Quality of life, anxiety, depression and burden among stroke caregivers: A longitudinal, observational multicentre study.

AIM: To longitudinally describe stroke caregivers' quality of life, anxiety, depression and burden and to identify predictors of stroke caregivers' quality of life, anxiety, depression and burden. BACKGROUND: Caregivers have a key role in stroke survivor care and the first year of caregiving is the most challenging. To give tailored interventions, it is important to capture changes and identify predictors of caregiver quality of life, anxiety, depression and burden during the first year. DESIGN: A 12-month longitudinal study. Data were collected between June 2013-May 2016. METHODS: Changes in stroke caregiver quality of life, anxiety and depression and burden and their predictors were identified using linear mixed-effects models. RESULTS: The caregivers (N = 244) were 53 years old and mostly female. Caregiver quality of life did not change significantly over the 12 months, anxiety and depression decreased up to 9 months and caregiver burden decreased from baseline to 3 months, then increased up to 9 months. Higher caregiver quality of life was predicted by caregiver younger age, higher education, living with a stroke survivor, survivor older age and higher physical functioning; higher anxiety and depression were predicted by older caregiver age and younger survivor age; higher burden was predicted by caregiver male gender, the caregiver not living with survivor and survivor lower physical functioning. CONCLUSION: The first 9 months of caregiving are particularly problematic for caregivers. The trajectories of the above variables and their predictors may be useful for policy makers, clinicians, investigators and educators to give better care to stroke caregivers and their survivors.

Roles of Changing Physical Function and Caregiver Burden on Quality of Life in Stroke: A Longitudinal Dyadic Analysis.

BACKGROUND AND PURPOSE: The purpose of this study was to examine changes in stroke survivor and caregiver quality of life (QOL) and to determine whether changes in survivor physical functioning and caregiver burden (ie, the impact of the physical, psychological, and social demands of caregiving) influence changes in QOL. METHODS: Longitudinal design with 226 stroke survivor-caregiver dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed over 12 months. We measured survivor physical functioning, caregiver burden, and QOL (physical, psychological, social, and environmental) in both survivor and caregiver. Multilevel modeling was used to control for the interdependence of the data. RESULTS: Survivors (50% male sex) and caregivers (66% female sex) were 70.8 (SD=11.9) and 52.4 (SD=13.1) years old, respectively. Over the 12 months, stroke survivor's physical (γ=1.59; P<0.001) and psychological (γ=0.86; P<0.05) QOL significantly improved; social and environmental QOL did not P>0.05. Caregiver QOL, on average, did not significantly change over time P>0.05. Improvements in survivor physical functioning were associated with increases in survivor and caregiver physical and psychological QOL and survivor environmental QOL. Decreases in caregiver burden were significantly associated with improvements in caregiver physical, psychological, and environmental QOL but not with survivor QOL. CONCLUSIONS: QOL of stroke survivors and caregivers covaries and is greatly impacted by the physical function changes of the survivor. Dyadic approaches to stroke rehabilitation that acknowledge the interdependence of dyads are needed.

[The lived experiences of stroke caregivers three months after discharge of patients from rehabilitation hospitals]. / Il vissuto esperenziale dei caregiver di soggetti sopravissuti ad ictus tre mesi dopo la dimissione dei pazienti da un istituto di riabilitazione.

AIM: Caregiving of stroke patients has a long trajectory and the experiences of caregi- vers may change over time. Few studies have described the experience of stroke caregi- vers three months after discharge of patients from rehabilitation hospitals. This study describes the experience of stroke caregivers three months after patients are discharged home from a rehabilitation hospital. METHOD: phenomenological study RESULTS: Seven themes emerged from analysis: deeply-changed life; re-appreciation of the relationship with patient and family members; increased workload; difficulties in getting support from the national health-care system; lack of preparation for caregiving; difficulties in coordinating caregiving, family and personal life; relief after patient's recovery. CONCLUSIONS: A comprehensive understanding of stroke caregivers' experience during the three months after patient discharge can support the development of educational interventions aimed at improving the caregiver preparation for the care of patients.

Psychometric evaluation of the Stroke Impact Scale 3.0.

BACKGROUND: The Stroke Impact Scale 3.0 (SIS 3.0) is widely used to measure quality of life in stroke survivors; however, previous studies have not tested the original 8-factor structure of the scale. In addition, previous studies have shown floor and ceiling effect and weak reliability within the scale. OBJECTIVE: The aim of this study was to evaluate the psychometric characteristics of the SIS 3.0, including its construct validity (factorial structure, concurrent and contrasting group validity), floor and ceiling effect, and reliability. METHOD: A cross-sectional design was used to study 392 stroke survivors enrolled in 16 rehabilitation facilities across Italy. Factorial structure of the SIS 3.0 was tested with confirmatory factor analysis. Concurrent and contrasting group validities were evaluated with other scales measuring functional capacities, neurological functions, cognition, anxiety, depression, and generic quality of life. Floor and ceiling effects were evaluated by determining the percentages of patients with the minimum and the maximum score at SIS 3.0. Reliability was determined by Cronbach's α and test-retest. RESULTS: Participants were 71 years old on average (SD, 11 years); 55% were men. Confirmatory factor analysis revealed a new 4-factor structure that fitted the data better than the original 8-factor structure did. Concurrent and contrasting group validity of the new 4-factor structure was supportive and no floor and ceiling effects were found. Internal consistency and test-retest reliability ranged between 0.79 and 0.98. CONCLUSION: The new factorial structure of the SIS 3.0 with 4 factors showed better psychometric properties than the original 8-factor structure did. This evidence supports further use of the SIS 3.0 in clinical practice and research.

Quality of life in stroke survivor-caregiver dyads: a new conceptual framework and longitudinal study protocol.

AIM: To describe a new conceptual framework and the research protocol of a study designed to examine the quality of life in stroke survivor-caregiver dyads. BACKGROUND: Stroke has a significant impact on the patient-caregiver dyad. Few studies have been guided by a specific conceptual framework which considers the interactions among pre-existing situations prior to stroke, the new situation caused by the stroke and the moderating effects of environmental and caregiver-related variables. DESIGN: Longitudinal study. METHODS: A sample of stroke survivor-caregiver dyads will be enrolled at patient discharge from rehabilitation hospitals and will be surveyed every 3 months for 1-year. Hypotheses generated from the conceptual framework will test predictors, mediators and moderators of stroke survivor and caregiver quality of life from the pre-existing situation prior to the stroke, the new situation mediation poststroke and situation moderators. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship, Rome, December 2013. DISCUSSION: This study seeks to identify variables in the pre-existing situation prior to the stroke (e.g. living condition), the new situation mediation poststroke (e.g. type of stroke and caregiver burden) as well as situation moderators (e.g. social support) that influence stroke survivor-caregiver dyad's quality of life across the stroke trajectory. Also, the study will inform clinical practice and research by identifying variables that are potentially modifiable and therefore amenable to intervention. The proposed framework will also be helpful for future research focused on stroke survivor-caregiver dyads.

[Mutuality in caregiving: a literature review]. / La mutualità nel caregiving: una revisione della letteratura.

INTRODUCTION: Mutuality, understood as a feeling of intimacy and positive relationship between caregiver and care receiver, is gaining an increasing interest in the scientific arena in the light of socio-demographic change and the increase in chronic degenerative diseases. The purpose of this article is to carry out a critical analysis of the literature on mutuality in order to identify predictors and outcomes. METHOD: A literature search was carried out the databases PubMed, CINAHL, PsycInfo, and ASSIA Sociological. Twenty (20) articles were selected. By analyzing critically all articles, emerges that mutuality is a key variable in the process of care giving and in mental and physical health of both caregiver and care-receiver. In the caregiver, high levels of mutuality are associated with less stress, depression and burden to a better quality of life and self perceived health; in patients high mutuality is able to speed up the recovery from the disease, to reduce anxiety and depression and to improve the quality of life. CONCLUSION: Future studies aimed at the study of this variable also in the Italian population could be of support in developing programs to improve quality of life of caregivers and care receiver.

Chronic kidney disease and mobile health: quality of renal nutritional APPs in Italy.

BACKGROUND AND AIM: Patient with chronic kidney disease (CKD) must adhere to a nutritional therapy characterized by a restrictive dietary scheme. Nutritional self-care can be enhanced through the use of nutritional apps. The purpose of this study is to evaluate the characteristics of specific nutritional apps for chronic renal failure available in Italy. METHODS: A systematic search of mobile apps was conducted by two academic researchers in three Italian App stores: Google Play Store, Apple Store and Huawei AppGallery. Of the 1602 apps identified, 2 apps (Miku; MyFIR) were evaluated with the Italian version of a Mobile Application Rating Scale (MARS-ITA) by a multidisciplinary team of 20 professionals. RESULTS: The study found that the two selected apps, available in the Google Play Store and Apple Store, aim to increase well-being through the acquisition of knowledge and behavioral change; but none identify health goals that should be achieved. The strategies used by the two applications are: information, education, monitoring and cognitive-behavioral challenge. The technical analysis showed adequate protection of personal data but only the most downloaded app (Miku) provides the possibility to share content, to send reminders and to browse when offline. CONCLUSIONS: The main Italian app stores have two applications to monitor physical health and nutrition in patients with renal disease. Although these are free, easily accessible, navigable and valid in terms of health monitoring and information, greater availability of the offer would be desirable.

[The COVID-19 emergency management in Nephrology: a cross-sectional survey on the procedures management to deal with the pandemic].

From mid-March 2020, the pandemic caused by COVID 19 has placed health facilities in front of the need to implement a rapid and profound reorganization. However, many hospitals have not had time to organize a rapid and effective response, both for the speed of spread of the virus, and for the lack of previous experience with a pandemic of this magnitude. With the aim of assessing the knowledge and adoption of the procedures and recommendations disseminated by hospitals during the COVID-19 pandemic, in the dialysis and hemodialysis services of Italian centers, a cross-sectional survey was designed by the Society of Nurses in Nephrology (SIAN). The online survey was conducted among nurses who work in the Italian services of dialysis and hemodialysis during the first and second waves. The online survey was completed by 150 nurses. Although hospitals have set up protocols and procedures for patient management during the COVID-19 pandemic, among participants not all were aware of it. With regard to the training of personnel in the use of personal protective equipment, 18.6% declared that they have not received it. The majority implemented specific precautions for patient management, awareness and information.

A family nurse-led intervention for reducing health services' utilization in individuals with chronic diseases: The ADVICE pilot study.

OBJECTIVES: Intensive health services' utilization is common in older individuals affected by chronic diseases. This study assessed whether a structured family nurse-led educational intervention would be effective in reducing health services' use (readmissions and/or emergency service access) among older people affected by chronic conditions. METHODS: This is a non-randomized before-after pilot study. A sample of 78 patients was recruited from two general practices in Italy and 70 among them were followed for 8 months. Standard home care was provided during the first four months' period (months 1-4), followed by the educational intervention until the end of the study (months 5-8). The intervention, based on the teach-back method, consisted of by-weekly 60-min home sessions targeting aspects of the disease and its treatment, potential complications, medication adherence, and health behaviours. Rates of health services' use were collected immediately before (T0), and after the interventions (T1). Differences in utilization rates were examined by the McNemar's test. Potential factors associated with the risk of health services' use were explored with a Cox proportional hazard regression model. RESULTS: The sample (n = 78) was predominantly female (n = 50, 64.1%), and had a mean age of 76.2 (SD = 4.8) years. Diabetes mellitus was the most frequent disease (n = 27, 34.6%). McNemar's test indicated a significant reduction in health services' use at T1 (McNemar χ 2 = 28.03, P < 0.001). Cox regressions indicated that time and patient education, as well as their interaction, were the only variables positively associated with the probability of health services' use. CONCLUSION: A teach-back intervention led by a family nurse practitioner has the potential to reduce health services' use in older patients with chronic diseases.

Psychometric Characteristics of the Mutuality Scale in Stroke Patients and Caregivers.

PURPOSE: The Mutuality Scale (MS) is composed of four theoretically derived factors (love, shared pleasurable activities, shared values, and reciprocity), but this structure has never been confirmed. Also, research involving the patient's perspective on the MS is limited. In this study, we tested the factorial structure of the MS and its reliability in stroke patients and caregivers. DESIGN AND METHOD: Cross-sectional, with a follow-up after 15 days for test-retest reliability. A total of 248 stroke patients and 163 stroke caregivers completed the MS. Stroke patients and their caregivers were enrolled in 10 rehabilitation hospitals across Italy. MS factorial structure was analyzed using confirmatory factor analysis; internal consistency reliability was evaluated with Cronbach's α and model-based internal consistency index; test-retest reliability was evaluated with intraclass correlation coefficient. RESULTS: Confirmatory factor analysis supported the four-factor structure of MS in its patient and caregiver version (CFI = 0.94; RMSEA = 0.06, for both). Cronbach's αs and model-based internal consistency index were >0.90 and intraclass correlations ranged between 0.66 and 0.93 in MS patient and caregiver version. IMPLICATION: This study tested the theoretical dimensions of the MS in stroke patients and their caregivers. From a scientific and clinical point of view, an assessment of stroke patient and caregiver mutuality would allow dyadic approaches to data analysis and care that account for the nonindependence between the stroke patient and the caregiver.

The experience of stroke survivors three months after being discharged home: A phenomenological investigation.

BACKGROUND: Stroke is the leading cause of disability in adults, and has a significant impact on individuals, families, and society. Returning home after a stroke represents a challenging experience for patients who struggle to adapt to their new life conditions. Although many studies have been conducted on stroke survivors, few studies have focused on the lived experience of patients at three months after they came home after rehabilitation. AIMS: The aim of this study was to describe the experience of stroke survivors three months after being discharged home from rehabilitation hospitals. METHOD: A phenomenological methodology was used to conduct the study. Participants were enrolled from rehabilitation hospitals in the cities of Rome and Naples. Interviews were conducted at the patients' house and data were analysed with a phenomenological approach FINDINGS: Fifteen stroke survivors were interviewed (mean age 70 years; 12 males). Five themes emerged from the phenomenological analysis of the interviews and the field notes: deeply changed life, vivid memory of the acute phase of the stroke, slowed lives, relief after recovering from stroke, being a burden for family members. CONCLUSIONS: The results of this study give an overview of the experience of stroke survivors three months after being discharged home. From a clinical perspective, health care providers need to provide more interventions to help survivors to cope better with life changes and encourage them to adapt to daily life limitations caused by stroke. Also, health care providers should improve support provided to family members of stroke patients.

Psychometric properties of the Caregiver Preparedness Scale in caregivers of stroke survivors.

OBJECTIVE: To evaluate the psychometric characteristics of the Caregiver Preparedness Scale (CPS) in caregivers of stroke survivors. BACKGROUND: Caregiver preparedness can have an important impact on both the caregiver and the stroke survivor. The validity and reliability of the CPS has not been tested for the stroke-caregiver population. METHODS: We used a cross-sectional design to study a sample of 156 caregivers of stroke survivors. Construct validity of the CPS was evaluated by confirmatory factor analysis (CFA). Internal consistency and test-retest reliability were also evaluated. RESULTS: Caregivers were, on average, 54 year old (SD = 13.2) and most were women (64.7%). CFA supported the unidimensionality of the scale (comparative fit index = 0.98). Reliability was also supported: item-reliability index and item-total correlations above 0.30; composite reliability index = 0.93; Cronbach's alpha = 0.94; factor score determinacy = 0.97; and test-retest reliability = 0.92. CONCLUSION: The CPS is valid and reliable in caregivers of stroke survivors. Scores on this scale may assist health-care providers in identifying caregivers with less preparedness to provide specific interventions.

[Reliability of caregivers in assessing the quality of life of stroke survivors: an explorative study]. / Affidabilità del caregiver nel valutare la qualità di vita del paziente con ictus cerebrale: uno studio esplorativo.

UNLABELLED: Reliability of caregivers in assessing the quality of life of stroke survivors: an explorative study. Introduction. Not all stroke survivors are able to assess their quality of life (QOL), thus a caregiver could provide important information on patients' QOL. OBJECTIVE: To assess caregiver's reliability in measuring QOL in stroke survivors. METHOD: Fifty (50) patient-caregiver dyads were recruited. Patients, hospitalized in rehabilitation facilities, were administered the Stroke Impact Scale 3.0 (SIS 3.0) patient version, the Barthel Index, the Modified Rankin Scale, and the National Institute of Health Stroke Scale. Caregivers completed the SIS 3.0 proxy version. RESULTS: The mean scores of the SIS 3.0 patient version were very similar to the proxy version and ranged from 19.1 vs 16.2 for the Hand function domain to 83.81 vs 81.85 for the Communication domain. Caregivers tended to underestimate patients' QOL although scores were not significantly different. Intraclass correlations between the patient version and the proxy version of the SIS 3.0 were highly significant (p<0.001), with coefficient over 0.80. Lower coefficients were observed for the Social participation (0.58), Emotion (0.64) and Communication (0.79) domains. CONCLUSIONS: Caregivers were more reliable in assessing the physical rather than psychosocial domains.