This is an exploratory qualitative study with a hermeneutic phenomenological approach on a
cohort of patients hospitalized at San Camillo IRCCS.
Description of the study Type of patients: Patients in neurorehabilitation with stroke,
Multiple Sclerosis, Parkinson's, post surgery in neurosurgery for oncological pathology. In
fact, the recent systematic review on the topic of perception of well-being in elderly people
with stroke admitted to neurorehabilitation by Lafiatoglu et al. (2022) highlights 5 themes
in the literature that influence the perception of well-being in patients: rehabilitation
processes; identity and self-perception problems; institutional factors; experience of caring
and participation in other creative activities during hospitalization.
From another perspective, not referring to well-being, but to the hospitalization experience
itself, the systematic review by Luker et al. (2015) examining 31 studies highlighted how all
reported negative rehabilitation experiences, including helplessness, boredom and
frustration, lack of control, lack of understanding and lack of effective communication.
Rosewilliam et al. (2011) also point to negative experiences and various barriers that hinder
the application of a patient-centered goal-setting model in stroke rehabilitation practice.
Finally, the review by Neils-Strunjas et al. (2017) explored the construct of resilience in
the rehabilitation of adults with ABI concluding that resilience plays a vital role in the
recovery and rehabilitation process by amplifying individuals' emotional adjustment and
adjustment after ABI.
There appears to be less literature referring to patients with multiple sclerosis, although a
trend has recently developed in Germany that welcomes the perspectives of patients in
rehabilitation. The considerations of Gaidar et al appear important to us. (2022) and Geisler
et al. (2020) who instead note the lack and consequently the need for patients with MS to be
involved in decision making processes regarding their own care and rehabilitation as a major
theme in the hospitalization experience, while other aspects present in patients with stroke
, they don't seem to emerge.
There is a fair amount of literature dedicated to the life experiences of people suffering
from Parkinson's disease (Soundy et al. 2014), however qualitative studies dedicated to the
experiences of hospitalization in a rehabilitation context are very limited.
Even less described, again in the hospital rehabilitation setting, are the experiences of
patients who have rehabilitation after neurosurgery (Loomis & Wakasa, 2020); focusing these
either on the oncological aspects of experience or on the surgical and intensive care ones
(Greenberg et al. 2006).
But the peculiarities of the life experience of this type of patients during hospital motor
rehabilitation, often still bedridden, often still waiting for further oncological therapies,
are not yet described.
Phenomenology refers to both a philosophical current and a research approach, it was founded
by Husserl and subsequently developed by Heidegger. It aims to understand people's lived
experience.
In our study it was decided to adopt a hermeneutic-interpretive approach because the
researcher's posture during interviews based on epochè is difficult to maintain in a hospital
context when the researchers still belong to the hospital staff itself.
Concretely, a typical qualitative and narrative research tool will be used [Charon, 2001;
Winding & Whiteford, 2005; Pringle et al, 2011; Ambrosi & Canzan, 2013; Fleming et al, 2013]:
specifically semi-structured interviews.
This choice will allow us to get as close as possible to understanding the meaning of the
experience lived by the patients involved.
In fact, as is known, the object of the phenomenological gaze is not the experience in itself
but the experience lived by a subject in a precise moment of his life and the personal
meaning that it comes to take on for him and for his history. of life.
Razionale In neurorehabilitation, the literature agrees in giving great value to the
hospitalization environment, as well as to the activities and the relationship, not
necessarily focused on therapy, with the staff. This literature is particularly developed,
mainly with qualitative studies, with patients suffering from ABI, Acquired Brain Injuries,
in fact mainly stroke.
Objective:
The objective of this study is to describe and understand the experience of treatment and
hospitalization in people admitted to neurorehabilitation suffering from stroke, multiple
sclerosis, Parkinson's disease and patients post-neurosurgery for oncological causes.
Methods:
Patients admitted to neurorehabilitation who belong to the following pathologies will be
selected according to sampling for saturation: stroke, multiple sclerosis, Parkinson's
disease and post-neurosurgery for oncological causes. The patient who meets the inclusion and
exclusion criteria, after 21 days of hospitalization which must have elapsed without
transfers or acute phases even if treated within the IRCCS San Camillo, will be contacted by
a researcher of the research project who will illustrate and will explain the research
project in a comprehensive and comprehensible manner in order to obtain valid consent.
Once consent has been obtained, the best time to carry out the interview will be agreed with
the patient, which will be semi-structured in nature and based on a grid of questions aimed
at exploring the patient's hospitalization experience and perception of care.
A duration of approximately 45 minutes per interview is assumed. The interviews will be
carried out by specially trained researchers. To test the semi-structured interview grid,
four to five pilot interviews will be carried out which will not then be part of the sample
to be analyzed with content analysis.
Given the scarcity of literature on the topic, with the exception of that relating to
patients hospitalized in neurorehabilitation with stroke, the pilot interview phase will also
serve to refine the interview grid.
The analysis of the interviews will take place with the content analysis software Atlas ti©
(22 or 23).The variables referring to socio-demographic and clinical data and those referring
to the Barthel and FIMM scales will be treated using descriptive statistics. Specifically,
the normally distributed variables will be presented using the mean and standard deviation,
the variables with asymmetric distribution will be presented using the median and
interquartile range, while the categorical variables by means of absolute values and
frequencies.
The analysis of the narrative material of the interviews will take place according to the
following phases.
1. Pre-analysis phase:
All the collected text will be transcribed verbatim into a word file, then read
repeatedly by the researchers to familiarize themselves with the material (holistic
reading) and arrive at an overall vision; then introduced in "Atlas ti" (22 or 23)
(Scientific Software Development GmbH, Berlin, Germany), a computer program developed to
aid the coding process in qualitative research that belongs to the CAQDAS category.
2. Material exploration phase:
In this phase all the material is processed by the Atlas ti software which creates
hermeneutic units and quotations which will serve as a basis in the analysis of the
codes and families that arise from the processing of the Hermeneutic Units. . In this
phase the coding work will be carried out by two researchers who will independently
proceed with the analysis according to a method consistent with the Gadamerian "art of
texting".
3. Interpretation phase In this phase the final coding structure, and the raw data it
contains, is processed in order to restore meaning and validity, allowing the researcher
to organize the results in tables, diagrams, figures, or by creating a network that
shows the deducible relationships between the codes inside families It is not possible
to indicate a priori a sample size given the choice of saturation sampling. 10 per
cohort are assumed.
As Expected Results are expected Identification of the most relevant themes and aspects to
consider during hospitalization to carry out neurological rehabilitation.
Description of experiences lived by people hospitalized in neurological rehabilitation
Identification of factors that can contribute to making hospitalization pleasant.
Formulation of new hypotheses to explore the relationship between hospitalization experience
and clinical outcomes.
