Aims: The aims of this study were to: (i) test if there are clusters of stroke survivors who experience distinct trajectories of quality of life (QOL) from hospital rehabilitation discharge to 12-month follow-up; (ii) test if any sociodemographic or clinical variables predict this class membership; and (iii) examine the associations between the clusters of stroke survivors’ and their caregivers’ trajectories of anxiety, depression, and burden over time. Methods and results: A total of 415 stroke survivors and their caregivers were recruited in Italy for this 1-year, longitudinal, multicentre prospective study, filling out a survey at five time points. We found two distinct trajectories of change in stroke survivors’ psychological QOL (i.e. Memory, Communication, Emotion, and Participation). The first trajectory (86% of the survivors) included those who started with greater levels of QOL and improved slightly to markedly in all psychological domains, while the second trajectory (14% of the survivors) comprised those who started with lower overall levels of psychological QOL and experienced a worsening or no changes at all in these dimensions up to 12-month follow-up. Very few clinical and sociodemographic variables at baseline predicted class membership. Finally, caregivers of those patients who experienced no change or a worsening in psychological QOL reported greater distress and burden over time. Conclusion: Our results highlight the need for more tailored interventions to improve patients’ psychological QOL and consequently their caregivers’ well-being. This requires a shift from a stroke survivor–centred approach to a stroke survivor– and caregiver-centred one.
Background/Objectives: Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), significantly affects patients’ quality of life. Resilience and self-care are vital for disease management, yet their relationship with IBD remains underexplored. This study investigates how self-care behaviours influence resilience in patients with IBD, taking into account sociodemographic and clinical factors. Methods: This was a multicentre observational study. Data were collected during routine outpatient visits between April and June 2024. Participants (≥18 years) with an IBD diagnosis for at least 12 months were recruited. Data were collected using validated instruments, including the Connor-Davidson Resilience Scale (CD-RISC-25), the Self-Care of Chronic Illness Inventory (SC-CII), and sociodemographic and clinical questionnaires. Disease activity was assessed using the Mayo Score (UC) and the Harvey–Bradshaw Index (CD). Descriptive, correlational, and regression analyses explored variable relationships. This study was conducted as part of the N-ECCO Research Grant initiative. Results: A total of 401 participants (CD: 196, UC: 205) were enrolled, with equal gender distribution (50.1% male). The descriptive analysis of self-care levels showed a mean score of 72.6 (SD = 12.5) for self-care maintenance, 81.0 (SD = 18.2) for self-care monitoring, and 70.5 (SD = 18.4) for self-care management. The UC patients had higher self-care management scores than the CD patients (p = 0.002). The median resilience score was 45, and self-care management positively predicted resilience (β = 0.041, p < 0.001). Disease severity negatively affected resilience and self-care, particularly in severe cases (β = −8.334, p < 0.001). The females reported higher resilience and self-care monitoring scores than the men. Conclusions: Resilience and self-care are interrelated and crucial in IBD management. Enhancing resilience through personalised nursing interventions and integrating psychological and educational support may improve self-care and clinical outcomes.
7 June 2022 in European Journal of Cardiovascular Nursing
To examine the moderating role of caregiver preparedness on the association between stroke survivors’ depression and stroke-specific quality of life dimensions. We used a multilevel modelling approach to analyse trajectories of change in the eight Stroke Impact Scale 3.0 subscales [i.e. strength, communication, mobility, activities of daily living (ADL)/instrumental activities of daily living (IADL), memory, emotion, hand function, participation] using Hierarchical Linear Modeling. Caregiver preparedness significantly moderated the association between survivor depressive symptoms and survivor communication (B = −0.95, P < 0.01), mobility (B = −0.60, P < 0.05), and ADL/IADL (B = −0.73, P < 0.01) at baseline; linear change for strength (B = 0.83, P < 0.05) and communication (B = 0.66, P < 0.05); and quadratic change for strength (B = −0.19, P < 0.01). Although caregiver preparedness did not significantly moderate the association between survivor depressive symptoms and strength at baseline, there was a significant moderating effect for change over time. Higher levels of caregiver preparedness were significantly associated with higher survivor scores of emotion, hand function, and participation at baseline. Including immediate caregivers in the care process, through a psycho-educational training, would mean having better-prepared caregivers and consequently more-healthy stroke survivors. Given that preparedness includes coping with stress, responding and managing emergencies, assessing help and information may require tailored interventions aimed at improving the caregivers’ skills and knowledge about stroke survivors’ management.
Inflammatory bowel disease (IBD), encompassing Crohn’s disease (CD) and ulcerative colitis (UC), requires complex self-care behaviors to manage symptoms and maintain quality of life. Despite its importance, self-care in IBD remains poorly understood. This study aims to investigate self-care practices and the sociodemographic and clinical determinants of self-care among patients with IBD. A multicenter cross-sectional study was conducted in nine IBD units in Italy. Patients were enrolled between April and June 2024. Self-care was assessed using the Self-Care of Chronic Illness Inventory, covering self-care maintenance, self-care monitoring, and self-care management. Socio-demographic and clinical data were collected through structured questionnaires. Multiple linear regressions examined the relationships between patient characteristics and self-care dimensions. The N-ECCO Research Grant supported the study. Among 452 patients (49.3% CD, 50.7% UC), mean self-care scores were 72.84 ± 12.57 (self-care maintenance), 81.14 ± 17.94 (self-care monitoring), and 67.73 ± 16.99 (self-care management). Ulcerative colitis patients demonstrated significantly better self-care management than CD patients (P = .002). Higher disease activity was associated with worse self-care maintenance (β = –.11, P = .030), while supplement use predicted better self-care maintenance (β = .10, P = .028). For self-care monitoring, female gender (β = .11, P = .020) and supplement use (β = .13, P = .005) were positively associated with higher scores. Inflammatory bowel disease patients demonstrated adequate self-care maintenance and monitoring, but their self-care management was suboptimal. Female gender and supplement use were associated with better self-care monitoring; disease activity worsened self-care maintenance. Ulcerative colitis patients had better self-care management than CD, highlighting the need for tailored interventions to improve self-care.