Milko P. Zanini 1 & Fiona Timmins 2 & Loredana Sasso 1

Received: 10 October 2016 / Accepted: 6 February 2017

# Springer-Verlag Berlin Heidelberg 2017

Abstract Several electronic databases such as PubMed, CINAHL, Scopus,

Purpose In the literature, there is limited research about the PsycINFO and the Cochrane Library databases were searched.
changed meaning of food, the eating and the eating experience Results A systematic search yielded 121 papers, of which 12
during treatment in patients with head and neck cancer. This met the inclusion criteria. A thematic account of shared nutri-
systematic review includes findings from a qualitative re- tional symptom experiences reported across studies is
search synthesis to gain a deeper understanding of the influ- highlighted and presented. Eight major themes covering three
ence and experiences of dysphagia, dysgeusia, oral mucositis key supportive care domains were identified: impact of symp-
and xerostomia in head and neck cancer patients (HNC) and toms (symptoms during treatment, symptoms working together,
suggests recommendations for care practice. affecting daily living activities and physical changes, symptoms
Method A systematic review and meta-synthesis techniques and food changes), changing social networks and support (so-
were adopted to identify, appraise and synthesize the relevant cial life restrictions, support of peers), nutritional concerns and
literature regarding the experience of nutritional symptoms of strategies (coping strategies, professional support).
HNC patients conducted according to the PRISMA guidelines. Conclusions Dysphagia, dysgeusia, oral mucositis and
xerostomia negatively affected the patients’ quality of life
throughout the period of treatment. The patients’ nutritional
* Valentina Bressan symptom experiences do not occur in isolation. Therefore,
breva05@gmail.com acknowledging the patients’ eating difficulties and challenges
can guarantee appropriate management and support to best
Annamaria Bagnasco manage symptoms in a timely manner.
annamaria.bagnasco@unige.it
Giuseppe Aleo Keywords Systematic review . Qualitative research . Head
giuseppe.aleo@edu.unige.it and neck cancer . Eating experience . Symptom
Gianluca Catania
gianluca.catania@edu.unige.it
Milko P. Zanini Introduction
milko.zanini@edu.unige.it
Fiona Timmins Head and neck cancer (HNC) is quite widespread in several
fiona.timmins@tcd.ie countries around the world [1], and many patients require
Loredana Sasso
aggressive multimodality treatments [2] or are diagnosed
loredana.sasso@unige.it when the disease is already at an advanced stage [3, 4].
HNC has a direct impact on the patients’ ability to eat and
1
Department of Health Sciences, University of Genoa, Via Pastore 1, intensifies the effects of treatments increasing the risk of se-
16132 Genoa, Italy vere malnutrition [5, 6], weight loss, influence and persistence
2
School of Nursing and Midwifery, Trinity College Dublin, 24 of symptoms [7, 8]. HNC therapies and surgical treatments
D’Olier Street, Dublin, Ireland primarily aim at guaranteeing patient survival, local disease

control and quality of life [6, 9]. However, they can cause
serious side effects on the patients’ nutritional status and com-
promise their oral functions and intake [6, 10, 11]. In the
literature, the influence of nutritional impact symptoms
(NIS) is known [9–11], and potentially many of them, together
with the side effects of treatments, could become permanent or
turn out to be late effects of therapies [12, 13]. Mucositis,
swallowing disorders, xerostomia and distortion of taste and
smell are examples of acute NIS associated with oral intake
issues, weight loss and dehydration during and immediately
after chemotherapy and radiotherapy [14, 15]. Late symptoms
are dysphagia, xerostomia, mucosal sensitivity and oral pain,
dysgeusia, trismus, osteoradionecrosis and dental disease
[15–19]. These all influence the patient’s ability to eat and
drink during the treatment period [12], and in some cases, they
induce patients to adopt various nutritional support strategies,
through oral and artificial nutrition [20]. The patients’ enjoy-
ment of food, eating and their social interactions during meals
[12] are dramatically compromised by eating difficulties,
causing significant psychological and physical issues [21].
In the literature, there are examples of HNC studies where
researchers have focused their attention on exploring malnu-
trition assessment [6], evaluation and management of side
effects and toxicities due to treatments [22, 23] or the preva-
lence of NIS [10]. On the other hand, the HNC patients’ lived
experience on NIS is little explored. Among NIS, dysphagia is
one of the most studied and cited in HNC patients [6, 24],
even if dysgeusia, xerostomia and oral mucositis all seem to
impact on the patients’ appetite [25, 26]. Most of the knowl-
edge related to nutritional interventions, quality of life, the
impact of symptoms on oral intake and outcomes in HNC
patients is based on quantitative studies [6, 27]. This consti-
tutes an important gap, because quantitative research cannot
explore in depth how HNC patients live NIS related to both
treatments and progression of the disease [27, 28]. Instead,
through qualitative research, it is possible to explore the pa-
tients’ experiences of health and illness as the individuals
themselves perceive and interpret them [29, 30]. Therefore,
the purpose of this systematic review is to synthesize the
existing qualitative evidence of the influence and experiences
of dysphagia, dysgeusia, oral mucositis and xerostomia in
HNC patients, to gain a deeper understanding of this phenom-
enon and make recommendations for care and clinical
practice.
Methods
Systematic search and screening
The present review was conducted according to the PRISMA
statement [31, 32] and Paterson et al.’s [33] meta-study research
process. Inclusion and exclusion criteria were applied in the
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selection of primary studies (Table 1). PubMed, CINAHL,
Scopus, PsycINFO and the Cochrane Library databases were
searched. To make sure that all relevant literature was included
in the review, no time restriction was applied in relation to the
publication date of the papers. The keywords patient experi-
ence, qualitative research, nutritional symptom(s) and head
and neck cancer were included and combined using Boolean
operators to guarantee all possible combinations.
The MeSH terms were associated with other related words,
modified if possible and necessary, and exploded in databases
[34]. Manual searches, using the reference lists of the selected
studies, were also carried out. To determine the relevance of
all potentially pertinent studies, all titles and abstracts were
scanned using inclusion and exclusion criteria for their content
to determine eligibility before retrieving the full articles.
Critical appraisal of selected studies
The quality of the selected papers was assessed to explore
their possible contribution to the synthesis, to evaluate their
quality and to detect any major gaps in the reporting of the
research [35, 36]. Quality was assessed independently by two
researchers according to the method designed by Dixon-
Woods et al. [37], who identified a set of prompts to facilitate
the assessment of qualitative research, such as asking whether
sampling, data collection and data analyses have been clearly
described; and whether a paper makes a useful contribution
[37]. In addition, the chosen articles were assessed using the
modified version developed by Lundgren et al. [38] of the
Consolidated Criteria for Reporting Qualitative Health
Research (COREQ) [39]. This approach was adopted because
according to some authors [38, 40], the COREQ checklist
does not evaluate some important elements of qualitative re-
search (e.g. ethical issues, quality and audit assessment, rele-
vance and transferability of findings). In agreement with
Walsh and Downe [41], another 13 items were added to the
original tool consisting of 32 items and four items were mod-
ified (Table 2). Therefore, the COREQ modified checklist was
made up of five domains and 45 items (Table 2); to evaluate
the presence or absence of all the quality domains, a score
between 0 and 1 was used. The total maximum score was
45, and the selected articles were appraised using the label
high quality (i.e. positive ratings for 39–45 items), medium
quality (i.e. positive ratings for 31–38 items) and low quality
(i.e. positive ratings for 30 or less items) [38]. The purpose of
this appraisal was not to exclude studies but rather to help the
researchers gain a deeper understanding of each one.
Data extraction and synthesis
Two authors independently read, re-read the date, recording
the details of the selected studies on data extraction forms to
reach an agreement [33, 42]. Moreover, they conducted
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Table 1 Articles’ inclusion and

exclusion criteria Inclusion criteria Exclusion criteria

• Primary research studies that explored perception,
perspective, experience, definition, beliefs and
meaning of nutritional impact symptoms
• Studies published in English and Italian language with
abstracts available
• Articles that dealt primarily with the effect of
xerostomia, swallowing disorders, oral mucositis and
dysgeusia on nutritional status, oral intake and
weight loss in HNC
• Studies that used qualitative methodology
• Studies that included adult patients with HNC
• Studies focused on the quality of life of HNC
patients only
• Mixed methods studies in which qualitative
findings cannot be separated from quantitative
findings
• Mixed sample qualitative studies in which findings
about the target population cannot be separated
from findings about other populations
• Alternative-style qualitative research presentations
containing no extractable findings (e.g. poems,
plays, auto-ethnographies)
• Grey literature, not primary research or quantitative
studies
• Studies that did not provide sufficient data
regarding participants, methods or results

inductive coding for meanings and content and then created a dysgeusia in seven studies [16, 21, 28, 45–47, 50]. No study
database of the potential descriptive themes [36]. Each select- described the experience of mucositis, although two studies
ed paper was analysed to recognize key findings and potential mentioned about ‘sensitive mouth’ or ‘oral sensory discom-
themes [42]. Common themes were identified from the list of fort’ [46, 50].
major findings, while the key findings of the selected studies
were grouped and categorized into areas of similarity.
Quality criteria
Subthemes were identified from the collated themes and then
examined several times to interpret the content of each theme
In the selected studies, the researchers used appropriate
and detect any consistencies and incongruities. Eventually,
methods for assessing and analysing the data. Information
through the description of all the themes and subthemes and
regarding the methodology used to analyse collected data
their exemplars from original studies, the findings were syn-
were adequately described. The majority of the studies obtain-
thesized in a report [42].
ed a quality score between 20 and 36. Of these, only two
scored higher than 30 (Table 3) indicating that the quality of
the selected studies ranged from low to medium. In fact, many
Results
lacked of detail regarding analytical approach and ethical in-
formation but were selected because they rated highly for their
Database searches yielded 121 studies, with three additional
conceptual richness. All of the 12 analysed studies reported
records from citation searches. Following the removal of du-
the aim of the research and the study design, except one [46].
plicates and title and abstract screening, 17 full text articles
Three studies recruited participants using purposive sampling
were assessed and 12 studies met the selection criteria. In the
[16, 21, 49], while in the other studies, patients were recruited
PRISMA flowchart [31, 32] (Fig. 1), the stages of the review
through convenience sampling, and the authors reported how
process, including study identification, inclusion and exclu-
the sample sizes were defined. The total sample of the studies
sion, are shown. The selected studies were published between
included 207 HNC patients, with a minimum of 6 to a maxi-
1991 and 2015, and their characteristics are presented in
mum of 88 participants per study. The findings of all the
Table 3 , while the features of the population included in the
selected studies provided new insight and a deeper under-
studies are summarized in Table 4. We found that two papers
standing of how patients experienced the four nutritional im-
were related to the same study; therefore, they were consid-
pact symptoms (NIS) explored. Six of the selected papers
ered and analysed as one [43, 44].
reported and took into account the study’s limitations and
Two studies were conducted in Sweden [16, 45], one in
weaknesses [16, 28, 43, 48–50].
Canada [21], two in the USA [46, 47], one in China [48],
two in the UK [28, 49] and four in Australia [43, 44, 50,
51]. With regard to the methodology of the studies, 11 used
a qualitative design and one used a mixed method design [51]. Synthesis of the findings
Dysphagia or swallowing disease was reported in nine
studies [21, 28, 43–45, 47–51], xerostomia and dry mouth in Three major themes emerged from selected qualitative stud-
six studies [21, 28, 45, 46, 50, 51] and taste distortion and ies: (1) ‘impact of the symptoms’, (2) ‘changing social

Table 2 Quality assessment checklist
Domain 1: research team and reflexivity
a findingsa
1. Statement of which author/s conducted the interview or focus group
2. List of the researchers’ credentials, e.g. PhD, MDa
3. Statement of their occupation at the time of the studya
4. Indication of the gender of the researcher(s)a
5. Statement of relevant experience or training that researcher(s) hada
6. Statement of any relationship established between participants and
researchers prior to study starta
7. Statement of participant knowledge of the interviewer*
8. Evidence of self-awareness/insight in the characteristics reported
about the interviewer/facilitator: e.g. assumptions, bias, reasons for or
interest in the research topica
Domain 2: scope and purpose
9. Link between research and existing knowledge demonstrateda
10. A clear aim for the study was stateda
Domain 3: study design
11. A clear methodological orientation was stated to underpin the
study, e.g. grounded theory, discourse analysis, ethnography,
phenomenology, content analysisa
12. Ethical committee approval granteda
13. Documentation of how autonomy, consent, confidentiality, etc.
were managea
14. Description of how participants were selected: e.g. purposive,
convenience, consecutive, snowballa
15. Description of method of approach e.g. face-to-face, telephone,
mail/emaila
16. Sample size: number of participants in the study declareda
17. Number of people who refused to participate or dropped out given,
with reasonsa
18. Description of setting of data collection e.g. home, clinic,
workplacea
19. Declaration of presence of non-participants, if applicablea
20. Description of important characteristics of the sample, e.g.
demographic data, date data collecteda
21. Description of interview guide given, e.g. questions, prompts,
guides and any pilot testinga
22. Number of repeat interviews given, if applicablea
23. Statement of audio/visual recording or nota
24. Statement of whether or not field notes were useda
25. Duration of the interviews or focus group givena
26. Evidence provided that data reached saturation or
discussion/rationale if they did nota
27. Statement of whether or not transcripts were returned to participants
for comment and/or correctiona
Domain 4: analysis and findings
28. Number of data coders given/evidence of more than one researcher
involveda
29. Description provided of the coding tree/discussion of how coding
systems evolveda
30. Statement of whether themes were identified in advance or derived
from the dataa
31. Statement of manual analysis, or the software that was used to
manage the data*
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Table 2 (continued)
32. Statement of whether or not participants provided feedback on the
33. Statement of whether or not deviant data were sought, if applicablea
34. Statement of whether or not researchers ‘dwelt with the data’,
interrogating it for alternative explanations of phenomenaa
35. Sufficient discussion of research processes such that others can
follow ‘decision trail’a
36. Identified participant quotations (e.g. by participant number)
presented to illustrate the themes/findingsa
37. Consistency seen between the data presented and the findingsa
38. Major themes clearly presented in the findingsa
39. Description given of diverse cases or minor themesa
40. The results are presented with an essence (phenomenology), main
interpretation (hermeneutics), theory/main concepts (grounded theory),
main theme (content analysis)a
41. Evidence of systematic location and inclusion of literature and
theory to contextualize findingsa
Domain 5: relevance and transferability
42. Clearly resonates with other knowledge and experiencea
43. Provides new insights and increases understanding*
44. Limitations/weaknesses clearly outlineda
45. Further directions for investigation outlineda
New incorporated items: 9, 10, 12, 13, 33–35, 40–45; adapted items: 8,
26, 28, 29
a
Yes, no or not applicable
networks and support’ and (3) ‘nutritional concerns and strat-
egies’. These themes were divided into several subthemes of
meaningful units (Table 5).
Theme 1: impact of the symptoms
Subtheme 1.1: symptoms during treatment
Many patients lived similar experiences, connected with treat-
ment, and reported high levels of deterioration in their ability
to eat and drink [16, 49]. Molassiotis and Rogers [28] reported
that at the beginning of the treatment, symptoms affected nu-
tritional intake and impacted on everyday life in all the pa-
tients they interviewed. Most of the patients reported that they
struggled with appetite and weight loss, swallowing disease,
sore throat, taste changes and xerostomia. Dry mouth was
experienced at an early stage, and patients described it as an
unfamiliar and unpleasant sensation; they felt in fact as if they
had cotton inside their mouth and their tongue stuck to the
palate [45]. Other eating problems linked to dry mouth were a
high sensitivity to spicy food, temperature and texture; eating
was painful and difficult; alcohol burned; and food became a
thick ball or tended to get stuck between their teeth [46]. After
the first few weeks of treatment, swallowing became very
painful and patients described their experiences using words
such as ‘excruciating’ and ‘pure hell’ [49]. In this period,
nutritional symptoms like dysphagia, thick saliva and other
NIS became common [28] and their effects increasingly re-
duced the patients’ ability to eat [49, 50]. Larsson et al. [45]
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Fig. 1 The systematic review

Records idenfied through
flow diagram database searching Addional records idenfied
PUBMED (n=54) SCOPUS (n=8) through other sources
CINAHL (n=53) Cochrane (n=0) (n=3)
PsycINFO (n=6)Total =121

Records aer duplicates removed

(n =94)

Records screened Records excluded

(n=94) (n=77)

Full-text arcles assessed Full-text arcles excluded,

for eligibility (n=17) with reasons 2 full texts
irrelevant to the study.
2 were not qualitave
studies
1 was not a study
Studies included in
qualitave and
quantave synthesis
(n =12)

noticed that in some respondents, the quantity of saliva was
higher than before, but it was more viscous and needed to be
swallowed actively. These changes in saliva characteristics
caused difficulties in chewing and swallowing food and in-
creased the sense of nausea [45].
During treatment, patients reported an exacerbation of all
the NIS as well as a constant weight loss. Xerostomia was
severe enough to cause eating or drinking problems, and pa-
tients completely lost the sense of enjoying food [28]. The
same problems were reported by Larsson et al. [45], who
reported that the patients’ physical ability to chew and to
swallow decreased after 2–3 weeks of radiotherapy and be-
came worse as treatment proceeded. Moreover, for some pa-
tients, the problems were so severe that it was impossible to
eat and even difficult to drink because of dryness, swelling,
narrowness and pain in their mouth and throat [45].
After the end of the treatment, patients reported similar but
less severe symptoms. Most of the patients declared that
swallowing itself was highly unpredictable and more severely
affected than they imagined, while some still suffered from
nausea and loss of appetite [49]. Even upon the 9-month fol-
low-up, many physical problems persisted [49]: mouth dry-
ness, dysphagia, pain and taste loss or alteration continued to
be the most frequently described symptoms [16, 28]. Many
patients reported that the inability to get rid of the symptoms,
raised concern that these could become ‘permanent symp-
toms’ [16, 28, 49].
Subtheme 1.2: symptoms working together, affecting daily
living activities and physical changes
Patients experienced a wide range of physical changes and
emotions connected to NIS [43]. Body function alterations
due to disease and treatment impacted on the patients’ ability
to be active [51]. Symptoms associated with restricted activity
also had a rebounding and synergistic effect on their already-
compromised eating habits [51]. This situation reduced the
desire to eat and made it harder for patients to overcome the
physical difficulties of chewing and swallowing [16]. They
expressed emotions like frustration, anger and anxiety and
depression for the condition and body changes, as well as
embarrassment, disappointment and a sort of shock [43, 45,
48], because they realized they were no longer able to eat [21].
Many patients experienced tiredness and fatigue and reported
this experience in different ways, but they all described this
situation with words like being ‘lethargic’ or having ‘weak
muscles’ [28]. Some patients, even 2 years after treatment,
continued to require dietary restrictions and experience nega-
tive impacts on the physical aspects of swallowing, activity
limitation and eating restrictions [51].
Tong et al. [48] reported that dry oral cavity was the main
issue connected to the various swallowing difficulties, al-
though patients tended not to admit having swallowing prob-
lems that affect their quality of life. Many patients do not
consider mild or intermittent symptoms of dysphagia,
Table 3 Characteristics of included studies
Study Research question/aim
Cartmill et al. 2012 (1) To examine the functional
swallowing, nutritional status and
general
and swallowing-related patient-rated
function at 2 years post-treatment with
AFRT-CB for locally advanced
oropharyngeal cancer (2) to explore the
patient’s perspective of his/her ongoing
side effects and barriers to oral intake
at 2 years post-AFRT
Larsson et al. 2003 To acquire a deeper understanding of the
HNC patients’ lived experiences of
eating problems, the consequences of
them in daily life and the strategies for
coping related to these problems
during RDT
McLaughlin and To begin to fill this knowledge gap by
Mahon 2014 describing the strategies disease
survivors employ to cope with
eating and taste impairments
McQuestion et al. To present findings of a more in-
2011 depth analysis of the subtheme
of the changed meaning of food
that emerged in a larger
qualitative descriptive study
that explored the HNC patients’
experiences of receiving primary
RDT and the disruptions caused
by treatment
Study design
Mixed methodology
(questionnaire
and semi-structured
interviews by phone)
Phenomenological
approach
ND
Qualitative research design
based on the methodological
work of Thorne (1997)
Methodology used for
collecting data
Interviews were
conducted by phone
Interviews were tape
recorded and transcribed
verbatim
Interviews were tape recorded
and transcribed verbatim
Interviews were transcribed
verbatim in preparation for
data analysis
Methodology used Main results/findings/themes Quality
for data analysis and subthemes score
Framework derived Fifteen barriers to oral intake with 25
by ICF core set varying rates of frequency that
for HNC impact on the activity limitation
and patients restrictions
Colaizzi’s method Eating problems experienced 27
(1978) (ability to chew and swallow,
will and desire to eat, experiences
of change in saliva quality and
consistency, experiences of narrowness
and pain, experiences of taste changes
and nausea), consequences in daily life
(the way of life is disturbed, loss of
the meal loss of togetherness,
paralysing tiredness, life itself is
threatened, the image of self is
changed—shame waits round the
corner), ways to cope with the
situation (trying to see the end, to
survive, moving between hope and
despair, to endure the situation,
strength comes from inside,
strength comes from outside)
Content analysis Food preference and aversion (smooth 21
and descriptive or blended, nutritional supplements,
statistics more pepper or hot sauce, more
gravy or condiments, ground meats),
taste-related food changes (sweet, salty,
sour or bitter food), social isolation,
eating and dry mouth, oral sensory
complaints (dry mouth, sensitivity
to spicy food, sensitivity to texture,
eating is painful, eating is work,
alcohol burns, sensitivity to
temperature), weight loss benefits
Giorgi’s (1985) Difficulties during treatment and the 20
analytical recovery period were described
technique and food and eating were linked
with distress associated with unmet
expectations that side effects from
treatment. Food preparation, taste
modifications and enjoy food
required creative improvisation,
new meanings
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Table 3 (continued)
Study Research question/aim
Molassiotis and To explore experiences, over a
Rogers 2012 1-year period, to enhance our
understanding of issues and
concerns described by patients
with HNC
Nund et al. 2014 To explore how dysphagia
impacts on the everyday lives
of people treated non-surgically
for primary HNC in the months
and years following treatment
Nund et al. 2014 (A) To explore the lived experience
of people with dysphagia
following non-surgical treatment
for HNC and examine their
perceptions of service needs
Ottoson et al. 2013 To describe the experience of
food, eating and meals following
radiotherapy in patients with HNC
Pateman et al. 2015 To describe how people who have
been treated for HNC cope with
altered oral health and function
and to identify their supportive
care needs
Patterson et al. 2015 To describe the patients’
experiences of swallowing
difficulties following (chemo)
RDT for HNC and to explore
any changes over time
Study design
Qualitative longitudinal study
Qualitative descriptive study
using a phenomenological
approach
Qualitative descriptive study
using a phenomenological
approach
Qualitative study design
using in-depth semi-structured
interviews
Qualitative descriptive
approach
Ethnographic observation
(exploratory study) and
interviews
Methodology used for
collecting data
Interviews were tape recorded
and transcribed verbatim
with verification from the
researchers and fields note
Individual face-to-face, in-depth,
semi-structured interviews
were
tape recorded and transcribed
verbatim
Individual face-to-face, in-depth,
semi-structured interviews
were tape recorded and
transcribed verbatim
In-depth, semi-structured
interviews were tape
recorded and transcribed
verbatim
In-depth, semi-structured
interviews guided by a
semi-structured instrument
were tape recorded and
transcribed verbatim
Observation was recorded
using brief notes.
Semi-structured interviews
were audio recorded and
transcribed
Methodology used Main results/findings/themes Quality
for data analysis and subthemes score
and changes life routines. The changed
meanings of food were evident in three
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parts of the patients’ lives: (1)
physical, (2) emotional and (3)
social losses
Content analysis Nutritional concern, tiredness, 36
radiotherapy mask and maintaining
normality
Thematic analysis Physical changes related to swallowing; 27
emotion evoked by living with
dysphagia; altered perceptions and
changes in appreciation of food;
personal and lifestyle impacts
Thematic analysis Entering the unknown: life after 28
treatment for HNC; making practical
adjustments to live with dysphagia;
making emotional adjustments to live
with dysphagia; accessing support
outside the hospital services;
perceptions of dysphagia related
services
Content analysis A long journey—taking small steps 32
to an uncertain future; a new way
of eating; eating without satisfaction;
challenging meals outside the family;
support and information—the key to a
successful journey; The creation and
acceptance of a new normal.
Inductive content Dimensions of eating: maintaining oral 29
analysis health after treatment; adapting to
applying key concepts the chronic side effects of treatment
of the stress, appraisal Recurrent use of problem-focused
and coping model coping; the role of peer support and
psychosocial treatment outcomes;
increased necessity of post treatment
specialist dental oncology services;
information and psychological
support needs
Thematic analysis The patients’ reports of swallowing 29
function were divided into four time
frames: pre-treatment, during radiotherapy,
early (0–3 months) and late
(6–18 months)
post-treatment. The majority reported
minimal problems at diagnosis, but marked
impairment during and after RDT, without
a return to pre-treatment functioning.
Table 3 (continued)
Study Research question/aim
Tong et al. 2011 To explore the perceptions
and experiences of
swallowing difficulties
in irradiated survivors
of NPC
Wilson et al. 1991 (1) To describe the patient’s
perspective on eating
problems during and after
radiotherapy for HNC (2)
to identify strategies used
by patients to improve food
intake during treatment
AFRT altered fractionation radiotherapy, AFRT-CB altered fractionation RDT with a concomitant boost, HNC head and neck cancer, ICF World Health Organization International Classification of
Functioning, Disability and Health, ND not declared, RDT radiotherapy, EDT eating during/after treatment, NPC nasopharyngeal carcinoma
Study design Methodology used for
collecting data
Qualitative in depth Interviews were audio
interview recorded and transcribed
Descriptive study included Semi-structured interviews,
semi-structured using EDT interview
interviews and review instrument, and review
of medical records of medical records.
Interviews were tape
recorded and transcribed
verbatim
Methodology used Main results/findings/themes Quality
for data analysis and subthemes score
During RDT and in the early period of
recovery many patients focused on
physical side effects and eating
behaviours changes. After 6 months,
side effects decreased, while the
action of swallowing remained difficult,
leading to changes in lifestyle, social and
family relationships
Colaizzi’s method (1978) Patient judgement of swallowing 26
difficulties, the patients’ definition
of normal diet, the perceptions of ‘
no difficulties’ in swallowing, little
attention paid to dysphagia symptoms
Content analysis All subjects readily described specific 27
activities that helped them eat during
and after RDT, described eating
problems during and after
treatment and, for these reasons,
they adopted specific eating strategies
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Table 4 Characteristics of studied population

Author, year, country Study population Drop out/loss Tumour location Symptoms Treatments
data
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Cartmill et al. 2012. Australia 12 participants (F = 2, M = 10), 3 patients Tonsil, pharyngeal Dysphagia and xerostomia RDT
mean age = 66 years, wall, supraglottic
ranged age= 53–82, SD 20.3
Larsson et al. 2003. Sweden 8 participants (6 interviewed twice ND ND Swallowing, xerostomia RDT
and 2 once) (F = 2, M = 6) and dysgeusia
men’s ranged age
43–72; female ranged age 52–66
McLaughlin and Mahon 2014. USA 88 participants (F = 26, M = 62) 5 subjects Paranasal, pharynx, Xerostomia and taste change RDT; surgery; surgery + RDT;
oral cavity, larynx RDT + CT;
surgery + RDT + CT
McQuestion et al. 2011. Canada 17 participants (F = 2, M = 15), ND ND Swallowing, mouth sores, RDT
ranged age 30–70 taste change, oral dryness
and lost of appetite
Molassiotis and Rogers 2012 UK 16 participants (F = 2, M = 14), 1 T1; 3 T2, Oral, oropharyngeal Dysphagia, xerostomia, RDT, CT + RDT, surgery
mean age 61 years, range age = 1 T3, 2 T4 cancer, laryngeal cancer, taste change
34–80, SD 13.7 squamous cell cancer
in the vocal cords
Nund et al. 2014. Australia 24 participants (F = 4, M = 20), ND Tonsil, base of tongue, Dysphagia RDT, RDT and systemic
ranged age 43–71, mean 57.4 hypopharynx, nasopharynx therapy
years, SD 8
Nund et al. 2014 (A). Australia 24 participants (female = 4, male = ND Tonsil, base of tongue, Dysphagia RDT, RDT and systemic
20), ranged age 43–71, mean hypopharynx, nasopharynx therapy
57.4 years, SD 8
Ottoson et al. 2013. Sweden 13 participants (F = 2, M = 11), ND Oral cavity, pharynx, larynx Taste alterations RDT, RDT + surgery
mean age 60 ranged age 47–70
Pateman et al. 2015. Australia 6 participants (F = 2, M = 4), ND Oropharynx, tonsil, Dysphagia, dysgeusia, RDT + CT, surgery,
mean age 61.3, ranged age 50–72 nasopharynx, mandible, sensitive mouth, surgery + RDT
parotid gland, tongue xerostomia
Patterson et al. 2015. UK 12 participants (ethnographics ND ND Swallowing disease RDT + CT, RDT
observations): (F = 2, M = 10)
mean age 62.1 ranged age 45–77;
9 participants (interviews) (F = 1,
M = 8) mean age 63.1, ranged age 50–72
Tong et al. 2011. China 60 participants (F = 18, M = 42) ND ND Swallowing disease, RDT
ranged age 34–71 Xerostomia
Wilson et al. 1991. USA 11 participants (F = 1, M = 10), ND Oral cavity, sinus, larynx Taste change, Surgery+,RDT, CT + RDT
ranged age 49–73, mean age 59 swallowing difficulties

CT chemotherapy, SD standard deviation, F female, M male, ND not declared, RDT radiotherapy, T time, UK United Kingdom, USA United States of America
 Support Care Cancer

Table 5 Themes and subthemes developed in the process of meta-synthesis to integrate the findings

Themes Subthemes Key aspects Studies

Impact of symptoms Symptoms during treatment
Symptoms working together
and affecting physical changes
Symptoms and food changes
Changing social Social life restrictions
networks and support The supports of peers
Nutritional concerns Coping strategies
and strategies Professional support
Similar experiences; the worse of all
nutritional symptoms and weight loss;
nutritional impact symptoms and
tiredness continued to be the most
frequently; circular and mutual
relationship between physical
problems and eating issues;
adjustments with food selection;
dietary restriction
Change of quality relationship; social
life is modified; not enjoy the
experience of dining out and
with other people; embarrassment
and frustration; the importance of
assistance from family and friends;
the importance to talk and share
common situations
Selected food on trial and error
problem-solving approach; learn
what eat or not; select food that
patients previously disliked;
symptoms were self-managed;
typology and texture of the food
change; personalized follow-up;
information; nutritional counselling;
education and professional supports
Larsson et al. 2003; McQuestion
et al. 2011; Tong et al. 2011;
Cartmill et al. 2012; Molassiotis
and Rogers 2012; Ottoson et al.
2013; McLaughlin and Mahon
2014; Nund et al. 2014; Nund et
al. 2014a; Patterson et al. 2015;
Pateman et al. 2015
Wilson et al. 1991; Larsson et al.
2003; Tong et al. 2011;
McQuestion et al. 2011;
Cartmill et al. 2012; Ottoson
et al. 2013; McLaughlin and
Mahon 2014; Nund et al. 2014;
Nund et al. 2014a; Patterson
et al. 2015; Pateman et al. 2015
Wilson et al. 1991; Larsson et al.
2003; McQuestion et al. 2011;
Cartmill et al. 2012; Molassiotis
and Rogers 2012; Ottoson et al.
2013; McLaughlin and Mahon
2014; Nund et al. 2014; Nund
et al. 2014a; Pateman et al.
2015; Patterson et al. 2015

especially if they can manage by themselves [48]. Patients did
not seem to be aware of their condition of gradual deteriora-
tion, because their perception was that the symptoms appeared
all of a sudden [48]. In Nund et al.’s [44] study, instead, pa-
tients reported the acceptance of their difficulties, underlining
the importance of insisting, adapting, making adjustments and
continuing to eat despite the problems. For some of the
interviewed patients, dealing with this whole situation meant
facing moments of hope and moments of despair [45],
while—on the other hand—some patients still hoped to re-
sume their normal eating abilities. Mouth dryness, loss of
teeth, changed masticatory function, swelling and pain also
caused talking difficulties, embarrassment and forced patients
to adapt to new ways of eating [45, 50], and meal times be-
came more stressful [16]. Bad taste, mouth and throat ulcera-
tion connected to treatments and a high sensitivity of oral
mucosa and dysphagia contributed to social isolation and re-
duced quality of life [45, 50].
Subtheme 1.3: symptoms and food changes
In many studies, patients described a disruption of their sense
of taste and how NIS reduced appetite and added other eating
limitations [28, 45, 46, 50]. Continued dysgeusia and
xerostomia increased food selection and greatly limited oral
intake [46, 50]. Due to taste changes, even adding more
flavour to their food (i.e. sugar) could give rise to difficult
eating situations, because the additional flavour faded after
their first few bites, stimulating cough and/or burning sensa-
tions [46]. Many patients reported changes in their consump-
tion of salt and a reduced or a totally gave up drinking coffee
and tea, bitter beverages and eating foods such as some kinds
of vegetables and spicy, salty or crunchy food [46, 50].
Adjusting to selected types of food with as specific texture
and consistency was needed to make food palatable [21],
and for some patients, avoidance was necessary [28].
Theme 2: changing social networks and support
Subtheme 2.1: social life restrictions
One of the consequences of NIS reported by HNC patients
was the change in the quality of their relationships with rela-
tives and friends [48]. During treatment, the patients’ social
life was modified and restricted to hospital and home, causing
a general loss of interest in social activities because they
‘couldn’t be bothered’ with eating and drinking [49]. People
described changes in their eating environment and no longer
enjoyed dining out [21, 46] with other people [16].
Embarrassment and frustration were common experiences,
because the consistency and types of food were modified,
and patients often started coughing while eating, made noises
Support Care Cancer
or took much longer to finish their meal [16, 21, 43, 46, 49].
Respondents lost their ability to eat and interest in food and
cooking [45, 50]. For many patients, assistance provided by
family and friends in the preparation of their food was impor-
tant, who were often involved in aspects like food selection,
cooking and providing encouragement to keep on eating [16,
44, 45, 47, 51]. They also motivated informants to eat in spite
of their difficulties [45] especially when patients presented
dysphagia [44]. However, family members did not always
understand the eating difficulties and struggles of HNC pa-
tients during meal times [43, 44]; therefore, some preferred to
eat alone [46].
Subtheme 2.2: peer support
Two studies reported the importance for patients to talk and
share common situations with other people with a similar
experience of treatment and symptoms [44, 50] highlighting
the value of talking to peers in the hospital waiting room [44].
By doing this, they experience a sense of camaraderie and feel
better understood, share thoughts, feelings and emotions that
are common to all patients with the same pathology and treat-
ment [50].
Theme 3: nutritional concerns and strategies
Subtheme 3.1: coping strategies
An important dimension of NIS and the HNC patients’ eating
problems included the strategies adopted to facilitate their
swallowing functions and their eating and drinking experience
[51]. Many informants selected foods adopting a problem-
solving approach. For example, in case of eating problems
with a specific type of food, they would adjust their choice if
this resolved their problem [21, 44, 45, 47]. Most of the pa-
tients reported the importance of learning the difference be-
tween what they could and what they could not eat [44] and
what they could swallow [49]. With regard to their problems
of dysphagia, patients learned to keep correct posture of their
head while eating, and they also understood that they had to
choose soft textures and food easy to chew or that they should
use a blender [47, 50]. Moreover, many patients had to accept
food that they previously disliked or did not eat [47]. They
often had to add liquids, sauces or gravies to help the food pass
through their throat and extra seasoning to improve the flavour
[44, 50, 51].
To reduce the problem of having a dry mouth, patients
drank water or liquids like milk, using oil to lubricate their
mouth and chewing gum to stimulate saliva production or
using gargled and artificial saliva [16, 28, 51]. Another issue
reported by patients was the great amount of time they re-
quired to finish their meals [21, 49]. Patients were forced to
reduce their food into small pieces, eat child-sized portions
and have meals more frequently [44, 47]. Supplementary food
supports [16, 44, 45, 49, 51] and pharmacological interven-
tions were suggested for some symptoms (i.e. taking medica-
tion for sore throat before meals) [28, 44, 47]. However, most
of the symptoms were self-managed by patients because some
drugs produced side effects and, however, did not provide
long-lasting relief [28].
Subtheme 3.2: professional support
Patients underlined the importance of an ongoing health pro-
fessionals’ practical and personalized follow-up throughout
the various phases of treatment [16, 43, 44, 50]. To feel safe
and secure, patients require accurate and sufficient informa-
tion and counselling [45]. The need for information mostly
involved oral health care, side effects of treatment and its
impact on food intake, eating and daily life, strategies to relief
symptoms and time needed to return to normal eating and
lifestyle [16, 45, 50]. In addition, it was important for patients
to build a good relationship with their health professionals
[45]. Furthermore, in the study of Pateman et al. [50], few
patients needed additional psychosocial support during treat-
ment to cope with the psychological consequences of cancer.
The lack of nutritional counselling, education and professional
support has also been underlined in two studies [43, 47].
Discussion
Eating and food have an important biological and social func-
tion in people’s lives, assuming a symbolic meaning in terms
of celebration and enactment of life roles. These important
features are impaired in many HNC patients, who consequent-
ly live with several eating problems that modify their quality
of life [21]. Moreover, although patients eventually accept
factors such as changes in their body image, the negative
feelings and consequences of their illness and treatments often
remain [52]. Starting from these assumptions, the present
meta-synthesis provides a theoretical approximation to what
it means for HNC patients to live with four of the most report-
ed NIS. Our results, besides to those obtained by previous
literature reviews [6, 24, 27, 53, 54], show that the issues
related to symptom and treatment side effects in this popula-
tion have been extensively described [55]. However, the phys-
ical, psychological and social impacts of the four analysed
NIS on the patients’ adaptation and strategies to cope with
eating problems are still partially unexplored. In accordance
with the findings of Lang et al.’s [54] review, our findings
confirm that HNC patients experience difficulties and struggle
with eating, generating feelings of anxiety, embarrassment
and distress, caused also by NIS throughout the period of
treatment.

In our view, this meaning linked to the analysis of NIS
constitutes a multidimensional experience for patients, where
the physical effects of treatment and disease are strictly con-
nected with their psychological, social and emotional dimen-
sions. Although selected studies mostly focus on dysphagia,
our review revealed that also the combined effect of
xerostomia and dysgeusia heavily affects the patients’ eating
abilities and habits. Therefore, when NIS continue also after
the end of treatment, the same problems and difficulties persist
[56], raising in patients concerns related to the permanent
inability to eat and enjoy food again. These findings are in
line with those of previous studies [25, 26] and suggest that
HNC patients usually experience various NIS at the same
time, which overall impact in a circular and reciprocal manner
with physical changes, eating problems and the patient’s role
change within their family and the society, leading to distress
[54, 55]. Hence, further research on the patients’ experience of
symptoms at the same time during treatment is recommended.
We also found that for patients, the support of their family
was very important to help them cope with eating problems. In
particular, the role of the family was important to monitor
weight loss and food intake; to prepare, select food and cook
meals and to provide support when patients used a problem-
solving approach to face their eating problems [21, 44, 45,
47]. These findings do not seem to be entirely in line with
the results of other studies, where for many patients, the rela-
tionships with family, friends and social life are affected and
damaged by the cancer journey [57], due to the side effects of
the treatments and the symptoms [58].
Moreover, if at first family support could be considered a
good way to react both against the cancer and the side effects
of treatments, however, patients and their caregivers do not
always autonomously recognize the signs of malnutrition or
the seriousness of some symptoms, such as dysphagia [48].
This suggests the importance of building a strong partnership
between patients, their families and health professionals,
where support is provided through a structured approach
[59]. However, in our review, only few studies [16, 43, 44,
50] underlined the importance of the health professionals’ role
in helping patients with their eating problems and the patients’
need to be supported by their peers emerged only from two
studies [44, 50]. This aspect also highlights the need to rapidly
find a system to bridge the gap between the primary care of the
cancer disease and the general health status and quality of life
of patients and their families.
Finally, the present meta-synthesis showed that the HNC
patients’ experiences of NIS have been mainly studied in
British or American contexts. In fact, no similar studies have
been conducted in Italy or in other high-income countries,
where the incidence rates of HNC are high [1]. This is an
interesting finding because HNC is a common disease in sev-
eral countries around the world [1], symptoms are a cultural
construction [60, 61] and their experience is socially
Support Care Cancer
influenced [62]. Therefore, NIS experience in various cultural
and social settings would be interesting to explore, even in
contexts where ad hoc resources are available for this type
of patient. In this way, heath professionals could compare their
own practice, develop new competencies and understand the
importance of continued monitoring of patients and NIS over
time by using validated and sensitive instruments, and of
which information to give to patients, and how and when this
should be done [16, 63, 64]. Additional research is required to
gain a deeper understanding of the complexity of the impact
and effects of NIS on HNC patients across various types of
treatments and identify the best coping strategies. New stud-
ies, with a higher methodological quality, would enable to
gain a better understanding of the patients’ eating problems
and NIS management in relation to healthcare systems, differ-
ent cultural settings, professional support, social and physical
environments and individual self-management. More inter-
vention and longitudinal studies, such as those by
Molassiotis and Rogers [28] and Patterson et al. [49] would
increase our understanding of this multifaceted phenomenon
in relation to any possible pertinent aspects and over time.
Limitations
Since only primary published studies written in English and
Italian were selected and the majority of these was conducted
in British or American settings, this could be a limit for the
generalizability of the results to countries with different cul-
tures and eating habits.
Compliance with ethical standards
Funding source This research did not receive any specific grant from
funding agencies in the public, commercial or not-for-profit sectors.
Conflict of interest The authors declare that they have no conflict of
interest.
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