Introduction
Dysphagia is a serious disorder with the potential of psychologically
and socially affect patients1. Consequences may
include malnutrition, dehydration and respiratory complications which
affect the patient’s quality of life and are responsible for increasing
number of hospital admissions. Psychosocially the effect of dysphagia
can be devastating, compromising patient’s wellbeing and impairing
social and family relationship1-3.
The food modifications imposed by dysphagia can make the meal time
uncomfortable, difficult and even cause physical and emotional
suffering4. For humans, food goes far beyond caloric
and water requirements for their survival. Eating is also considered a
social and pleasurable act, and food is seen as a source of pleasure,
mediated by different flavours, consistencies and
appearances1-5. Adaptations imposed by the presence of
dysphagia lead to food selection and restriction, modifying social
activities and daily routines1,2.
For the effective management of oropharyngeal dysphagia, it is important
to consider the patient’s functional health status and to assess the
impact of dysphagia on functional and psychosocial
aspects1. A diagnosis of dysphagia alone or with other
functional comorbidities is related to a poorer prognosis and more
demanding rehabilitation. This is due to the risk of malnutrition during
post-hospitalization and of respiratory complications that may
compromise the rehabilitation1,6. Dehydration is
another possible consequence that interferes with the recovery of the
patient - although diet modification does not present pulmonary risks
and thickeners respect water bioavailability, the water supply may be
insufficient. The use of thickener impairs the water supply due to a
voluntary reduction of fluid intake related with a lower drive to
consume liquids7-9.
There is a paucity of studies regarding the psychosocial impact of
dysphagia. This chronic condition erodes patient’s quality of life,
psychosocial well-being and satisfaction10,11.
Comprehensible information for patients and caregivers is known to
reduced psychological impact of the diseases and enhance satisfaction
with health care9.Studies carried out in several
clinical areas indicate however that patients desire more information
about symptoms, biopsychosocial consequences, pain management and
therapy management14-17.The information received at
the time of hospital discharge for example is generally described as
insufficient and/or unspecific, in opposition to patient’s preferences
for individualized, complete and simple information. Knowledge acquired
through information delivery allows patients to better cope with
therapy, having a positive impact on anxiety management. More informed
patients and caregivers are more autonomous and self-confidents in their
ability to deal with symptoms, and more prepared for shared
decision-making9,14,15.
The information delivered to the patient during hospitalization allows
him to create a realistic perspective and expectations of his illness,
facilitating the assessment and management of necessary changes.
Planning the information to be given before discharge is important to
prevent most of the doubts after discharge9,14,15.
After the diagnosis, it is necessary to instruct patients with dysphagia
on swallowing strategies, how to prepare solid and liquid food,
establish the rehabilitation plan and advise about signs of
complications1,5,16. Clear and defined terminology
capable of guiding the production of different food consistencies is
necessary to ensure the patient’s clinical condition and the evolution
of the swallowing therapy. It is essential that all the professionals in
the team are conscious of the safest diet for each patient and that they
use the same standardized language1,16. The provision
of written information can avoid confusion in the language used and
consequently in the diet adopted, and reinforce the indications given by
the speech and language therapist after clinical and instrumental
evaluation1,16,17.
The purpose of this exploratory study was to evaluate the impact of an
original booklet in the subjective wellbeing, satisfaction with
communication and knowledge about dysphagia and to compare it with the
routine delivery of information about the disease and treatment.