Neuroscience Nursing: studio sui bisogni fondamentali della persona con patologia neurodegenerativa

Background: This doctoral thesis explores the role of nursing care within the field of neurosciences, with a specific focus on neurodegenerative diseases and the Fundamentals of Care (FOC). Neurodegenerative disorders, including Parkinson's disease, Alzheimer's disease, and various dementias, pose increasing challenges for healthcare systems worldwide, significantly affecting the quality of life of patients and caregivers. Despite the recognized importance of nursing care in this area, the literature reveals a shortage of targeted research and a fragmented application of FOC. Methods: The research was structured into two main phases: a scoping review of the literature and a mixed-methods clinical study, OFF-PARK, investigating quality of life in Parkinson’s disease patients concerning bowel care needs. The scoping review analyzed studies published over the last decade in English or Italian, mapping key nursing research topics in neurodegenerative conditions. The OFF-PARK study combined qualitative data—collected via focus groups and semi-structured interviews (phenomenological-interpretive approach)—with quantitative data to explore the impact of constipation on quality of life among Parkinson’s patients using Transanal Irrigation (TAI). It also validated the Italian version of the Cleveland Clinic Constipation Score (Wexner scale) for clinical assessment. Results: The scoping review included 351 articles, organized into a Nursing Data Matrix integrating the nursing metaparadigm with the 4D Framework (Description, Delivery, Development, Discovery) using an adaptation of the CHNRI method. Analyses revealed a predominance of studies focused on Parkinson’s and Alzheimer’s diseases, with less attention to rarer conditions such as amyotrophic lateral sclerosis and myasthenia gravis. Significant gaps emerged regarding innovative interventions and the integration of FOC, leading to the identification of new research priorities. The OFF-PARK study involved three focus groups with stakeholders and 27 semi-structured patient interviews. Qualitative analysis identified three macro-cathegories: the psychological and physical impact of constipation, social and relational support, and interactions with healthcare providers. Among the 27 patients, 10 used TAI for constipation management. Exploratory statistical analyses on this subgroup showed strong and significant correlations between physical quality of life at T0 and T1 (r = 0.761, p = 0.010) and between mental quality of life (SF-12 MCS) at T0 and T1 (r = 0.837, p = 0.003). Correlations between Wexner scores and mental quality of life were weak and not significant (T0: r = -0.322; T1: r = 0.303). The Italian version of the Cleveland Clinic Constipation Score demonstrated high reliability (Cronbach’s alpha = 0.91) and strong discriminative ability (AUC = 0.94). The study sample (N=102) had a mean age of 63 years (SD ±9.72) and was predominantly male (69%). A significant correlation was observed between constipation severity and reduced quality of life (p<0.01). Conclusion: This research highlights the critical need to integrate the Fundamentals of Care into nursing practice to enhance the quality of life for patients with neurodegenerative diseases. The validation of the Cleveland Clinic Constipation Score offers a reliable tool for monitoring non-motor symptoms. Patient experiences with TAI emphasize the importance of personalized interventions, although larger-scale studies are required. This thesis provides a significant contribution to the advancement of neuroscience nursing, outlining a path toward more informed, accountable, and patient-centered care.