Caregivers' burden and deep brain stimulation for Parkinson disease: A systematic review of qualitative studies.

BACKGROUND AND PURPOSE: The impact of subthalamic nucleus deep brain stimulation (STN-DBS) on caregivers' burden is understudied. We perform a systematic review and meta-synthesis aggregating qualitative studies involving partners of people with Parkinson disease (PwP) to explore their experiences and unmet needs. METHODS: A systematic review for retrieving qualitative studies included six databases: MEDLINE, Embase, CINAHL, Cochrane, PsycInfo, and Scopus. Inclusion criteria were as follows: (i) studies on the experience of caregivers of PwP in the context of STN-DBS, (ii) English peer-reviewed articles, and (iii) qualitative or mixed methods studies reporting caregivers' quotations. After the appraisal of included studies, we performed meta-synthesis of qualitative findings. Descriptive themes and conceptual elements related to PwP partners' experiences and unmet needs were generated. RESULTS: A total of 1108 articles were screened, and nine articles were included. Three categories were identified: (i) dealing with Parkinson disease (PD) every day (the starting situation characterized by the impact of PD on ordinary life; the limitations to partners' socialization; partners' efforts in stepping aside for love and care activities), (ii) facing life changes with STN-DBS (the feeling of being unprepared for changes; the fear and concern due to loved ones' behavioral changes; struggling to find an explanation for those changes), and (iii) rebuilding the role of caregiver and partner after STN-DBS. CONCLUSIONS: This meta-synthesis elucidates concerns, challenges, and unmet needs of partners of PwP who underwent STN-DBS. It is important to provide them with information, education, and adequate support to face these challenges. Professionals need to involve partners in the care and decision process, because STN-DBS-related outcomes do not depend solely on the well-being of PwP but also on the well-being of individuals surrounding them.

Determinants of survival in patients with chronic heart failure: a population-based study in Reggio Emilia, Italy.

AIMS: We aim to monitor and improve the quality of the heart failure (HF) integrated assistance model defined by national and regional guidelines and implemented in the province of Reggio Emilia, Italy. Specific aims of the audit were to estimate the prevalence of HF, describe the characteristics of patients with HF and the rate of patients enrolled in the integrated care treated in primary care, and identify socioeconomic and geographic determinants of the 4-year survival of these patients. METHODS AND RESULTS: Retrospective analysis of a cohort of prevalent cases of HF, diagnosed before 31 December 2015 in Reggio Emilia, Italy, alive on 1 January 2016, and residing at the time of diagnosis on the provincial territory. Age and sex-adjusted prevalence of HF by area of residence were calculated according to the standard European population 2013. Patients were followed until death or 31 December 2019, whatever came first. The outcome measure of the study was four-year case fatality. Cox proportional hazards models, adjusted for age, sex, and duration of disease were used to determine the association between socio-geographic factors and death. The 4-year case-fatality rate was 36.7%, and it was the highest in the mountains (50.8%) compared with hills (34.6%), lowland (35.4%) and city (37.7%). The prevalence of HF was the lowest in the mountain [149.9, 95% confidence interval (CI) 112.1-187.7] and the highest in the lowland (340.8, 95% CI 308.7-372.9) and city (308, 95% CI 276.0-321.2). Patients living in the mountains had a lower deprivation index, and fewer hospitalizations prior to official diagnosis, although these characteristics were not statistically significant determinants of HF death in multivariate analysis. Behavioural (smoking and obesity) and socio-geographic characteristics (educational level, deprivation index and area of residence) were not significantly associated with mortality in both univariable and multivariable analysis; however, patients who live in mountains (hazard ratio 1.10, 95% CI 0.73-1.66) or hills (hazard ratio 1.11, 95% CI 0.90-1.37) had a slightly higher risk of death than those living in the city. Only 197 (12.1%) of patients in the cohort were enrolled in the integrated care pathway over the course of 4 years. CONCLUSIONS: Although clinical determinants outweigh the geographic and behavioural disparities in the survival of patients with CHF treated in primary care, effective prevention strategies are needed to address environmental and socio-geographic inequalities in access to primary care and to hasten equitable linkage to integrated care.

Surviving cancer following total laryngectomy: a phenomenological study.

PURPOSE: Total laryngectomy followed by radiotherapy is a life-preserving treatment for patients with locally advanced laryngeal cancer. This study explored how persons who had undergone total laryngectomy perceived themselves as cancer survivors in the follow-up phase. METHODS: A descriptive phenomenological approach was adopted. We employed a purposive sampling strategy to collect data through interviews at the otorhinolaryngology outpatient clinics of two research hospitals in northern Italy. The interviews were transcribed verbatim and analysed, following the seven analytical steps of Colaizzi's descriptive analysis. RESULTS: The final sample included 19 patients. The following main themes were identified: (i) accepting a life with the "without" to survive; (ii) feeling unpleasant emotions; (iii) getting the hang of communication again; and (iv) reclaiming one's role. Together, they highlight the lived experiences of laryngectomised patients during the follow-up phase and how they perceived themselves as cancer survivors. CONCLUSION: Laryngectomised patients are a uniquely vulnerable population. This study provides insights into how surgical procedures change and affect their lives over time to improve care models, patient education, and support systems. Survivors must be adequately prepared to transition from treatment and return to the community. This preparation should begin before treatment is started. Functional education, accurate information, and psychological support must be arranged and provided before surgery. Regarding the post-treatment phase, it is essential to support voice rehabilitation and peer support, and improve the family network, to ensure these patients' reintegration into society and social recognition.

Elements Characterising Multicomponent Interventions Used to Improve Disease Management Models and Clinical Pathways in Acute and Chronic Heart Failure: A Scoping Review.

This study aimed to summarise different interventions used to improve clinical models and pathways in the management of chronic and acute heart failure (HF). A scoping review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement. MEDLINE (via PubMed), Embase, The Cochrane Library, and CINAHL were searched for systematic reviews (SR) published in the period from 2014 to 2019 in the English language. Primary articles cited in SR that fulfil inclusion and exclusion criteria were extracted and examined using narrative synthesis. Interventions were classified based on five chosen elements of the Chronic Care Model (CCM) framework (self-management support, decision support, community resources and policies, delivery system, and clinical information system). Out of 155 SRs retrieved, 7 were considered for the extraction of 166 primary articles. The prevailing setting was the patient's home. Only 46 studies specified the severity of HF by reporting the level of left ventricular ejection fraction (LVEF) impairment in a heterogeneous manner. However, most studies targeted the populations with LVEF ≤ 45% and LVEF < 40%. Self-management and delivery systems were the most evaluated CCM elements. Interventions related to community resources and policy and advising/reminding systems for providers were rarely evaluated. No studies addressed the implementation of a disease registry. A multidisciplinary team was available with similarly low frequency in each setting. Although HF care should be a multi-component model, most studies did not analyse the role of some important components, such as the decision support tools to disseminate guidelines and program planning that includes measurable targets.

'Now I can train myself to be with death': a phenomenological study with young doctors in care homes supported by a palliative care unit during the second wave of the pandemic in Italy.

OBJECTIVE: During the second wave of the COVID-19 pandemic, one of the organisational strategies established by the Italian National Health System was the special units for continuity of care (SUCCs). In the province of Ravenna, those units enrolled novice doctors to care for elderly patients with COVID-19 in care homes (CHs). The local palliative care (PC) unit decided to offer consultations and support to them. This study aimed to comprehend the experience of young doctors who asked for consultations when facing, during their first early years of practice, complex situations. DESIGN: We conducted a qualitative study employing a phenomenological approach and in-depth interviews. PARTICIPANTS: We involved 10 young doctors who worked in Italian SUCC during the pandemic and used a PC consultation support service. RESULTS: What describes our participants' experience is related to four main themes: (1) reducing distances, (2) perceiving medical futility and improvising, (3) being supported to learn how to be with death and (4) narrowed timing to humanise care. The pandemic was, for our participants, a moment of reflection and critique on the skills acquired during the university course. It was a strong experience of human and professional growth that helped them reshape and deepen their role and skills, incorporating the approach of PC into their professional identity. CONCLUSIONS: Integration between specialists and young doctors with an early entry into the workforce during the pandemic in CHs set out a 'shift' to a proactive and creative approach through a new awareness of professional and personal roles in doctor-patient relations. The continuity of care models should be rethought by integrating CHs and PC. Adequate PC training for young doctors (at pregraduate and postgraduate levels) can change doctors' vision and daily practice in assisting patients at the end of life.

Remote motivational interviewing to improve patient self-care and caregiver contribution to self-care in heart failure (REMOTIVATE-HF): Rationale, design, and methodology for a multicentre randomized controlled trial.

In patients with heart failure (HF), self-care, and caregiver contribution to self-care (i.e., the daily management of the disease by patients and caregivers) are essential for improving patient outcomes. However, patients and caregivers are often inadequate in their self-care and contribution to self-care, respectively, and struggle to perform related tasks. Face-to-face motivational interviewing (MI) effectively improves self-care and caregiver contribution to self-care, but the evidence on remote MI is scarce and inconclusive. The aims of this randomized controlled trial will be to evaluate whether remote MI performed via video call in patients with HF: (1) is effective at improving self-care maintenance in patients (primary outcome); (2) is effective for the following secondary outcomes: (a) for patients: self-care management, self-care monitoring, and self-efficacy; HF symptoms; generic and disease-specific quality of life; anxiety and depression; use of healthcare services; and mortality; and (b) for caregivers: contribution to self-care, self-efficacy, and preparedness. We will conduct a two-arm randomized controlled trial. We will enroll and randomize 432 dyads (patients and their informal caregivers) in Arm 1, in which patients and caregivers will receive MI or, in Arm 2, standard care. MI will be delivered seven times over 12 months. Outcomes will be assessed at baseline and 3 (primary outcome), 6, 9, and 12 months from enrollment. This trial will demonstrate whether an inexpensive and easily deliverable intervention can improve important HF outcomes. With the restrictions on in-person healthcare professional interventions imposed by the COVID-19 pandemic, it is essential to evaluate whether MI is also effective remotely.

Technology-delivered motivational interviewing to improve health outcomes in patients with chronic conditions: a systematic review of the literature.

AIMS: Provide an overview of remote motivational interviewing (MI) interventions for chronically ill patients, and understand their degree of effectiveness on different health outcomes. METHODS AND RESULTS: A systematic review with meta-analysis was conducted using the following databases: PubMed, CINAHL, PsychInfo, and Web of Science. Eligibility criteria included studies that administered remote MI alone or in combination with other remote approaches. A narrative synthesis and two meta-analyses were performed. Fifteen studies met the inclusion criteria. MI administration almost exclusively occurred by telephone and individual sessions. Eight studies reported treatment fidelity aspects, and four declared adopting a theoretical framework. Most targeted outcomes were therapeutic adherence, physical activity, depression, quality of life, and mortality. Risk of bias varied markedly, with the largest source resulting from selection process and intervention performance. The two meta-analyses indicated a significant effect of MI on depression [standardized mean difference = -0.20, 95% confidence interval (CI): -0.34, -0.05, Z = 2.73, P = 0.006, I2 = 0%], and no effect of MI on glycosylated haemoglobin (mean difference = -0.02, 95% CI: -0.48, 0.45, P = 0.94, I2 = 84%). CONCLUSION: Remote MI can be a promising approach for improving depression in chronic disease patients. However, studies are inconclusive due to risks of bias, heterogeneity, and lack of reporting of interventionist's training, treatment fidelity, and theoretical frameworks' use. More studies with solid designs are needed to inform clinical decision-making and research. REGISTRATION: PROSPERO: CRD42021241516.

"Challenging Professional Boundaries": A Grounded Theory Study of Health Professionals' First Experiences of End-of-Life Care in Hospital.

Little is known about health professionals first experiences of End-of-Life care in hospital. This study aims to understand the psycho-social process that occurs when hospital-based health professionals engage in caring for a dying patient for the first time. We conducted a Grounded Theory study, with 19 health professionals. Challenging professional boundaries is the core category which explains the overall process. The theoretical model we conceptualized evidenced three phases: 1) building a relationship between patient/family and professionals, 2) the disrupting impact and 3) the reaction phase. Our analysis highlighted the initial strong impact of this experience, which brought professionals to perceive emotional suffering and feelings of inadequacy. The new aspect our grounded theory revealed is that all the categories are pertinent to all the professionals involved, therefore they explain important aspects of interprofessional collaboration in End-of-Life care.

Caregivers of Patients with Hematological Malignancies within Home Care: A Phenomenological Study.

The role of caregivers in homecare settings is relevant to the patient's wellbeing and quality of life. This phenomenon is well described in the literature for the oncological setting but not specifically for that of hematological malignancies. The aim of this study was to explore the experience of primary caregivers of patients with hematological malignancies within home care. We conducted a phenomenological study based on interviews with 17 primary caregivers of hematological patients. Analysis of the contents led to the identification of five main themes. Perhaps, the innovative aspects of this study can be summarized in three points: This service was demonstrated to fulfil the ethical aspects of providing the patient with a dignified accompaniment to the end of life. Secondly, the efficiency of the service and the benefit are directly dependent on the caregivers' wellbeing, so knowledge of the dynamics and emotions involved can lead to the development and implementation of programs for hematological malignancies. Lastly, a collaborative caregivers-professionals relationship can improve a sense of accomplishment for all parties involved, lessening the family's frustration related to not having done their best. Home care brings significant benefits for both the patient and the caregivers and fulfils the ethical obligation of providing the patient dignified end-of-life care.

Electrical activity of the diaphragm (EAdi) as a monitoring parameter in difficult weaning from respirator: a pilot study.

INTRODUCTION: A reliable prediction of successful weaning from respiratory support may be crucial for the overall outcome of the critically ill patient. The electrical activity of the diaphragm (EAdi) allows one to monitor the patients' respiratory drive and their ability to meet the increased respiratory demand. In this pilot study, we compared the EAdi with conventional parameters of weaning failure, such as the ratio of respiratory rate to tidal volume. METHODS: We studied 18 mechanically ventilated patients considered difficult to wean. For a spontaneous breathing trial (SBT), the patients were disconnected from the ventilator and given oxygen through a T-piece. The SBT was evaluated by using standard criteria. RESULTS: Twelve patients completed the SBT successfully, and six failed. The EAdi was significantly different in the two groups. We found an early increase in EAdi in the failing patients that was more pronounced than in any of the patients who successfully passed the SBT. Changes in EAdi predicted an SBT failure earlier than did conventional parameters. CONCLUSIONS: EAdi monitoring adds valuable information during weaning from the ventilator and may help to identify patients who are not ready for discontinuation of respiratory support.

Influence of body position, PEEP and intra-abdominal pressure on the catheter positioning for neurally adjusted ventilatory assist.

PURPOSE: Neurally adjusted ventilatory assist (NAVA) relies on the patient's electrical activity of the diaphragm (EAdi) for actuating the ventilator. Thus a reliable positioning of the oesophageal EAdi catheter is mandatory. We aimed to evaluate the effects of body position (BP), positive end-expiratory pressure (PEEP) and intra-abdominal pressure (IAP) on catheter positioning. METHODS: Twenty-one patients were enrolled in this study. In six different situations [supine or 45° head of bed elevation (HBE) at PEEP 5 and 15 cmH(2)O; left lateral anti-decubitus at PEEP 5 cmH(2)O; supine at PEEP 5 cmH(2)O with abdominal surgical belt (ASB)] the catheter position was evaluated for the stability of the EAdi signal and information provided by a catheter positioning tool (highlighted electrical activity in central leads, absence of p waves in the distal lead). RESULTS: With an optimal catheter position EAdi signals were stable for all tested situations. During "45° PEEP 15" and "supine PEEP 15" absence of p waves in the distal lead revealed a difference compared with "supine PEEP 5" (p = 0.03), suggesting a caudal shift of the diaphragm relative to the oesophagus. The analysis of the highlighted electrical activity in the central leads supports this finding, revealing an influence of PEEP, BP and IAP on EAdi catheter position (p < 0.01). CONCLUSION: PEEP, BP and IAP may affect the EAdi catheter position, although not compromising a stable signal. Additional information as provided by the catheter positioning tool is needed to ensure an optimal EAdi catheter position.