Caregiver engagement profiles, perceived communication, and psychological distress during

Title: “Caregiver engagement profiles, perceived communication, and psychological distress during neurological Intensive Care Unit hospitalization: a longitudinal observational study” Authors: surname, name X; surname, name X; surname, name X; surname, name X Comment by Lorenzo Querci: Usa credit per i ruoli degli autori Affiliations: 1 Department of Mental Health and Addiction Services, Niguarda Hospital, Milan, Italy Corresponding Author: name, surname Phone: email: Introduction Admission to the Intensive Care Unit (ICU) is often sudden, unexpected, and potentially life-threatening, representing a highly stressful experience not only for patients but also for their family members (LaBuzetta et al., 2019). This impact is particularly pronounced in neurocritical care, where patients frequently present with impaired consciousness or decisional incapacity, making family caregivers central figures in communication, care processes, and clinical decision-making (Hwang et al., 2014; Jacobowski et al., 2010). Family members of critically ill patients frequently experience substantial psychological distress, including anxiety, depressive symptoms, and distress, which are commonly conceptualized within the framework of Post-Intensive Care Syndrome–Family (PICS-F) (Pochard et al., 2005; Davidson et al., 2012). In neurocritical care, prognostic uncertainty, sudden neurological deterioration, and the frequent inability of patients to express preferences may further increase the emotional and decisional burden placed on caregivers. For this reason, international guidelines emphasize the importance of family-centered care and effective communication strategies in critical care settings (Davidson et al., 2017; Kynoch et al., 2016). Within this context, caregiver engagement has emerged as a relevant framework for understanding the active role of family members during critical illness. Engagement refers to the caregiver’s psychological readiness, skills, and motivation to participate in the care process of a loved one (Barello et al., 2019). According to the Caregiving Health Engagement Model, engagement is a dynamic process characterized by different psychological positions, including Denial, Hyper-Activation, Drowning, and Balance (Barello et al., 2019). These positions reflect distinct emotional, cognitive, and relational configurations that may influence how caregivers understand clinical information, interact with healthcare professionals, and participate in decision-making. Although previous studies have extensively documented caregiver distress and satisfaction with ICU care, caregivers have often been conceptualized mainly as recipients of stress rather than as active participants in the care process. Moreover, most available studies adopt cross-sectional designs or focus on single outcomes, limiting the understanding of how distress, communication experience, and engagement evolve over time during ICU hospitalization (Goldfarb et al., 2020; Lincoln et al., 2020; Burns et al., 2018). This represents a particularly relevant gap in neurocritical care, where clinical trajectories are often uncertain and family involvement may change across the course of hospitalization. Understanding the longitudinal evolution of caregiver engagement, psychological distress, and satisfaction with communication may provide useful insights for tailoring communication strategies, supporting family-centered care, and identifying the timing and content of interventions for ICU professionals. The present study aimed to longitudinally describe caregiver psychological distress, engagement, and satisfaction with communication during neurocritical ICU hospitalization, and to explore associations among these dimensions across the early and overall course of ICU stay. Methods Setting The study was conducted in the Neurocritical Intensive Care Unit of ASST Grande Ospedale Metropolitano Niguarda, a large tertiary metropolitan hospital in Milan, Northern Italy, providing care for adult and pediatric patients with acute neurological conditions, including traumatic brain injury, neurological emergencies, and complex elective neurosurgical procedures. Many patients admitted to the unit present with impaired consciousness or decisional incapacity, making caregivers central interlocutors in communication and decision-making processes. Communication with family members is routinely organized through a structured daily meeting held every morning, seven days a week, in a dedicated private space and conducted by one of two reference physicians alternating in communication responsibilities. Additional informal communication may occur during visiting hours with physicians and nursing staff. Comment by Lorenzo Querci: Io lo toglierei perché non è propiamente legato al setting ed è già stato detto nell'introduzione. Design The study adopted a prospective longitudinal observational design. Caregivers were assessed at multiple predefined timepoints during the patient’s ICU stay, from admission until discharge or death. Assessment timepoints included: · T0: shortly after ICU admission, following the first structured physician–caregiver meeting; · T1: approximately within the firstone week after ICU admissionof hospitalization; · T2: approximately two weeks after ICU admissionadmission. Subsequent assessments were conducted at weekly intervals (T3, T4, T5) when eligibility criteria continued to be met. Repeated measures were used to evaluate caregiver psychological distress, satisfaction with communication, and engagement over time. The study was approved by the local Ethics Committee (approval number: 4986_17.07.2024_N), and all participants provided written informed consent. Participants Caregivers were recruited at the time of patient admission (T0). Eligibility criteria included being the primary caregiver of a patient who was unconscious and/or unable to make decisions at ICU admission, age ≥18 years, adequate knowledge of the Italian language, and absence of clinical or psychological conditions interfering with study participation. Primary caregiver was defined according to the American Psychological Association (2024) as the person primarily responsible for providing care and assistance to the patient. Caregivers enrolled at T0 remained eligible for follow-up assessments provided that they maintained continuity in their relationship with the patient and regular participation in communication with the reference physicians during the structured meetings (at least twice weekly). For each patient, all eligible family members or caregivers were invited to participate. Data collection Data collection was conducted within routine clinical practice from October 2024 to October 2025. Following the first structured meeting between the reference physician and caregiver(s), a trained researcher verified eligibility criteria, introduced the study, and obtained written informed consent. Caregivers completed self-report questionnaires at baseline and follow-up assessments. The researcher remained available for clarification or assistance if needed, without influencing responses. Follow-up assessments were conducted until patient discharge or death, provided inclusion criteria continued to be met. Measures Validated self-report instruments were used to assess caregiver psychological distress, satisfaction with communication, and engagement. Socio-demographic information was collected at baseline through an ad hoc questionnaire. Psychological distress Psychological distress was assessed using the Hospital Anxiety and Depression Scale (HADS; Zigmond & Snaith, 1983; Costantini et al., 1999), in line with recommendations for the assessment of Post-Intensive Care Syndrome–Family (PICS-F) (Nakanishi et al., 2023). The HADS consists of 14 items rated on a 4-point Likert scale and includes separate anxiety and depression subscales. Higher scores indicate greater psychological distress. Satisfaction with communication and decision-making Satisfaction with communication was assessed using selected domains of the Family Satisfaction with the ICU questionnaire (FS-ICU-24R; Danielis et al., 2023). In line with previous literature (Ferrando et al., 2019; Harrison et al., 2015), items 15–20 assessed satisfaction with information, whereas items 21–24 assessed satisfaction with involvement in decision-making. Scores were transformed to a 0–100 scale, with higher scores indicating greater satisfaction. Engagement Engagement was assessed using the Caregiving Health Engagement Scale (CHE; Barello et al., 2019), a validated self-report questionnaire grounded in the Caregiving Health Engagement Model. The CHE evaluates the caregiver’s psychological readiness to act as an active and motivated participant in the care process of a loved one. The scale includes seven items rated on an ordinal 7-point response scale. In line with the theoretical framework of the model, lower scores correspond to earlier engagement positions and higher scores to more advanced positions. For descriptive purposes, engagement positions were categorized as follows: scores 1–2 corresponded to Denial, 3–4 to Hyper-Activation, 5–6 to Drowning, and 7 to Balance. Engagement positions were interpreted as qualitative psychological configurations rather than as a normative progression toward psychological adjustment. Data analysis Descriptive statistics were computed to summarize caregivers’ sociodemographic characteristics and the distribution of study variables across assessment timepoints. Continuous variables were described using means and standard deviations or medians and interquartile ranges (IQR), as appropriate, while categorical variables were summarized using absolute frequencies and percentages. Longitudinal trajectories of psychological distress, satisfaction with information, satisfaction with involvement in the decision-making process, and caregiver engagement were examined descriptively across assessment timepoints. Given the variable duration of hospital stay, the longitudinal dataset was unbalanced, with a decreasing number of observations at later timepoints; therefore, analyses at later assessments were interpreted descriptively. Comment by Lorenzo Querci: Questo secondo me rientra nei limiti più che nei metodi Psychological distress (HADS anxiety and depression subscales) and satisfaction (FS-ICU-24R satisfaction with information and satisfaction with involvement in the decision-making process) were analyzed as continuous variables. Caregiver engagement, assessed using the Caregiver Health Engagement (CHE) scale, was analyzed using both the overall engagement score and the corresponding engagement positions (Denial, Hyper-Activation, Drowning, and Balance). Given the ordinal nature of the CHE items, descriptive analyses of engagement were based on medians and interquartile ranges, and associations involving engagement were examined using non-parametric statistics. Associations between caregiver psychological distress, satisfaction with information, satisfaction with involvement in the decision-making process, and caregiver engagement were examined using Spearman’s rank correlation coefficients. Correlations were computed using caregiver-level aggregate scores across all available assessments to describe overall associations. To provide a focused description of associations during the early ICU phase, when sample size was highest, correlations were also computed separately at baseline (T0) and early follow-up (T1). Statistical significance was set at p< .05 (two-tailed). All analyses were conducted using jamovi software version 2.6. Comment by Lorenzo Querci: La principale fragilità metodologica del lavoro riguarda il modo in cui viene gestita la natura longitudinale del dataset. Nella parte descrittiva il manoscritto presenta correttamente i dati come longitudinali, descrivendo le traiettorie di distress, engagement e soddisfazione nei diversi timepoint. Tuttavia, quando si passa alle analisi di associazione, la struttura longitudinale viene sostanzialmente persa.L’utilizzo di modelli longitudinali dedicati (ad esempio mixed-effects models con effetti casuali per caregiver e paziente) avrebbe consentito di preservare la struttura gerarchica dei dati, gestire correttamente le osservazioni ripetute e valutare in modo più rigoroso l’evoluzione delle relazioni tra engagement, distress e soddisfazione nel tempo. Results Description of the sample The sample included 168 caregivers of 79 patients admitted to the Neurocritical ICU. Overall, multiple caregivers referred to the same patient, resulting in a mean of 2.1 caregivers per patient. Specifically, 27 patients (34.2%) were supported by one caregiver, 27 (34.2%) by two caregivers, and 25 (31.6%) by three or more caregivers. A total of 370 observations were collected across the six longitudinal assessment timepoints (Table 1). As expected in ICU longitudinal research, the dataset was unbalanced, with progressively fewer observations at later assessments due to variable duration of hospitalization and changes in caregiver presence over time. Consequently, findings from later assessment phases should be interpreted cautiously. Table 1. Number and proportion of caregiver observations across longitudinal assessment timepoints. Percentages refer to the proportion of total observations across all assessment timepoints The mean caregiver age was 48.94 years (SD = 14.94; range 18–79 years). Socio-demographic characteristics are summarized in Table 2. The sample included a slightly higher proportion of males (53%) than females (47%). Adult children represented the largest caregiver group (26.2%), followed by parents (20.2%), siblings (19.6%), and spouses/partners (17.9%). Most caregivers reported upper secondary education (53.6%) and were employed (65.5%). The majority of participants were of Italian nationality (96.4%) and identified as Christian (82.8%). Comment by Lorenzo Querci: Distribuzione normale? Comment by Lorenzo Querci: Io descriverei la proporzione senza aggiungere giudizio su più o meno Table 2 - Socio-demographic characteristics of caregivers at baseline - Percentages are calculated on non-missing data; *caregivers with dual nationality (e.g., Italian-Egyptian, Italian–Venezuelan, Italian-Libyan) were included in the “Italian” category. Longitudinal trajectories of caregiver psychological distress Descriptive statistics for caregiver psychological distress are reported in Table 3, while longitudinal trajectories are illustrated in Figures 1 and 2. Across assessment timepoints, caregivers reported persistently elevated levels of anxiety and depressive symptoms, with relatively stable trajectories over time. Mean anxiety scores remained consistently around the borderline-to-clinical range across assessments, whereas depressive symptoms also showed stable values throughout the observation period. Variability at later timepoints should be interpreted cautiously because of the reduced number of observations. Table 3. Descriptive statistics of caregiver psychological distress, across assessment timepoints. - Standard deviations are not reported when only one observation was available. Figure 1. Psychological distress – anxiety dimension across assessment timepoints. Points represent mean scores and error bars indicate standard deviations. Figure 2. Psychological distress – depression dimension across assessment timepoints. Points represent mean scores and error bars indicate standard deviations. Longitudinal trajectories of caregiver satisfaction with information, and satisfaction with involvement in the decision-making process Descriptive statistics for caregiver satisfaction with information and involvement in decision-making are presented in Table 4, with longitudinal trajectories illustrated in Figures 3 and 4. Satisfaction with information remained high and relatively stable across assessment timepoints. By contrast, satisfaction with involvement in the decision-making process showed lower scores at baseline, followed by a progressive increase during the early hospitalization phase and subsequent stabilization over time. Overall, caregivers reported consistently higher satisfaction with information provision than with involvement in decision-making throughout the ICU trajectory. Table 4. Descriptive statistics of caregiver satisfaction with information and satisfaction with involvement in the decision-making process across assessment timepoints. - Standard deviations are not reported when only one observation was available. Figure 3. Satisfaction with information across assessment timepoints. Points represent mean scores and error bars indicate standard deviations. Figure 4. Satisfaction with involvement in the decision-making process across assessment timepoints. Points represent mean scores and error bars indicate standard deviations. Longitudinal trajectories of engagement Descriptive statistics for caregiver engagement are reported in Table 5, while longitudinal distributions are illustrated in Figure 5. At baseline, the median caregiver engagement score corresponded to the Hyper-Activation position. Engagement remained predominantly within the Hyper-Activation range across early assessments, with only partial shifts toward Drowning at later timepoints. Overall, engagement trajectories were characterized by relatively stable activation-oriented profiles across the ICU stay. Table 5. Descriptive statistics of caregiver engagement across assessment timepoints. Figure 5. Boxplots showing the distribution of caregiver engagement across assessment timepoints. Boxes represent the interquartile range (IQR), with the horizontal line indicating the median; whiskers indicate the range of the data. Transitions between caregiver engagement positions Absolute frequencies and percentages of caregiver engagement positions across assessment timepoints are reported in Table 6, while longitudinal transitions are illustrated in Figure 6. At baseline, Hyper-Activation represented the most frequent engagement position, followed by Drowning and Denial, whereas Balance was rarely observed. Across subsequent assessments, Denial progressively decreased, while Hyper-Activation and Drowning remained the predominant profiles over time. As illustrated in Figure 6, transitions mainly occurred between adjacent engagement positions, particularly between Hyper-Activation and Drowning, whereas transitions toward Balance remained infrequent across assessment phases. Table 6. Absolute and relative distribution of caregiver engagement positions across assessment timepoints. Figure 6. Alluvial plot of transitions between caregiver engagement positions across assessment timepoints (relative frequencies). Overall and early-phase associations between caregiver psychological distress, satisfaction with information, satisfaction with involvement in the decision-making process, and engagement Overall correlations between caregiver psychological distress, satisfaction with information, satisfaction with involvement in decision-making, and engagement are reported in Table 7. At the aggregate level, caregiver engagement showed a positive association correlation with anxiety symptoms and with both satisfaction dimensions, whereas depressive symptoms were negatively associated correlated with engagement and with satisfaction measures. Satisfaction with information and satisfaction with involvement in decision-making were also positively correlated with each other. Comment by Lorenzo Querci: Parlerei di correlazione e non associazine (almeno a me richiama una causabilità) To provide a focused description of the early ICU phase, when sample size was highest, correlations were additionally examined separately at T0 and T1 (Tables 8 and 9). Across both assessments, the overall correlational pattern remained substantially consistent: engagement was positively associated with anxiety and satisfaction dimensions, whereas depressive symptoms showed negative associations with engagement and with satisfaction regarding involvement in decision-making. Satisfaction with information and satisfaction with involvement in decision-making remained strongly and positively associated across both early assessments. Comment by Lorenzo Querci: Questa o quella su tutti i timepoint deve andare in appendice. Alcune immagini tipo HADS nei timepoint sono da mettere isnieme. Bisogna ridurrei l numero di tabelle ed immagini dell'articolo lasciando in appendice ciò che non è fondamentale per aumentare la leggibilità. Table 7. Spearman correlations between aggregate caregiver psychological distress, satisfaction with information, satisfaction with involvement in the decision-making process, and engagement (caregiver-level scores) - Spearman’s rho coefficients are reported. *p < .05, ** p < .01, *** p < .001. Table 8. Spearman correlations between psychological distress, satisfaction with information, satisfaction with involvement in the decision-making process, and engagement at T0 - Spearman’s rho coefficients are reported. *p < .05, ** p < .01, *** p < .001. Table 9. Spearman correlations between psychological distress, satisfaction with information, satisfaction with involvement in the decision-making process, and caregiver engagement at T1 - Spearman’s rho coefficients are reported. *p < .05, ** p < .01, *** p < .001. Discussion The present study provides a descriptive longitudinal overview of caregiver psychological distress, satisfaction with communication, and engagement during Neurocritical ICU hospitalization. The present study provides a longitudinal and process-oriented description of caregiver psychological distress, satisfaction with communication, and engagement trajectories during hospitalization in a Neurocritical ICU. Overall, caregivers reported persistently elevated psychological distress throughout the ICU stay, alongside relatively high satisfaction with communication and predominantly activation-oriented engagement profiles. In the available descriptive data, caregiver engagement appeared to remain predominantly within activation-oriented positions, although the marked reduction in observations at later timepoints limits conclusions about longitudinal progression.Caregiver engagement remained predominantly within activation-oriented positions across assessment phases, without clear evidence of progression toward more balanced engagement configurations. Psychological distress trajectories Caregivers reported persistently elevated levels of anxiety and depressive symptoms across assessment timepoints, with mean HADS scores remaining within the borderline-to-clinical range already from the early phase of hospitalization. These findings are consistent with literature on Post-Intensive Care Syndrome–Family (PICS-F), which identifies psychological distress as a common and enduring response among family members of critically ill patients (Pochard et al., 2005; Davidson et al., 2012; Nakanishi et al., 2023). In neurocritical care settings, where prognostic uncertainty and risk of severe disability or mortality are particularly salient, sustained emotional distress may represent an expected and contextually understandable response rather than a transient reaction to ICU admission alone. Importantly, distress trajectories remained relatively stable over time, suggesting that prolonged exposure to uncertainty and ongoing clinical instability may contribute to maintaining elevated emotional burden throughout hospitalization. Satisfaction with communication and involvement in decision-making Caregivers consistently reported higher satisfaction with information provision than with involvement in decision-making. Satisfaction with information remained high and stable across timepoints, whereas satisfaction with involvement in decision-making showed lower initial scores followed by a progressive increase during the early hospitalization phase. This pattern suggests that informational needs may be addressed relatively early through structured communication routines, while perceived involvement in decision-making may require progressive relational alignment, clarification of roles, and increasing familiarity with the clinical situation. The relatively high FS-ICU scores observed in this study likely reflect the structured and regular communication practices implemented within the unit, including daily physician-led meetings with caregivers (Jacobowski et al., 2010; Hwang et al., 2014). At the same time, high satisfaction with communication did not correspond to reduced psychological distress. This finding is coherent with previous ICU literature showing that effective communication and family involvement improve caregivers’ experience and perceived quality of care without necessarily reducing anxiety or depressive symptoms (Kentish-Barnes et al., 2015; White et al., 2018). Communication may therefore support orientation, understanding, and participation without fully mitigating the emotional burden associated with critical illness. The coexistence of high communication satisfaction and elevated distress suggests that these dimensions may capture different aspects of the caregiver experience. Engagement trajectories Caregiver engagement was predominantly characterized by Hyper-Activation during the early phase of ICU hospitalization. Across subsequent assessments, engagement profiles remained largely concentrated between Hyper-Activation and Drowning, whereas Balance was infrequently observed. Within the Caregiving Health Engagement Model, these profiles should not be interpreted normatively as adaptive or maladaptive stages (Barello et al., 2019). Rather, they represent different ways of remaining psychologically connected to the caregiving situation. Hyper-Activation reflects heightened vigilance, urgency, and motivational readiness, whereas Drowning reflects increasing emotional overload occurring alongside continued involvement in care. In the context of Neurocritical ICUs, where uncertainty, clinical instability, and mortality risk are intrinsic aspects of care, these engagement configurations may represent realistic and context-sensitive responses rather than dysfunctional patterns. From this perspective, expecting caregivers to achieve emotional balance during ICU hospitalization may be clinically unrealistic. Associations between engagement, distress, and satisfaction The correlational findings further support a process-oriented conceptualization of caregiver engagement. Engagement was positively associated with anxiety symptoms and with satisfaction regarding both information provision and involvement in decision-making, while depressive symptoms showed negative associations with engagement and satisfaction dimensions. These findings suggest that engagement and emotional well-being should not be considered overlapping constructs. Anxiety, although emotionally burdensome, may partially function as an activating state that sustains vigilance, information-seeking, and participation in care processes, whereas depressive symptoms may contribute to withdrawal and reduced involvement. At the same time, higher engagement was associated with greater satisfaction with communication and involvement in decision-making, supporting the idea that caregivers who remain psychologically activated and involved may also perceive communication processes more positively. This interpretation is consistent with literature emphasizing the relational and participatory dimensions of clinician–family communication in intensive care settings (Lincoln et al., 2023; Seaman et al., 2017). Organizational role of communication An additional interpretative perspective concerns the organizational role of communication within the ICU context. In the present study setting, communication with caregivers was organized as a regular, daily, and predictable encounter. In highly uncertain clinical environments, these structured communication practices may function as stable relational reference points for caregivers. Rather than primarily reducing emotional distress, daily communication may support caregivers’ sense-making processes, orientation within the care trajectory, and perception of legitimacy within the clinical context (Lautrette et al., 2007; Davidson et al., 2017). In this sense, communication may serve not only an informational function, but also an organizational and relational stabilizing role during prolonged exposure to uncertainty. Limitations and methodological considerations The longitudinal design was characterized by a marked reduction in observations beyond the early hospitalization phase. This pattern reflects the organizational and relational dynamics frequently observed in ICU settings, where caregiver presence progressively changes over time due to alternation among family members, reduced bedside presence, or changes in clinical trajectories (Watland et al., 2023). Consequently, later assessments likely represent a more selected subgroup of caregivers exposed to prolonged and complex ICU trajectories. The extremely limited number of observations beyond T1 substantially restricts the interpretation of later trajectories, which should be considered exploratory and descriptive rather than representative of longitudinal change. In addition, the observational nature of the study does not allow causal inferences regarding relationships between engagement, distress, and satisfaction with communication. All measures were self-reported and may therefore be influenced by reporting bias and caregivers’ emotional states at the time of assessment. Finally, the study was conducted within a single Neurocritical ICU characterized by structured communication practices, which may limit the generalizability of findings to settings with different organizational models. A key methodological limitation concerns the handling of the longitudinal structure in the association analyses. Although the study collected repeated observations over time, correlational analyses were conducted using caregiver-level aggregated scores across available assessments. This approach reduces the temporal granularity of the data and does not explicitly model the non-independence of repeated observations within the same caregiver or the clustering of caregivers within the same patient. Therefore, the observed correlations should be interpreted as overall caregiver-level associations rather than evidence of within-caregiver longitudinal processes or temporal change. Clinical implications The present findings suggest several implications for family-centered care in Neurocritical ICUs. First, caregiver engagement should be conceptualized as a dynamic psychological positioning rather than as an indicator of emotional adjustment or resilience. Hyper-Activation and Drowning may coexist with substantial emotional burden while still reflecting meaningful involvement in care processes. Second, the dissociation between relatively high satisfaction with communication and persistently elevated psychological distress suggests that communication alone may not be sufficient to reduce caregivers’ emotional suffering. Alongside communication strategies, systematic psychological assessment and supportive interventions may therefore be relevant, particularly during the early ICU phase. Third, structured and predictable communication routines may play an important organizational and relational role by supporting caregivers’ orientation and continuity within highly unstable clinical trajectories. Finally, tailoring communication strategies to caregivers’ engagement profiles may represent a promising direction for future ICU practice. Recognizing whether caregivers are predominantly hyper-activated or emotionally overwhelmed may help clinicians modulate timing, framing, and content of communication according to caregivers’ psychological positioning. Conclusions This longitudinal observational study provides a process-oriented description of caregiver psychological distress, communication satisfaction, and engagement during Neurocritical ICU hospitalization. Caregivers reported persistently elevated psychological distress despite relatively high satisfaction with communication and involvement in decision-making. Engagement emerged as a dynamic and context-sensitive psychological positioning rather than a marker of emotional well-being. Hyper-Activation and Drowning represented the predominant engagement configurations throughout hospitalization, suggesting that sustained vigilance, involvement, and emotional burden may coexist during prolonged exposure to critical illness. 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