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Disability and Rehabilitation
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
Third-party disability in carers of people with
dysphagia following non-surgical management for
head and neck cancer
Rebecca L. Nund, Nerina A. Scarinci, Bena Cartmill, Elizabeth C. Ward, Pim
Kuipers & Sandro V. Porceddu
To cite this article: Rebecca L. Nund, Nerina A. Scarinci, Bena Cartmill, Elizabeth C. Ward, Pim
Kuipers & Sandro V. Porceddu (2015): Third-party disability in carers of people with dysphagia
following non-surgical management for head and neck cancer, Disability and Rehabilitation
To link to this article: http://dx.doi.org/10.3109/09638288.2015.1046563
Published online: 18 May 2015.
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ISSN 0963-8288 print/ISSN 1464-5165 online
Disabil Rehabil, Early Online: 1–10
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2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1046563
RESEARCH PAPER
Third-party disability in carers of people with dysphagia following
non-surgical management for head and neck cancer
Rebecca L. Nund
1
, Nerina A. Scarinci
1
, Bena Cartmill
2,3
, Elizabeth C. Ward
1,2
, Pim Kuipers
2,4
, and
Sandro V. Porceddu
5,6
1
School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, QLD, Australia,
2
Centre for Functioning and Health Research,
Metro South Hospital and Health Services District, Queensland Health, Buranda, QLD, Australia,
3
Speech Pathology Department, Princess Alexandra
Hospital, Woolloongabba, QLD, Australia,
4
Population and Social Health Research Program, Griffith Health Institute, Griffith University, Logan, QLD,
Australia,
5
School of Medicine, The University of Queensland, Herston, QLD, Australia, and
6
Radiation Oncology Department, Princess Alexandra
Hospital, Woolloongabba QLD, Australia
Abstract
Purpose: Third-party disability pertains to the consequences of a person’s impairment which
impacts on the functioning and ability of their family members or significant others. With the
emergence of research demonstrating the pervasive effects of dysphagia following head and
neck cancer (HNC) on the carer, the aim of this study was to identify the International
Classification of Functioning, Disability and Health (ICF) domains and categories that describe
the third-party disability of carers of people with dysphagia following HNC. Method: Twelve
carers of people with dysphagia following HNC participated in individual semi-structured, in-
depth interviews. Categories and sub-categories identified from the qualitative analysis were
mapped to the ICF using the established linking rules. Results: The majority of the categories
and sub-categories from the qualitative analysis were successfully linked to the ICF with most
linking to the Activities and Participation component. A number of contextual factors were also
identified as impacting on the functioning of carers. Conclusions: The ICF can be successfully
used to describe the third-party disability in carers of people with dysphagia following HNC
management. This information could be used by clinicians, researchers and policy makers to
help establish evidence-based guidelines that include carers in the assessment and manage-
ment of dysphagia associated with HNC.
! Implications for Rehabilitation
!
Clinical levels of distress and reduced quality of life have been associated with caring for a
person with dysphagia following head and neck cancer.
!
The flow-on effects of dysphagia experienced by a carer or close family member can be
understood as a third-party disability, which impacts on their functioning, activities and
participation in the context of the environment and personal factors.
!
Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the
assessment and support of this population, and advocate for the inclusion of the concerns of
the carer in dysphagia management.
Keywords
Carers, dysphagia, head and neck cancer, ICF,
radiotherapy, third-party disability
History
Received 22 April 2014
Revised 21 December 2014
Accepted 27 April 2015
Published online 18 May 2015
Introduction
Acute and chronic dysphagia is recognized as one of the most
prevalent side effects of definitive non-surgical management for
primary head and neck cancer (HNC). The potential health
effects of dysphagia, such as aspiration leading to pneumonia,
malnutrition and dehydration, are well documented [1–7].
Furthermore, studies investigating the impact of dysphagia
following non-surgical HNC management have demonstrated
associations with depression, social isolation, reduced health-
related quality of life and reduced emotional and social well-being
[8–14]. This research has highlighted the substantial impact of
dysphagia on the life of the individual with the swallowing
impairment, and has emphasized the far-reaching effects of
dysphagia on everyday life. However, given the social nature of
food, meals and meal preparation, it is to be expected that
dysphagia will also impact on the carer of the individual with
dysphagia.
Previous qualitative studies have reported on the pervasive
effects of dysphagia following HNC on the carer. These
effects include concerns and fears regarding managing modified
Address for correspondence: Rebecca L. Nund, BSpPath (Hons), GCHEd,
Division of Speech Pathology, School of Health and Rehabilitation
Sciences, The University of Queensland, St Lucia, QLD 4072, Australia.
Tel: +61 401381277. E-mail: r.nund@uq.edu.au
Downloaded by [UQ Library] at 23:02 15 October 2015
food/fluids and alternative feeding (e.g. gastrostomy), changes to
roles and responsibilities, negative impacts on family dynamics,
difficulties providing appropriate meals, changes to daily routines,
reduced social activities and engagement at social events and
restrictions to the carers’ own diets [15–18]. The majority of these
qualitative studies focused on carers of HNC survivors with a
gastrostomy. Likewise, the one study that focused on carers of
people with dysphagia who did not have a gastrostomy found
similar results indicating that the effects of dysphagia on the carer
go beyond the physical management of a gastrostomy. Therefore,
it is suggested that dysphagia has the potential to result in
numerous negative psychosocial consequences and restrictions on
carers’ social participation, regardless of the severity or the need
for gastrostomy [18].
With the growing body of research regarding the effects of
dysphagia on the carer, there is a need for investigators to use a
consistent and internationally recognized taxonomy when report-
ing outcomes of their studies. This would allow for accurate
comparison between studies that describe and measure the effects
of dysphagia following HNC on the carer. In addition, there is also
a clinical need to use a consistent language to describe the effects
of dysphagia on carers to assist with determining their needs and
the type of intervention required.
The International Classification of Functioning, Disability and
Health (ICF), endorsed by the World Health Organization
(WHO), provides a well-established framework and classification
system for the description of health and health-related states [19].
It views functioning and disability as a dynamic relationship
between an individual’s health condition and contextual factors.
The health and health-related states are described in two parts
including: Body Functions and Body Structures; and Activities
and Participation. The term functioning represents all body
functions, activities and participation, whereas disability is an all-
encompassing term for impairments, activity limitations and
participation restrictions [19]. Additionally, the ICF considers
contextual factors including Environmental Factors and Personal
Factors, allowing the user to consider an individual’s functioning,
disability and health in various fields [19]. Despite the
recognized potential and the successful application of the ICF
to people with both HNC and dysphagia [20–24], no studies to
date have applied the ICF to carers of people with dysphagia
following HNC.
Third-party disability refers to the ‘‘disability and functioning
of family members’’ (p. 251) due to the health condition of
significant others [19]. Though the family member may not have a
health condition, they can potentially experience activity limita-
tions and participation restrictions as a result of the health
condition of their significant other. Third-party disability was
introduced by the WHO in the Annex of the ICF and was
identified as an area for future research and development [19]. A
model based on the ICF to explain third-party disability was
developed by Scarinci et al. [25] in their study investigating the
effects of hearing impairment in older people on the spouse. The
model demonstrates how the functioning and disability of the
person with hearing impairment acts as an Environmental Factor
that affects their spouse’s functioning and disability [25]. Scarinci
et al. [25] noted that the majority of issues reported by spouses
were linked to the Activities and Participation components. This
finding is consistent with definition of third-party disability
proposed by the WHO in that although the spouse did not have a
health condition, they experienced activity limitations and
participation restrictions as a result of the health condition of
their partner (i.e. the partner’s hearing impairment). More
recently, the ICF has also been used to successfully describe
third-party disability in close family members of people with
aphasia [26].
With the emergence of research regarding the effects of
dysphagia on carers of people treated for HNC, it is timely to
explore the possible application of the ICF in this population.
Specifically, this paper aims to: (1) determine whether the
experiences of carers of people with dysphagia following HNC
can be accurately documented using the ICF framework and (2)
identify the most typical and relevant domains and categories of
the ICF for carers in these circumstances. By using the ICF
framework to map the effects of dysphagia on the carer, it is
hypothesized that the broad ranging and pervasive effects of
dysphagia on the carer will be highlighted. Ultimately, this
information may provide evidence for the inclusion of carers in
dysphagia management, and also assist to prioritize areas of
greatest need, so that more targeted management can be provided
to this population.
Methods
Overall study design
The current investigation was the second phase of a larger study
with the overall aim of describing the nature and extent of the
impact of dysphagia following HNC management on carers. The
first phase of the study has been described elsewhere [18]. In
summary, the first phase used a qualitative descriptive method-
ology with aspects of phenomenology [27] to explore the lived
experiences of close family members or carers of people with
dysphagia (non-gastrostomy dependent) following HNC manage-
ment. Thematic analysis, using an inductive approach, was
employed in the first study to identify key issues associated with
dysphagia as reported by carer participants including the effects of
dysphagia on their everyday life [28]. In the second phase reported
here, the qualitative inter view data were applied in a secondary
analysis using the ICF to map the broad effects of dysphagia
following HNC management on the carer. This type of method-
ology has been used previously in studies that have successfully
mapped the effects of hearing impairment on the spouse [25] and of
aphasia on close family members to the ICF [26].
Participants
Carer participants who took part in phase 1 were recruited from a
Multidisciplinary Head and Neck Cancer Clinic at a tertiary
hospital in Brisbane, Australia where their partners had received
curative, non-surgical treatment for a primary HNC cancer
between April 2007 and April 2012. Ethical approval for this
study was obtained from the relevant ethics committees and all
participants provided written informed consent to participate in
this study. To ensure diversity among participants, maximum
variation sampling, a type of purposive sampling, was utilized
with variation sought across gender, age, months since partner’s
treatment, years of relationship and employment status.
Recruitment continued until the study’s criteria for maximum
variation sampling was met (i.e. at least one participant in each of
the maximum variation categories) [28]. Maximum variation
sampling was chosen as any themes to emerge from the data are of
particular interest and value as they highlight the core experience
and shared dimensions of caring for someone with dysphagia
following HNC. Carer participants included those who engaged in
regular shared mealtimes with the individual with dysphagia (i.e.
at least one meal/day). Carer participants were excluded if they
were undergoing or had previously undergone HNC management,
had any pre-existing conditions associated with dysphagia or had
limited English proficiency. In addition, participants were also
excluded if the person with dysphagia following HNC had
received primary surgery, had a co-morbid condition associated
with dysphagia, were receiving enteral nutrition via gastrostomy
2 R. L. Nund et al.
Disabil Rehabil, Early Online: 1–10
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or were considered palliative. The characteristics of the 12 carers
who participated in this study are reported in Table 1.
ICF mapping process
The categories and sub-categories from the previously analyzed
qualitative interviews [18] were linked to the ICF using the
established linking rules [29,30]. Using the established linking
rules ensured that all levels of categorization of the qualitative
interview data were conducted in a systematic and standardized
manner. Two researchers completed the linking of all categories
and sub-categories individually. A third rater was utilized to
resolve any discordance in mapping. In addition, the mapping of
the categories and sub-categories to the ICF was reviewed by the
co-investigators to ensure consensus.
Results
Overview of findings
In the previously reported first phase [18], four themes were
identified from the qualitative interviews, namely: (1) dysphagia
disrupts daily life, (2) carers make adjustments to adapt to their
partner’s dysphagia, (3) disconnect between carers’ expectations
and the reality of dysphagia and (4) experiences of dysphagia-
related services. These four themes were comprised of
19 categories and 26 sub-categories. An in-depth description of
the themes, categories and sub-categories can be found in Nund
et al. [18]. In total, 34 of these 45 categories and sub-categories
were able to be directly linked to 29 ICF codes across Activities
and Participation, Environmental Factors and Body Functions
(Figure 1). The specific ICF codes listed by component (Activities
and Participation, Environmental Factors and Body Functions) are
detailed in Table 2. A total of 11 categories/sub-categories were
not able to be coded. This included seven categories/sub-
categories that pertained to Personal Factors (acceptance of a
new nor mal, attitude, remain hopeful, ‘‘I go out to eat with
friends’’, ‘‘I gave him space’’, trial and error, slowly introducing
food) which are not able to be classified in the ICF, three
categories/sub-categories not covered by the ICF (expectations of
recovery, adjustment takes time and ‘‘it got harder after the
treatment’’) and one item that was not applicable to the effects of
dysphagia on the carer as it was a proxy report of the effects of
dysphagia on other family members.
Activities and Participation component
The most commonly reported issues by carers of people with
dysphagia associated with HNC were linked to the Activities and
Participation component. Table 3 displays the results of mapping
the categories and sub-categories from the qualitative interviews
to the Activities and Participation domains of the ICF. Five
categories from the interview data were linked to seven of the nine
Activity and Participation domains (also called chapters) includ-
ing: interpersonal interactions and relationships; domestic life;
general tasks and demands; learning and applying knowledge;
self-care; major life areas and community, social and civic life.
A summary of the mapping of the categories and sub-categories
from the qualitative interviews to the Activities and Participation
component of the ICF is summarized in the sections that follow.
Interpersonal interactions and relationships domain
Responses indicate that the presence of dysphagia had a
significant impact on the carers’ interactions and relationships
with both their partner and others. These effects were mapped
under the ICF interpersonal interactions and relationships domain
(chapter 7). Difficulties with food and mealtimes which impacted
on the relationship and interactions between the carer and the
partner with dysphagia were mapped to intimate relationships
(spousal relationships – d7701) and general inter personal inter-
actions (tolerance in relationships – d7102) as some carers noted
new strains on their relationships and many felt that their role had
shifted from spouse to carer: ‘‘when you ...[look after] somebody
over a length of time you do become the carer and you do become
the parent’’.
The difficulties at mealtimes also disrupted family relation-
ships as some families no longer ate dinner together, these were
mapped to the family relationships code (family relationships –
d760). Though some carers commented on the support received
from family and friends, many found that their friends (informal
relationships with friends – d7500) and other people in the
community (relating with strangers – d730) did not understand
their partner’s dysphagia which impacted on their interactions and
relationships: ‘‘that is something we probably don’t do is [eat at
friend’s houses] ...they don’t understand the problem of him
swallowing’’.
Domestic life domain
The domestic life domain (chapter 6) was particularly relevant for
carers of people with dysphagia following HNC. Carers reported
an increase in their domestic responsibilities, particularly in
regards to meal preparation (preparing meals – d630). The
complexity of acquiring the most appropriate foods for their
partner: ‘‘trying to find the right foods [was] complex’’ was
linked to routine tasks, such as shopping (shopping – d6200). In
addition, the support and assistance in nutrition (assisting
others in nutrition – d6604) and in other life areas (assisting
Table 1. Demographics of carer participants (n ¼ 12).
Mean or
frequency SD or % Range
Gender
Males 2 16.7%
Females 10 83.3%
Age (years) 53.5 6.29 45–67
Time since partner’s treatment (months) 22.83 17.98 3–60
Length of relationship (years) 23.4 9.9 5–37
Employment status
Paid employment 9 75%
Not in paid employment 3 25%
Relationship to person with dysphagia
Marr ied 10 83.3%
Defacto 2 16.7%
Figure 1. Proportion of categories and sub-categories from qualitative
interviews linked to ICF domains.
DOI: 10.3109/09638288.2015.1046563 Third-party disability in dysphagia following HNC 3
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Table 3. Qualitative research findings mapped to the activities and participation component of the ICF.
ICF domain n ¼ 7
ICF code & code
name n ¼ 17
Corresponding
research categories
Corresponding research
sub-categories Sample participant quote
Interpersonal inter-
actions and
relationships
d760 & Family
relationships
Family life ! Effects on the family mealtime ‘‘we try to all sit together but that
wasn’t happening very much
...he got too frustrated sitting
there and we’re eating and he’s
not’’
d7701 & Spousal
relationships
Family life ! Relationships ‘‘it has just been quite stressful. It
has probably put a lot of strain
on our relationship’’
Carer takes on more
roles
! Household manager or
‘‘parent’’
‘‘when you ...[look after] some-
body over a length of time you
do become the carer and you do
become the parent’’
d7102 & Tolerance
in relationships
Family life ! Relationships ‘‘Even after treatment though his
conversation quite often in the
morning would be about the
fact that he hasn’t put on
weight ...it got a bit tiresome
after a while’’
d730 & Relating
with strangers
Social life and eating
out
‘‘in restaurants ...the majority
have got no idea what you’re
talking about when you say to
them ...‘my husband needs
half the pasta and twice the
sauce’ ...out will come a
standard size pasta and a drizzle
of sauce’’
d7500 & Informal
relationships with
friends
Social life and eating
out
‘‘we still haven’t got to be going
out with friends to dinner ...
which is a tug on the lifestyle.
Just going out to casual eating
isn’t happening yet.’’
Domestic life d6200 & Shopping Meal preparation ! ‘‘Finding the right food is
difficult’’
‘‘The different meals, trying to
find the right food is difficult’’
(continued )
Table 2. Final list of ICF codes mapped using the inter view data.
Activities and Participation n ¼ 17 Environmental Factors n ¼ 11 Body Functions n ¼ 1
ICF Code Name of Code ICF Code Name of Code ICF Code Name of Code
d175 Solving problems e1300 General products and technology
for education
b152 Emotional functions
d2301 Managing daily routine e310 Immediate family
d2302 Completing daily routine e315 Extended family
d2400 Handling responsibility e320 Friends
d2401 Handling stress e325 Acquaintances, peers, colleagues,
neighbours and community
members
d550 Eating e345 Strangers
d6200 Shopping e355 Health professionals
e420 Individual attitudes of friend
d630 Preparing meals e425 Individual attitudes of acquaint-
ances, peers, colleagues, neigh-
bours and community members
d660 Assisting others e450 Individual attitudes of health
professionals
d6604 Assisting others in nutrition e5800 Health services
d760 Family relationships
d7701 Spousal relationships
d7102 Tolerance in relationships
d730 Relating with strangers
d7500 Informal relationships with friends
d870 Economic self-sufficiency
d9205 Socializing
4 R. L. Nund et al. Disabil Rehabil, Early Online: 1–10
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others – d660) commonly provided by carers: ‘‘I tried to ...do all
the jobs ...all the cooking ...all the shopping ...look after the
kids ...I did everything’’ was mapped under the category codes
relating to caring for household objects and assisting others.
General tasks and demands domain
The challenges of coping with daily life changes because of a
partner’s dysphagia were mapped under the general tasks and
demands domain (chapter 2). Carers’ described feeling over-
whelmed and stressed (handling stress – d2401) as they
attempted to adjust to the enforced changes to their routines
that had resulted from their partner’s dysphagia. This was
predominantly in regard to managing the new requirements of
food preparation and mealtimes: ‘‘meal preparation ...takes more
time and effort’’ (managing daily routine – d2301; handling
responsibilities – d2400), and family mealtimes (completing daily
routines – d2302).
Learning and applying knowledge domain
The need for carers to take on a number of new roles in order to
adjust to their partner’s dysphagia was mapped to the learning and
applying knowledge domain (chapter 1). This was particularly
related to the need to become a problem solver (solving problems
– d175) regarding food and mealtime activities (e.g. meal
planning, meal preparation). One participant said: ‘‘[I] have
more of a role than usual as organizer, thinker, problem-solver,
ICF domain n ¼ 7
ICF code & code
name n ¼ 17
Corresponding
research categories
Corresponding research
sub-categories Sample participant quote
d630 & Preparing
meals
Meal preparation ! Food modifications
! Need to think ahead with meals
! ‘‘I’m cooking ...two meals’’
! ‘‘Finding the right food is
difficult’’
! ‘‘It’s more intense and takes a
lot longer’’
‘‘he needs much more sauce ...
and the food smaller, and he
needs to drink milk with his
food’’
Emotions ! Meal preparation ‘‘I was frustrated that I couldn’t
just easily make a meal and put
it on the table’’
Carer takes on more
roles
! Chef ‘‘I do all of the cooking ...I’m
normally the only one in the
kitchen’’
d660 & Assisting
others
Carer takes on more
roles
! Feels unprepared for roles
! Problem solver
! Household manager ‘‘parent’’
‘‘you were just sort of dropped off
and all of a sudden [following
treatment], right we’ve gotta
work this lot out ourselves’’
d6604 & Assisting
others in nutrition
Meal preparation ! Food modifications
! Need to think ahead with
meals
‘‘The major thing is now you have
to orchestrate your meals ...
you gotta plan and organise
your meals and your eating
venue and the meal you have’’
Carer takes on more
roles
! Nutritionist ‘‘I wanted to make sure he was
getting the right foods and that
balance was right’’
General tasks and
demands
d2301 & Managing
daily routine
Meal preparation ! Need to think ahead with meals ‘‘mealtimes ...a lot more thought
went into it’’
d2302 &
Completing the
daily routine
Family life ! Effects on the family mealtime ‘‘he didn’t eat with us or I wasn’t
going to eat at the table with
him ...he’s concentrating so
hard on trying to eat ...he gets
really stressed out’’
d2400 & Handling
responsibility
Emotions
! Meal preparation ‘‘I think I’m the hard done by guy
‘cause I’m the one that has to
make all the special stuff’’
d2401 & Handling
stress
Emotions ! Aspiration and choking
! Weight loss
‘‘That was scary [when patient
aspirated] ...because I didn’t
really know what to do’’
Learning and apply-
ing knowledge
d175 & Solving
problems
Carer takes on more
roles
! Problem solver ‘‘you’ve gotta be able to find
solutions to problems, if you’re
not a problem solver it would be
very difficult’’
Self-care d550 & Eating Family life ! Meal is dictated by needs of
the patient
‘‘I miss my meat but I don’t want
to have it in front of him
because I know he can’t eat it’’
Major life areas d870 & Economic
self-sufficiency
Family life ! Financial effects ‘‘the cost ...we’ve paid $15 for
two mouthfuls’’
Community, social
and civic life
d9205 & Socializing Social life and eating
out
‘‘going out to dinner ...it’s better
not to do it now because it’s just
too hard to find something that
suits [him]’’
Sample participant quote corresponds to the bolded research sub-category.
DOI: 10.3109/09638288.2015.1046563 Third-party disability in dysphagia following HNC 5
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do-er and [partner’s] role was very much the patient who needed
to get better’’.
Self-care domain
The impact of dysphagia on the carers’ eating (eating – d550) was
linked to the self-care domain (chapter 5). Eleven of the 12 carers
noted that their meals were largely dictated by the needs of their
partner: ‘‘I now eat finely chopped veggies’’, with many stating
that they rarely eat food their partner cannot eat. Some carers
explained that they waited to eat these foods when their partner
was not present: ‘‘I have a life outside of my [wife] ...I have
friends I go out and eat with, so I just go and [eat] with them’’.
Major life areas domain
Though not identified as an issue for most of the participants, the
financial effect (economic self-sufficiency – d870) of dysphagia
was noted by one carer participant in the qualitative interviews.
This issue was mapped to the major life areas domain (chapter 8)
of the Activities and Participation component. The financial
effects of dysphagia were discussed with the participant particu-
larly in relation to food wastage: ‘‘the cost ...we’ve paid $15 for
two mouthfuls’’.
Community, social and civic life domain
Changes to carers’ social lives (d9205) as a result of their
partner’s dysphagia were noted by 10 of the participants which
were mapped to the community, social and civic life domain
(chapter 9). The necessary modifications to food meant that eating
out of the home was more challenging. In response to those
challenges, some carers used strategies, such as researching
appropriate restaurants before choosing which restaurant to go to.
Others however, noted that ‘‘it is better not to do it [going out to
dinner] now because it’s just too hard to find something that
suits’’.
Environmental Factors component
Environmental Factors pertain to the physical, social and
attitudinal environment in which people live and conduct their
lives [19]. The results of mapping categories and sub-categories
from the qualitative inter views to the Environmental Factors
component of the ICF are presented in Table 4. In total,
10 categories/sub-categories from the qualitative interviews
linked to four domains (support and relationships; attitudes;
products and technology and services, systems and policies), and
11 Environmental Factor codes.
Support and relationships domain
Support and relationships (chapter 3) were identified as a
particularly relevant domain. In particular, carers identified the
support of both immediate (immediate family – e310) and
extended family (extended family – e315) as important factors
influencing carer function. The support received from friends
(friends – e320) and other carers who were both familiar
(acquaintances, peers, colleagues, neighbours and community
members – e325) and unfamiliar (strangers – e345) to the carers
was also mapped under this domain as an important facilitator:
‘‘there was a fellow that was a month ahead of us in
treatment ...his wife and I still keep in contact ...so that [I]
can get a feel of how they’re going and compare ...and ...bounce
some ideas’’. Finally, the support from the speech and language
therapist and the dietician (health professionals – e355) was also
identified as both a facilitator and barrier to carer functioning.
Though some carers found the services of the speech language
therapist and the dietician a helpful facilitator: ‘‘[they were] really
good they gave us a lot of ideas on what I could cook’’, others felt
that they ‘‘didn’t get a lot of support through the hospital so [sic]
far as food’’. In particular, carers desired ongoing contact with
health professionals following treatment:‘‘that would have been
much more helpful ...having someone to talk to or relate to even
ongoing afterwards ...even if they rang me and said ‘how are you
getting on’ and gave me some ideas’’.
Attitudes domain
The attitudes of different groups of people towards dysphagia
were also found to act as facilitators or barriers to carer
functioning. In particular, the attitudes of friends (individual
attitudes of friends – e420), other carers (individual attitudes of
acquaintances, peers, colleagues, neighbours and community
members – e425) and health professionals (individual attitude of
health professionals – e450) were mapped to this domain (chapter
4). For example, some carers and their partner’s with dysphagia
no longer went to friends houses for dinner as ‘‘they [our friends]
don’t understand the problem of him swallowing ...they don’t
think about it’’.
Products and technology domain
The desire for more practical resources and information (general
products and technology for education – e1300) from health
professionals, regarding how to make appropriate meals for their
partners with dysphagia, was mapped to products and technology
domain (chapter 1) of the Environmental Factors component.
Further to this, half of the carers thought the information that was
provided regarding food and mealtimes needed to be more
personalized to their partner’s situation (general products and
technology for education – e1300): ‘‘they [the speech and
language therapist and dietician] gave us plenty of handout
sheets but they were ...terribly general and not specific [to our
situation]’’.
Services, systems and policies
Services, systems and policies (chapter 5) were the final
Environmental Factors domain that was identified as relevant to
carers of people with dysphagia following HNC. Seven categories
from the qualitative interviews were mapped to the health ser vices
code (health services – e5800). In particular, a number of carers
spoke about the need for ongoing support throughout the trajectory
of care: ‘‘we had no one to talk to ...once your treatment was
finished ...there is no one to talk to. It is like your’re gone ...’’
Body Functions component
In the context of health, Body Functions refer to the physiological
functions of the body systems including psychological functions
[19]. There are eight domains (chapters) that are identified in the
ICF including: (1) mental functions; (2) sensory functions and
pain; (3) voice and speech functions; (4) functions of the
cardiovascular, haematological, immunological and respiratory
systems; (5) functions of the digestive, metabolic and endocrine
systems; (6) genitourinary and reproductive functions; (7)
neuromusculoskeletal and movement-related functions and (8)
functions of the skin and related structures. Only one of the
categories from the qualitative interviews was mapped to a Body
Functions domain.
Mental functions domain
The emotional responses of carers to their family member’s
dysphagia were linked to the mental functions domain (chapter 1).
6 R. L. Nund et al.
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The emotions that were mapped to the ICF included frustration
(emotional functions – b152), fear (emotional functions – b152),
worry/concern (emotional functions – b152) and sympathy
(emotional functions – b152). These emotions were expressed
by carers particularly in regard to changes to meal prepar-
ation, aspiration and choking and their partner’s significant
weight loss: ‘‘I find it frustrating because I know she has still got
to put weight on’’.
Discussion
The current study has provided a comprehensive overview of the
potential application of the ICF to describe third-party disability
Table 4. Qualitative research findings mapped to the environmental factors component of the ICF.
ICF domain n ¼ 4
ICF code & code
name n ¼ 11
Corresponding research category
(+sub-category) Sample participant quote
Support and
relationships
e310 & Immediate
family
! Family ‘‘my daughter-in-law she is a great
cook and she baked lots of things
and still does for him ...he wasn’t
always able to eat them’’
e315 & Extended
family
! Family ‘‘we were very lucky ...that we had
support within the family that
understood nutrition’’
e320 & Friends ! Friends ‘‘if they’re real friends ...they will
accommodate you’’
e325 &
Acquaintances,
peers, colleagues,
neighbours and
community
members
! Other carers (in waiting room) ‘‘there is nothing like talking with
people [who] have gone through
the same thing ...just to know
that ...what your experience is ...
is normal or is not normal’’
e345 & Strangers ! Other carers (in waiting room) ‘‘even if you had people you could
contact by email ...you know like a
chat room sort of thing that you
could post up something and
someone chucks their two bobs
worth to it’’
e355 & Health
professionals
! Infor mation needs to be practical
! Support given throughout
trajectory of care
! Infor mation need to be given in
‘‘patient language’’
! Infor mation should be
personalized
! Roles were not clear – their big
thing was weight
‘‘we didn’t get a lot of support through
the hospital so far as food’’
Attitudes e420 & Individual
attitudes of
friends
! Friends ‘‘they don’t understand the problem of
him swallowing ...they don’t think
about it’’
e425 & Individual
attitudes of
acquaintances,
peers, colleagues,
neighbours and
community
members
! Other carers (in waiting room) ‘‘it is good to sit and talk to somebody
who’s going through the same thing
you are .... You can get
ideas ...somebody gives you the
recipe ...they’ve been through it,
they can help you’’
Products and
technology
e1300 General prod-
ucts and technol-
ogy for education
!
Information needs to be
practical
! Infor mation needs to be
personalized
‘‘if they could make up sheets ...from
people who’d been there to say this
is what didn’t work or that worked
with this modification’’
e450 & Individual
attitudes of health
professionals
! Support given throughout
trajectory of care
! Information should be
personalized
‘‘They give you a lot of information to
read ...but each person is different
and it tells you about symptoms but
doesn’t take into consideration the
personality of the person’’
Services, systems
and policies
e5800 & Health
services
! Carer takes on more roles
! Feels unprepared for role
! Infor mation needs to be practical
! Support given throughout trajec-
tory of care
! Information needs to be given in
‘‘patient language’’
! Infor mation should be persona-
lized
! Roles were not clear – their big
thing was weight
‘‘The explanations before treat-
ment ...sore throat, you may not be
able to produce saliva ...was put in
a medical way but the reality is the
human element ...no one tells you
about that’’
Sample participant quote corresponds to the bolded research category.
DOI: 10.3109/09638288.2015.1046563 Third-party disability in dysphagia following HNC 7
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in carers of people with dysphagia following HNC. The ICF
appears to be a useful framework to describe the functioning of
carers of people with dysphagia as the majority of issues
identified by the carer participants (34/45 categories and sub-
categories) were able to link to at least one, in some cases
multiple, ICF category codes. In particular, multiple issues were
clearly linked with the Activities and Participation components.
This is consistent with the work by Scarinci et al. [25] and
Grawburg et al. [26] who both noted that the Activities and
Participation component was the most relevant component of the
ICF for spouses of older people with hearing impairment and
close family members of people with aphasia, respectively.
Further to this, the findings from the current study are consistent
with the nature and def inition of third-party disability. That is,
although the carer of an individual with dysphagia following HNC
treatment does not have a health condition themselves, they are
likely to experience activity limitations and participation restric-
tions as a result of the health condition of their partner [25]. The
subset of 29 ICF codes identified in the current study could be
utilized by both researchers and clinicians to provide more
targeted and holistic support for this population.
Results of this study indicate that there are a number of Activity
and Participation domains, beyond the domain pertaining to eating
and drinking (chapter 5 – Self Care), which are relevant to the
effects of dysphagia on carers. This highlights both the pervasive
effects of dysphagia, and the importance of food and meals, which
underpin a number of life areas for carers. The communication
domain and the mobility domain were the only domains that were
not identified as being affected by dysphagia following HNC,
though some of the categories and sub-categories from the
qualitative data could have also potentially mapped to these
domains/chapters. For example, the sub-category effects on the
family mealtime was mapped to both d2302 (completing the daily
routine) and d760 (family relationships) to reflect both the
disruption to the family routine and the impact on family
relationships. It is acknowledged however, that this particular
sub-category could also potentially map to the communication
domain as reflected in the quote: ‘‘we [don’t] sit at the table ...
there is less talk ...less other things happening ...because he can’t
eat’’. It is recommended that future research should explore the
potential impact of dysphagia on communication interactions at
mealtimes.
It should also be acknowledged, that difficulties reported by
carers, which were mapped to the Activities and Participation
component, were generally determined to be performance prob-
lems, in the absence of impairments or capacity limitations. In the
ICF, performance ‘‘describes what an individual does in his or her
current environment’’ (p. 15) [19], whereas capacity ‘‘describes
an individual’s ability to execute a task or an action’’ (p. 15) [19].
The gap between performance and capacity is therefore related to
the difference between current and uniform environment [19]. For
example, a number of carers in the current study reported
difficulties with meal preparation because of their partner’s
dysphagia. These difficulties were not related to impairments in
the carers’ Body Functions, or even the carers’ capacity to prepare
a meal. Rather, carers experienced difficulties in the performance
of meal preparation events in the context of their current
environment (i.e. as carers they now faced difficulties in preparing
meals because their partner with dysphagia had specific require-
ments regarding food and fluids).
The emotional responses to dysphagia described by carers in
the current study were coded as impairments in Body Functions
under the mental functions domain. It is acknowledged that in the
literature there has been some discussion regarding whether these
types of codes are impairments or whether they are simply
Personal Factors relating to the various adjustments that have
been made. Threats [31] stated that ‘‘these characteristics are only
classified as Body Function impairments when their limitation is
considered pathological’’ (p. 69) and in order to distinguish
between the two, Threats [31] suggested the need to determine
whether the personality characteristic existed before the onset of
the disorder. In the current study, the carer participants specif-
ically related their emotional responses to issues surrounding their
partner’s dysphagia; hence, the authors coded these as impair-
ments in Body Functions. Nevertheless, the participants pre-
morbid psychological functioning could not be determined in the
current study and therefore it is possible that the emotions
described by participants were present before the onset of their
partner’s dysphagia. Conversely, given that previous research has
documented clinical levels of distress in carers of people with
dysphagia [32], it is possible that the current study has not
highlighted all the possible mental function codes that are
applicable to carers of people with dysphagia.
Participants also described a large number of contextual
factors, namely Environmental Factors that influenced their third-
party functioning and disability. Although the carers in the study
did not have a health condition, they experienced activity
limitations and participation restrictions as a result of the
functioning of their partner’s dysphagia (an Environmental
Factor). Though the important role of the carer in the management
of an individual with dysphagia following HNC is generally
acknowledged by clinicians, many health professionals concen-
trate on providing services to the person with dysphagia. Given
that in other settings, direct associations have been found between
carer psychological health and patient outcomes [33,34], an
awareness of a carer’s psychological health and coping abilities
are important considerations for clinicians working with this
population. Providing a more holistic and family-centered
approach in the management of dysphagia following HNC may
not only help the carer, but may also result in more positive long-
term outcomes for the individual with dysphagia.
Previous research in other populations has demonstrated that
including family members in interventions can be effective in
improving health outcomes and reducing mental health issues for
both the client/patient and their family [35–37]. This could be
achieved in the current population by changing clinical practice to
deliver: carer specific information regarding the effects of
dysphagia associated with HNC, individual clinical sessions
with carers to support their adjustment to dysphagia, and skill
building sessions that include dysphagia-specific management
activities, such as meal planning, food shopping and preparation
of texture modified diets [38]. Further research is required to
evaluate these, and other, innovative services so that clinicians
can better meet the needs of carers of people with dysphagia
following curative HNC management.
A number of categories and sub-categories to emerge from the
qualitative interviews were identified as potential Personal
Factors which are not currently classified in the ICF.
Simeonsson et al. [39] recently recommended that due to the
absence of formal codes, careful consideration should be given to
the documentation of Personal Factors and therefore Personal
were not specifically coded in this study. Despite this, partici-
pants’ functioning appeared to be moderated by overall behavior
patterns and coping styles (identified as possible Personal Factors
in the ICF) [19], which carers adopted in order to adjust to their
partner’s dysphagia. ‘‘Remaining hopeful’’ was one of the
categories that was identified as a possible mechanism of
adjustment for carers. Clearly, many believed that the side effects
of treatment would be transient rather than permanent, which
highlights a further disconnect between carers expectations, their
understanding of information provided and the reality of dyspha-
gia. Hope has been recognized as central to the coping and
8 R. L. Nund et al.
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adjustment of family members in other populations [40] and
intervention programs designed to decrease pessimism and
stimulate hope in long-term survivors of HNC in order to
improve quality of life have been proposed [41]. This type of
intervention program could also potentially be extended to include
carers of HNC survivors and is an area for future work.
Though the ICF provided a useful framework to explore the
third-party disability in carers of people with dysphagia following
HNC, some limitations were evident. In particular, whilst the
categories and sub-categories from the qualitative interviews
could be linked to specific ICF codes, the implications of those
codes extended fur ther than can currently be captured by the ICF.
For example, meal preparation is defined in the ICF as ‘‘planning,
organizing, cooking and serving simple and complex meals for
oneself and others, such as by making a menu, selecting edible
food and drink, getting together ingredients for preparing meals,
cooking with heat and preparing cold foods and drinks and
serving the food’’ (p. 154) [19]. Yet meals have been described as
fundamental to our daily thinking and are a core element of the
way in which we organize our days [42]. Providing meals is more
than executing a task. It is one of the most salient ways of
providing care and signifying love and concerns to our significant
others [16,43]. Therefore, to limit meal preparation to this
definition undervalues the significance of the emotional, psycho-
logical and social aspects of food preparation and its role in
caregiving. The current definition of food preparation therefore is
likely to underestimate the pervasive effects of dysphagia
following HNC on the functioning of the carer. This should be
a consideration in any future revision of the ICF. In addition,
though the current study provides an important first step in
exploring the application of the ICF to carers of people with
dysphagia, further research is required to determine the level of
agreement between different researchers in applying the linking
rules to this population.
Conclusion
The current study has successfully used ICF terminology to
describe the third-party disability in carers of people with
dysphagia following HNC, though some limitations were noted.
Mapping the difficulties faced by carers of people with dysphagia
following HNC has highlighted how dysphagia can be an
Environmental Factor that impacts on the functioning of carers.
Using a framework, such as the ICF in clinical practice, can assist
clinicians to highlight areas of greatest need, and deliver more
targeted support and management to this population. It also
provides a framework to record evidence on the needs of the carer
in dysphagia management.
Declaration of interest
The authors report no conf licts of interest.
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