Silvio Simeone

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 (&ggr;=1.59; P<0.001) and psychological (&ggr;=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 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 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 patients 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 Cronbachs 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). Cronbachs 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.

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 dyads 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.

The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease

Background: Congenital Heart Diseases (CHDs) afflicting children are estimated in 8 per 1000 live births. Recent advances in surgery and medical treatments allowed an improvement in survival rates leading to changes in diseases management as chronic conditions. Parents involvement during clinical pathways is considered an essential component of care, but frequently they experience stress and anxiety conditions during the care path. These feelings are typical of the pre and peri-operative period, however they don’t disappear easily and sometimes they can increase after hospital discharge, affecting the family environment and its behaviors. Aim of the work: The purpose of this qualitative study is to examine the lived experience of parents during the time just after their children return home from hospital after undergoing surgery for CHD. Methods: Parents were enrolled and interviewed as a prepositive sampling until concept saturation using Cohen’s phenomenology approach. A quantitative approach was also applied using SF-12 questionnaire. The study was conducted in two Italian hospitals: the Pediatric Heart Surgery Center of the Fondazione Toscana G. Monasterio Institute in Massa and the Pediatric Cardiac Surgery Center of the Federico II University Hospital in Naples. Results: The main themes emerged after the analysis were “happiness and uncertainty”; “chronic psychophysical fatigue”; “the rediscovery of a strong link with health care professionals”. Conclusions: Fully understand the life experience of these families will allow the implementation of targeted health interventions through the implementation of shared strategies and tools to reduce families and children discomfort after hospital discharge.

Facilitatori e Barriere dell’aderenza al trattamento con CPAP nei pazienti affetti da Sindrome da Apnee Ostruttive del Sonno: revisione della letteratura

Introduzione: Il trattamento efficace della sindrome da apnee ostruttive nel sonno (OSAS) con pressione continua positiva per via aerea (CPAP) può ridurre la morbilità e la mortalità, ma i tassi di aderenza sono bassi senza un chiaro consenso delle cause. Obiettivo: Lo scopo della revisione della letteratura è stato quello di identificare i fattori cognitivi, barriere e facilitatori correlati all’aderenza terapeutica al trattamento con CPAP nei pazienti affetti da OSAS. Risultati: Dagli studi selezionati emerge che i fattori che incidono maggiormente sull’aderenza sono: socio economici, terapie associate, patologia e servizi sanitari. Uno status socio economico svantaggiato, effetti collaterali legati all’interfaccia, la presenza di co-morbilità, scarse conoscenze del paziente e la limitata capacità di garantire percorsi educativi validi sono considerati le maggiori barriere per una scarsa adesione alle cure. Conclusioni: Comprendere i fattori predittivi e quelli che ostacolano l’aderenza terapeutica nei pazienti con OSAS in trattamento con la CPAP, può aiutare i professionisti sanitari nella scelta di interventi assistenziali efficaci. Agire sui fattori che influenzano le scelte dei pazienti, come le conoscenze, le capacità, il locus of control ed i valori personali, migliora il livello di self-efficacy e ne sostiene l’aderenza al trattamento. Parole Chiave: OSAS, CPAP, aderenza, barriere, self-efficacy 2017, Volume 3, Nr.1, pp. 1-14 Facilitatori e Barriere dell’aderenza al trattamento con CPAP nei pazienti affetti da Sindrome da Apnee Ostruttive del Sonno: Revisione della letteratura 2 Facilitators and barriers of adherence to treatment with CPAP in patients with Obstructive sleep apnoea syndrome: review of the literature. Introduction: Effective treatment of obstructive sleep apnoea syndrome (OSAS) with continuous positive air pressure (CPAP) may reduce morbidity and mortality, but adherence rates are low without a clear consensus of the causes. Objective: The aim of the literature review was to identify the cognitive factors, barriers and facilitators related to therapeutic adherence to treatment with CPAP in patients with OSAS. Results: Selected studies show that the factors that most affect adherence are: socio-economic, associated therapies, pathology and health services. A disadvantaged socio-economic status, side-effects related to the interface, the presence of co-morbidities, poor patient knowledge and the limited ability to guarantee valid educational pathways are considered the greatest barriers to a lack of access to treatment. Conclusions: Understanding the predictive factors and those that impede therapeutic adherence in patients with OSAS under treatment with CPAP, can help healthcare professionals to choose effective care interventions. Acting on the factors influencing patient choices, such as knowledge, skills, locus of control and personal values, improves the level of self-efficacy and supports adherence to treatment.

Studio fenomenologico sul vissuto esperienziale dei genitori di bambini ricoverati in una Terapia Intensiva di cardiochirurgia: comprendere per aiutare

Introduzione: I difetti cardiaci sono molto comuni nell’età pediatrica; spesso i genitori scoprono, dopo la nascita, queste patologie ed apprendono che l’intervento di cardiochirurgia è l’unica soluzione. Il ricovero del proprio bambino in una Terapia Intensiva comporta elevati livelli di stress, ansia, depressione. Gli infermieri assumono un ruolo attivo nell’assistenza del piccolo degente ma anche nella presa in carico dell’intero nucleo familiare. Obiettivo: scopo dello studio è stato descrivere l’esperienza dei genitori dei bambini ricoverati in una unità di Terapia Intensiva cardiochirurgica. Metodo: disegno ermeneutico fenomenologico secondo Cohen. Risultati: dall’analisi di 16 interviste sono emersi 3 temi principali: la paura per la possibile perdita del proprio bambino; la sensazione di aver perso il ruolo di genitore e la bisogno di ricevere maggiori informazioni per poter essere parte attiva nel processo di cure. Conclusioni: Il ricovero di un bambino in una Terapia Intensiva e, nello specifico, di cardiochirurgia, impone al personale assistenziale la presa in carico dell’intero nucleo familiare. Gli Infermieri sono i primi professionisti dai quali i genitori si attendono tale coinvolgimento. Questo studio offre uno sguardo sull’esperienza vissuta dai genitori che hanno il proprio figlio ricoverato in una Terapia Intensiva di cardiochirurgia; inoltre può rappresentare lo spunto per ulteriori ricerche finalizzate alla olistica armonizzazione tra la diade (famiglia e bambino) spesso ingiustamente scisse durante il ricovero in Terapia Intensiva. Keyword: CHD, family, heart defects, infants, experience, cardiac surgery NapoliSana Campania Volume 3, Nr.2 pp 25-29, 2017 Studio fenomenologico sul vissuto esperienziale dei genitori di bambini ricoverati in una Terapia Intensiva di cardiochirurgia: comprendere per aiutare 2 Phenomenological study on the experiences of parents of children hospitalised in a Cardiac Surgery Intensive Care unit: understanding in order to help.

L’adesione alla vaccinazione antinfluenzale degli infermieri a contatto con pazienti immunocompressi

Introduzione: la vaccinazione antinfluenzale (VA) rappresenta uno degli interventi raccomandati per proteggere non solo operatori sanitari e pazienti ad alto rischio, ma la popolazione tutta. Lo scopo dello studio è stato valutare l’adesione alla VA da parte del personale infermieristico dedicato all’assistenza dei pazienti immunocompromessi presso l’A.O.U. “Federico II” di Napoli negli ultimi cinque anni. Ulteriori obiettivi sono stati: rilevare il fabbisogno formativo e comprendere i motivi della mancata adesione alla VA. Metodo: lo studio osservazionale è stato condotto da giugno a settembre 2015; è stato somministrato un questionario rivolto agli infermieri utilizzando un modulo di analisi on-line creato con la piattaforma G-Drive di Google. Risultati: sono stati somministrati un totale di 227 questionari con un tasso di adesione del 67.8%. Il 61.3% del campione creda nelle vaccinazioni quali strumenti importanti per la riduzione/eliminazione delle malattie. Nell’anno 2014-15, l’89% del campione non ha praticato la vaccinazione antinfluenzale. Negli ultimi 5 anni il 20.8% dichiara di essersi vaccinato soltanto una volta, l’11% due o più volte, mentre il 68.2% non si è mai vaccinato. Un ulteriore bisogno di informazioni è emerso nell’80% del campione. Conclusioni: l’assenza di un protocollo aziendale e le misconception sulla VA sembrano essere i principali elementi che hanno determinato i risultati. Vi è la necessità di attuare interventi capaci di stimolare gli operatori a comprendere l’importanza della VA, sviluppando una maggiore l’adesione.