The Experience in Neurorehabilitation Setting: a Qualitative Study (NURSEXPERIENCE)

February 8, 2024 updated by: IRCCS San Camillo, Venezia, Italy

"The Experiences of Care Lived by People Admitted to Neurorehabilitation: a Qualitative Exploratory Study With a Phenomenological Approach

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.

Study Overview

Status

Recruiting

Conditions

Intervention / Treatment

Detailed Description

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.

Study Type

Observational

Enrollment (Estimated)

40

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

N/A

Sampling Method

Non-Probability Sample

Study Population

Patients with Stroke, Multiple Sclerosis, Parkinson's Disease and post-operative Neurosurgery patients admitted to the IRCCS San Camillo will be recruited.

Description

Inclusion Criteria:● Patients hospitalized at the IRCCS San Camillo.

  • patients in Stroke, Multiple Sclerosis, Parkinson's Disease and post-operative patients in Neurosurgery for oncological pathology
  • Patients who have given valid consent.
  • Patients able to understand, read and speak Italian.
  • Aphasic patients without comprehension deficits and able to communicate effectively with augmented communication media.
  • hospitalized for at least 21 days and not close to discharge, or that this occurs at least after 21 days.

Exclusion Criteria:● Patients unable to give valid consent.

  • Minor patients or patients over 85 years of age.
  • Patients with cognitive deficits such that they cannot effectively support the interview.
  • Patients with psychiatric pathology
  • Patients unable to understand, read and speak Italian.
  • Patients with pathologies for which they are not undergoing neurorehabilitation treatment.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
Patients with stroke
Patients with stroke during the hospital neurorehabilitation
Other: semi structured interview
semistructured interview on patient's experience of hospitalization.
People with Parkinson's disease
patients with Parkinson's disease the hospital neurorehabilitation
Other: semi structured interview
semistructured interview on patient's experience of hospitalization.
Patients with multiple sclerosis
Patients with multiple sclerosis during the hospital neurorehabilitation
Other: semi structured interview
semistructured interview on patient's experience of hospitalization.
Patients post operative oncological neuro surgery
Patients after oncological neurosurgical operation during the hospital neurorehabilitation
Other: semi structured interview
semistructured interview on patient's experience of hospitalization.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
narrative contents
Time Frame: 30- 40 minutes of interview
the personal experience of hospital stay in neurorehabilitaion setting
30- 40 minutes of interview

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

IRCCS San Camillo, Venezia, Italy

Investigators

  • Principal Investigator: Alberto Camuccio, doctor, IRCCS San Camillo

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

March 15, 2023

Primary Completion (Estimated)

December 8, 2024

Study Completion (Estimated)

March 15, 2025

Study Registration Dates

First Submitted

February 8, 2024

First Submitted That Met QC Criteria

February 8, 2024

First Posted (Actual)

February 16, 2024

Study Record Updates

Last Update Posted (Actual)

February 16, 2024

Last Update Submitted That Met QC Criteria

February 8, 2024

Last Verified

February 1, 2024

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 2023.03
  • Studio 1574 /IRCCS San Camillo (Other Identifier: CESC di Venezia e IRCSS San Camillo)

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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