Silvia Rossi Ferrario

The approach to patients affected by motor neuron disease (MND) and their caregivers requires specific training for the care-team. In fact, the progression of the disease, with the decline of physical - and sometimes cognitive - function, the increasing difficulties in speaking, breathing, and swallowing and the need of invasive choices, as the artificial nutrition and tracheostomy, constitute a challenge for the health professionals, often generating distress. For this reason, their cohesion and sharing abilities are fundamental. Psychologist assumes a strategic role in supporting and facilitating the analysis of clinical cases and of the team's intra/interpersonal dynamics. For this aim, he/she needs specific training and instruments. We here present a semi-structured interview - the Motor Neuron Disease-Psychological Interview (MoNeDi-Pl)which may guide in the psychological assessment of patients affected by MNDs and their caregivers. It can also be a handy reference tool for other members of the healthcare team providing necessary information about the patient and caregiver in order to optimize clinical decision making about which health interventions to apply.

Objectives. Patients implanted with a Left Ventricular Assist Device (LVAD) constitute a new population of chronic heart failure (HF) patients requiring continuous medical support and representing heavy costs - both direct and indirect - for the healthcare system. If there is consensus about the increased survival, the psychosocial outcomes, in terms of psychological wellbeing, behavioral and social functioning of both patients and caregivers, are still unclear. Overall, it is not clear if local health and social services are equipped to support them in their needs. We conducted an observational study on the psychosocial characteristics and needs of LVAD patients. Methods: Twenty-seven patients admitted for rehabilitation after implantation, and their caregivers were recruited. On admission, patients and caregivers were administered questionnaires assessing anxiety, depression, quality of life, level of social complexity and were interviewed about their social resources. At discharge, patients were re-assessed by questionnaires and patients/caregivers received a follow-up phone-interview after 8-12 months. Results. LVAD patients' emotional well-being and subjective quality of life improved during the rehabilitation stay and they confirmed their satisfaction with LVAD at follow-up. Problems emerged concerning the inadequate health and social assistance that LVAD patients receive once home. More than 50% of patients showed substantial social complexity, the burden of which fell on the caregivers, whose strain hardly declined over time, remaining at a level requiring psychological attention. Conclusions. Technological advances that improve LVAD patients' survival should be rapidly followed by adequate interventions by policy makers to improve also the local health/social assistance provided and to address patients and caregivers psychosocial needs over time.

Background: After the rehabilitation program, patients with left ventricular assist device (LVAD) are discharged home, but the adaption to the daily life with the implant is challenging, both with practical and psychological consequences. Literature is lacking detailed information about the quality of life of LVAD patients and caregivers after discharge to home.Objective: This study aimed at evaluating the post‐discharge outcomes of both LVAD patients and their caregivers in terms of quality of life, affectivity, and psychological health.Methods: In this observational follow‐up study, LVAD dyads discharged home from 1 year to 6 years were re‐contacted by phone and received by mail an envelope with self‐report questionnaires. Responses of 39 complete dyads of patients (mean age 68.59 ± 4.31; males: 92.31%) and their caregivers (mean age 61.59 ± 11.64; males: 17.95%) were analyzed.Results: Patients and caregivers reported the moderate levels of anxiety, depression, and caregiver strain, and Illness denial and conscious avoidance were associated between them. The couples often reported that the LVAD has impairments for their sleep and for their affective–sexual relationship. Caregivers often reported impairment in social life and self‐care.Discussions: Despite the satisfaction for the medical and territorial assistance, patients showed psychological difficulties such as anxious and depressive symptoms and caregivers tend to neglect themselves. Even after a long time from discharge to home, the psychological distress of LVAD patients and caregivers is still considerable. Structured and continuous psychological interventions are required to support their psychological health overtime after the discharge to home.

Purpose: COVID-19 patients faced first-hand the life-threatening consequences of the disease, oftentimes involving prolonged hospitalization in isolation from family and friends. This study aimed at describing the psychological intervention to address the psychological difficulties and issues encountered by the hospitalized post-acute COVID-19 patients in a rehabilitation setting. Patients and Methods: Patients’ demographics, medical diagnosis, and neuro-psychological information were collected from March 2^nd to May 12^th, 2020. The main psychological issues and intervention strategies were collected. Results: A total of 181 patients were hospitalized during this period. Among them, the 47.5% underwent psychological assessment (N=86; age: 74.58± 13.39; 54.7% females). The most common psychological issues were acute stress disorders (18.6%), anxious and demoralization symptoms (26.7%), depression (10.5%%), and troublesome grief (8.1%). Once recovered from COVID-19, many patients were discharged home (38.4%), some received further rehabilitation in non-COVID-19 wards (41.9%), mostly due to pre-existent diseases (72.2%) rather than to COVID-19 complications (27.8%). Conclusion: A great number of the hospitalized post-acute COVID-19 patients showed psychological issues requiring psychological intervention, the most common were anxiety, demoralization, acute stress, depression, and grief. The proposed psychological treatment for hospitalized COVID-19 patients was conducted in a Cognitive Behavioral framework. In particular, during the COVID-19 pandemic, psychological intervention is an important part of rehabilitation in the post-acute phase of the illness to reduce distress symptoms and improve psychological health.

Implantable left ventricular assist devices (LVADs) are increasingly used for patients with heart failure. Despite this evidence, the psychological processes affecting implanted patients and their caregivers are only marginally studied. While common emotional reactions, such as anxiety and depression already receive attention, very little is known about the course of caregiver strain, illness denial, and their reciprocal relation. This preliminary study aims at exploring these critical topics in a cardiac rehabilitation setting, besides offering indications for future research. A total of 44 LVAD patients and caregivers were administered specific questionnaires at admission and discharge from cardiac rehabilitation. Overall, questionnaires completed at discharge showed a positive improvement in the emotional measures used. However, they also showed a worsening in the illness denial measure. We suggest that the denial process may prepare patients and caregivers in returning home. Moreover, we conclude that studying only the common emotional reactions may limit the understanding of the psychological process adaptation to severe illness.

Background: The increasing number of stroke patients (SPs) requires informal caregivers to bear a high burden of responsibilities and heavy (di)stress. Moreover, these issues could lead to the development of serious psychological problems (e.g., depressive and/or anxious) that in turn could give rise to poor health-related quality of life outcomes. However, although the value of psychological interventions has been widely recognized for SPs, the scientific literature lacks an updated synthesis of interventions addressing the psychological health of their caregivers. Aim: The aim of this review is to summarize the interventions for the psychological health of stroke caregivers and provide a resume of literature-based evidence of their efficacy. Method: A literature review from 2005 to date was conducted in three online databases: PubMed, Scopus, and Google Scholar. Eligibility criteria for studies were (A) English language, (B) caregivers and patients aged 18 years or above, (C) SP's caregiver beneficiating of a specific intervention, and (D) outcome measures addressing depressive and/or anxiety symptomology, quality of life, well-being, or burden. Results: Across the selected 45 studies, substantial differences are observable in three main categories: (a) type of intervention (b) techniques, and (c) operators. Interventions' advantages and results are discussed. Overall, studies using psychological techniques, such as cognitive-behavioral therapy, coping skill-training, and problem-solving therapy, showed their usefulness and efficacy in reducing the caregivers' depressive and anxious symptoms, and burden. Interventions led by psychologists and tailored to meet caregivers' specific needs showed more positive outcomes. Conclusion: This review underlines the usefulness of psychological interventions aimed at reducing the psychological burden, such as anxious and depressive symptomatology, of SPs' informal caregivers. Hence, psychological interventions for caregivers should be integrated as part of the stroke rehabilitation process to improve informal caregivers' and patients' quality of life and well-being.

Background: Coping with chronic illness can be overwhelming for patients and caregivers, and may be inhibited by the denial mechanism, and therefore, denial represents a critical issue for health professionals. Assessing illness denial is far from easy, and brief tools suitable for medical settings are lacking. In this paper, the development of a short form of the Illness Denial Questionnaire (IDQ) for patients and caregivers is presented. Methods: In study 1, the IDQ was administered to 118 patients and 83 caregivers to examine the internal structure of denial; then the properties of the items (DIF, fit, and difficulty) were evaluated according to the Rasch model in order to select the best items for the Illness Denial Questionnaire-Short Form (IDQ-SF). Study 2 included 202 participants (113 patients and 89 caregivers). The internal structure of the IDQ-SF was tested via confirmatory factor analysis (CFA). Reliability and concurrent validity were also studied using the Anxiety and Depression Questionnaire-Reduced Form (AD-R). Results: The CFA showed a two-factor structure encompassing “Denial of negative emotions” and “Resistance to change”. Results of the Rasch analyses led to the selection of 4 items for each dimension. The resulting IDQ-SF (8 items) showed a two-factor structure as well as good reliability and concurrent validity with AD-R. Conclusion: The IDQ-SF represents a valid tool for quickly evaluating the core of illness denial in patients and caregivers. This brief and easily administrable questionnaire allows health professionals to outline the presence and severity of illness denial in order to set individually tailored interventions.

Few studies evaluated the effect of cardiac rehabilitation (CR) programs on perceived emotional and health‐status of LVAD patients, and none explored their effect on caregivers’ strain. We enrolled one hundred nineteen adult LVAD patients, together with their caregivers (n. 91), in two Rehabilitation Institutes that provided inpatient multidisciplinary activities. At admittance and prior to discharge they completed questionnaires evaluating patient emotional state and subjective perception of health status, caregiver strain, and patient and caregiver perception of LVAD. Six months after discharge, patients and caregivers were contacted again and asked specific questions about their quality of life. Patients’ state anxiety and depression symptoms significantly diminished at discharge (.000), whereas their perception of general health status rose (.000). Caregivers’ perceived strain also significantly decreased (.001) and the perceived device management skill grew both for patients and caregivers (.000). A substantial quote (36%) of psychologically frail patients and caregivers, although improving their emotional condition, never reached that of the less frail subjects. At the 6 months follow‐up, both patients and caregivers appeared stable in evaluating respectively their general health and their caregiving‐related strain, compared to discharge. Our data show that a comprehensive inpatient rehabilitation program improves the emotional state of LVAD patients and of their caregivers, even in psychologically frailer subjects. Team approach makes patients and caregivers self‐confident about device management, increasing their knowledge, clarifying their doubts, and encouraging them to handle the difficulties met during the rehabilitation period, suggesting strategies to cope with daily‐life at home.

Purpose: Interest in assessing denial is still present, despite the criticisms concerning its definition and measurement. We tried to develop a questionnaire (Illness Denial Questionnaire, IDQ) assessing patients’ and caregivers’ denial in relation to their illness/disturbance. Patients and methods: After a preliminary study, a final version of 24 dichotomous items (true/false) was selected. We hypothesized a theoretical model with three dimensions: denial of negative emotions, resistance to change, and conscious avoidance, the first two composing the actual Denial and the last representing an independent component of the illness denial behavior. The IDQ was administered to 400 subjects (219 patients and 181 caregivers) together with the Anxiety–Depression Questionnaire – Reduced form (AD-R), in order to assess concurrent validity. Confirmatory factor analysis (CFA), internal consistency indices (Cronbach’s α and McDonald’s ω), and test–retest analysis were performed. Results: CFA and internal consistency indices (Cronbach’s α: 0.87–0.96) indicated a clear and meaningful three-factor structure of IDQ, for both patients and caregivers. Further analyses showed good concurrent validity, with Denial and its subscale negatively associated with anxiety and depression and avoidance positively associated with anxiety and depression. The IDQ also showed a good stability (r from 0.71 to 0.87). Conclusion: The IDQ demonstrated good psychometric properties. Denial of negative emotions and resistance to change seem to contribute to a real expression of denial, and conscious avoidance seems to constitute a further step in the process of cognitive–affective elaboration of the illness.

Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning.