Gianluca Pucciarelli

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.

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.

Psychometric characteristics of the mutuality scale in heart failure patients and caregivers

BACKGROUND Higher patient-caregiver mutuality is associated with improved patient and caregiver outcomes, but no studies have tested the psychometric characteristics of the mutuality scale (MS) in heart failure (HF) patient and caregiver population. OBJECTIVES To test the validity and reliability of the MS. METHODS A cross-sectional design. The MS validity and reliability were tested with confirmatory factor analysis (CFA) and hypothesis testing, and with Cronbachs alpha and model-based internal consistency index, respectively. RESULTS CFA supported the validity of the MS in the HF patient and caregiver versions. Hypothesis testing showed significant correlations between both versions of the MS and anxiety, depression, quality of life, and self-care. Also, MS caregiver version scores correlated significantly with caregiver preparedness. Cronbachs alphas and the model-based internal consistency index ranged between 0.72 and 0.94 in both versions. CONCLUSIONS The Mutuality Scale showed supportive validity and reliability for HF patients and caregivers.

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.

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.