Patient Experiences of Swallowing Exercises After Head and Neck Cancer: A Qualitative Study Examining Barriers and Facilitators Using Behaviour Change Theory
Dysphagia
DOI 10.1007/s00455-017-9799-x
ORIGINAL ARTICLE
Patient Experiences of Swallowing Exercises After Head and Neck
Cancer: A Qualitative Study Examining Barriers and Facilitators
Using Behaviour Change Theory
Roganie Govender1,2 • Caroline E. Wood3 • Stuart A. Taylor4 • Christina H. Smith5 •
Helen Barratt6 • Benjamin Gardner7,8
Received: 17 January 2017 / Accepted: 8 April 2017
The Author(s) 2017. This article is an open access publication
Abstract Poor patient adherence to swallowing exercises
is commonly reported in the dysphagia literature on
patients treated for head and neck cancer. Establishing the
effectiveness of exercise interventions for this population
may be undermined by patient non-adherence. The purpose
of this study was to explore the barriers and facilitators to
exercise adherence from a patient perspective, and to
determine the best strategies to reduce the barriers and
enhance the facilitators. In-depth interviews were conducted on thirteen patients. We used a behaviour change
framework and model [Theoretical domains framework
and COM-B (Capability–opportunity–motivation-behaviour) model] to inform our interview schedule and
structure our results, using a content analysis approach.
The most frequent barrier identified was psychological
capability. This was highlighted by patient reports of not
clearly understanding reasons for the exercises, forgetting
to do the exercises and not having a system to keep track.
Other barriers included feeling overwhelmed by information at a difficult time (lack of automatic motivation) and
pain and fatigue (lack of physical capability). Main facilitators included having social support from family and
friends, the desire to prevent negative consequences such
as long-term tube feeding (reflective motivation), having
the skills to do the exercises (physical capability), having a
routine or trigger and receiving feedback on the outcome of
doing exercises (automatic motivation). Linking these
findings back to the theoretical model allows for a more
Electronic supplementary material The online version of this
article (doi:10.1007/s00455-017-9799-x) contains supplementary
material, which is available to authorized users.
& Roganie Govender
3
Caroline E. Wood
UCL Centre for Behaviour Change, Research Department of
Clinical, Educational and Health Psychology, University
College London, London, UK
4
Stuart A. Taylor
Centre for Medical Imaging, University College London,
London, UK
5
Christina H. Smith
Division of Psychology & Language Sciences, University
College London, London, UK
6
Helen Barratt
Department of Applied Health Research, University College
London, London, UK
7
Department of Psychology, Institute of Psychiatry,
Psychology and Neuroscience (IoPPN), Kings College
London, London, UK
8
Department of Epidemiology & Public Health, University
College London, London, UK
Benjamin Gardner
1
Research Department of Behavioural Science & Health,
University College London, London, UK
2
University College London Hospital, Head and Neck Cancer
Centre, London, UK
123
R. Govender et al.: Barriers and Facilitators to Swallowing Exercises After Head and Neck Cancer…
systematic selection of theory-based strategies that may
enhance the design of future swallowing exercise interventions for patients with head and neck cancer.
Keywords Dysphagia Swallowing exercises
Adherence Behaviour change Qualitative interviews
Content analysis Theory-based interventions
Background
Rehabilitation of swallowing function after treatment for
head and neck cancer (HNC) requires patients to adhere to
swallowing exercise interventions. However, adherence is
generally reported to be poor [1–3]. Studies aiming to
establish the effectiveness of exercise interventions for this
population often neglect this aspect [4, 5], and may consequently portray effective interventions as ineffective.
Improving patient adherence is one way of optimizing
interventions prior to evaluation, although the most effective methods to improve adherence remain unclear. Techniques to increase adherence are likely to be more effective
if they are informed by in-depth exploration of patients’
experiences of their swallowing exercises, probing both
barriers and facilitators to adherence.
Patients presenting with HNC undergo a protracted
journey from diagnosis through to treatment, rehabilitation
and long-term follow-up with up to two-thirds experiencing
dysphagia before treatment [6]. The swallowing sequelae
of surgical and non-surgical treatments are well documented and often predictable [7–9]. Clinicians have a
unique opportunity to intervene early in the patient pathway [10, 11], and establish swallowing exercise programmes that may potentially enhance post-treatment
outcomes [3, 12–18]. In a retrospective study of prophylactic swallowing exercises, patients who adhered most to
their exercises were more likely to be tolerating a more
regular diet one month post-treatment than non-adherers.
Similarly, dependency on a gastrostomy tube was reported
to be higher in patients who were non-adherent to exercises
[19].
Some work has been undertaken to understand underlying reasons for non-adherence to swallowing exercises.
In a telephone survey, Shinn et al. [1] reported that rates of
complete non-adherence (did not do the exercises at all)
were high (55%) with a further 36% reporting only partial
adherence. Common reasons given by patients for nonadherence were as follows: not having a swallowing
problem at the time and lack of understanding of the need
for exercises, finding exercises difficult, forgetting to do
them, being too busy, experiencing pain, nausea and
fatigue.
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A more recent study [20] examined adherence to a
12-week preventative programme and investigated whether
demographic (age, gender), clinical (tumour site and stage,
and treatment modality) and health-related quality of life
(HRQOL) were associated with exercise performance. The
percentage of patients who adhered to the programme at
least once daily for the duration of the study was 70% at
6 weeks, dropping to 38% at week 12. The addition of
chemotherapy to the radiotherapy regime was the only
significant factor associated with poorer exercise performance. This concurs with the findings of Shinn et al. [1]
who reported that pain, nausea and fatigue in patients
having chemo-radiation were barriers.
Previous studies have used mainly deductive methods to
identify reasons for non-adherence, based on commonly
endorsed researcher-generated ideas. Inductive methods
using in-depth interviews that seek to spontaneously elicit
the reasons, belief systems, attitudes and underlying values
from patients provide a rich source of context-relevant
information from a patient perspective. This may yield
important additional barriers to exercise performance and
adherence that may be highly relevant, but possibly less
intuitive to the researcher. As this approach elicits the
overa (...truncated)
