The Experience in Neurorehabilitation Setting: a Qualitative Study

In this exploratory qualitative study with a hermeneutic phenomenological approach, we will describe and understand the experience of treatment and hospitalization in hospitalized people suffering from stroke, multiple sclerosis, Parkinson\'s disease and patients post-neurosurgery for oncological causes. Patients will be interviewed in a semi-structured manner and sampling will take place for each of the pathology groups according to the saturation method.

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.