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Background and objectives The treatment of chronic illnesses requires health care professionals (HCPs) to master several nontechnical skills to meet patient care needs. This article aims to describe the rationale and the inductive process through which a self-assessment tool for the nontechnical skills of hemophilia teams was conceived, developed, and tested. Methods Starting from an explorative analysis of hemophilia HCP work experiences, the process followed 3 phases: an in-depth analysis of hemophilia HCP skills; the questionnaire development; and a pilot study. Results Using the voice of HCPs as a starting point, the tool proved to be able to identify precise cross-professional and intercultural challenges as well as related required and/or acquired skills in the hemophilia field. Conclusion The proposed tool may contribute to providing HCPs with strategic knowledge to successfully perform everyday practices, to improve the effectiveness of hemophilia teams and the care model adopted by their centers, and to implement intercultural research in this field. It may be used to propose ad hoc training courses targeted by challenge, in order to fill the major gaps reported by the teams, or targeted by medical specialty or country (and therefore health care system) specificity.

BackgroundThe recognition of a symptom is needed to initiate a decision to engage in a behavior to ameliorate the symptom. Yet, a surprising number of individuals fail to detect symptoms and delay in addressing early warnings of a health problem.PurposeThe aim of this study was to test the hypothesis that symptom recognition mediates the relationship between monitoring for and management of symptoms of a chronic illness.MethodsA secondary analysis of existing cross-sectional data. A sample of 1,629 patients diagnosed with one or more chronic conditions was enrolled in the United States (US) (n = 407), Italy (n = 784) and Sweden (n = 438) between March 2015 and May 2019. Data on self-care monitoring, symptom recognition, and self-care management was assessed using the Self-Care of Chronic Illness Inventory. After confirming metric invariance in cultural assessment, we used structural equation modeling to test a mediation model where symptom recognition was conceptualized as the mediator linking self-care monitoring and self-care management with autonomous (e.g., Change your activity level) and consulting behaviors (e.g., Call your healthcare provider for guidance).ResultsSymptom recognition mediated the relation between self-care monitoring and autonomous self-care management behaviors (β = 0.098, β = 0.122, β = 0.081, p < 0.001 for US, Italy, and Sweden, respectively). No mediation effect was found for consulting self-care management behaviors.ConclusionOur findings suggests that symptom recognition promotes autonomous self-care behaviors in people with a chronic condition. Self-care monitoring directly affects consulting self-care management behaviors but not through symptom recognition. Further research is needed to fully understand the role of symptom recognition in the self-care process.

Silvia Potì,1 Laura Palareti,1 Frederica RMY Cassis,2 Sonia Brondi11Department of Education Studies “Giovanni Maria Bertin”, University of Bologna, 40126 Bologna, Italy; 2Faculty of Medicine Clinics Hospital, University of São Paulo, São Paulo, SP, 05403-000, BrazilBackground: Assessing the viewpoints of health care professionals concerning their work with chronic patients is a relatively new research topic, widely overlooked in the literature. However, understanding their subjective work experience is highly relevant for identifying problems and perceived resources, enhancing health service organisation, improving relationships or communication with patients, and maintaining well-being.Purpose and method: Qualitative data from the “Haemophilia Experience, Results and Opportunities” Initiative – a research program aimed at investigating the psychosocial aspects of hemophilia – were used to evaluate the experiences of 62 professionals from seven countries around the world. Semi-structured interviews were submitted to thematic analysis of elementary contexts with the aid of T-Lab software.Results: Five dominant themes emerged, identifying the main challenges that professionals have to deal with in their everyday work practice: caring for impaired adult patients; handling policies and stakeholders; providing counselling on diagnosis and reproductive choices; considering the role of family dynamics; coping with adolescent patients.Conclusion: The outcomes of the study provide an opportunity to develop the area of the non-technical skills in the core curriculum of those who work with chronic illnesses by focusing on cross-professional competences and by improving a comprehensive care model for hemophilia patients.Keywords: health care professionals, subjective experience, chronic illness, hemophilia, cross-cultural

When people receive a diagnosis of chronic or non-communicable disease, they need to reorganize their lives to understand and accommodate the changes associated with the new health condition. This reorganization, which involves the activation of a process through which meaning is given to the illness, could be fostered by narrative methods also in the context of Primary Care. The Sense of Grip on Disease (SoGoD) model intends to focus on the role of sense-meaning-making processes in the psychological adjustment to non-communicable illness, emphasizing the patients’ role in managing their own health condition. In this study, the authors propose a mixed-method research method which implies the adaptation of the narrative interview on the Sense of Grip on Disease. The interview was administered to 31 adults suffering from non-communicable diseases and has been analyzed with a theory-driven approach, which aims to explore the modalities of five narrative functions: organization of temporality, integration of illness, expression of emotions, social sharing and orientation to action. Through a Multiple Correspondence Analysis and a Cluster Analysis, the authors have identified two different ‘Grip Profiles’, called “Dynamic Profile” and “Compliant Profile”, representative of different degrees of flexibility, integration and adjustment to disease.

An umbrella review of systematic reviews and meta-analyses of randomized controlled trials (RCTs) was conducted to evaluate the existing evidence of Tai Chi as a mind-body exercise for chronic illness management. MEDLINE/PubMed and Embase databases were searched from inception until March 31, 2019, for meta-analyses of at least two RCTs that investigated health outcomes associated with Tai Chi intervention. Evidence of significant outcomes (P value < 0.05) was assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. This review identified 45 meta-analyses of RCTs and calculated 142 summary estimates among adults living with 16 types of chronic illnesses. Statistically significant results (P value < 0.05) were identified for 81 of the 142 outcomes (57.0%), of which 45 estimates presenting 30 unique outcomes across 14 chronic illnesses were supported by high (n = 1) or moderate (n = 44) evidence. Moderate evidence suggests that Tai Chi intervention improved physical functions and disease-specific outcomes compared with nonactive controls and improved cardiorespiratory fitness compared with active controls among adults with diverse chronic illnesses. Between-study heterogeneity and publication bias were observed in some meta-analyses. © 2020 Elsevier Inc.

Background: Self-care refers to behaviors that individuals adopt to prevent or maintain the stability of an illness (self-care maintenance), to monitor signs and symptoms (self-care monitoring), and to respond to signs and symptoms of an illness exacerbation (self-care management). A generic measure of self-care, the Self-Care of Chronic Illness Inventory, based on the Theory of Self-Care of Chronic Illness, was developed for use in individuals with any number and type of chronic conditions. Objective: The current study investigated the measurement equivalence of the Self-Care of Chronic Illness Inventory in individuals from three different cultural groups. We were interested in determining if Italians, Swedes, and Americans interpret the measure in a conceptually similar way. Methods: This cross-sectional study enrolled 1629 patients, 784 recruited in Italy, 438 in Sweden and 407 in the United States. Self-care (self-care maintenance, self-care monitoring and self-care management) was measured with the Self-Care of Chronic Illness Inventory. A multi-group confirmatory factor analytic approach was used to assess the equivalence of the measures across the three countries. Configural, metric, scalar and strict invariance were tested through a series of nested models where increasingly stringent equality constraints were posited. Results: Participants were mostly males (56.3%), older adults (69.8%) and had at least two chronic conditions. Results indicated that three out of four measurement equivalence levels were partially or totally supported in all three of the Self-Care of Chronic Illness Inventory scales. The partial scalar invariance level was reached for self-care maintenance [chi(2)(50)=63.495, p = 0.095; RMSEA =0.022, p = 0.999, 90% CI= 0.000 0.038; CFI =0.981; TLI =0.977; SRMR =0.036], self-care monitoring [chi(2) (22)=28.770, p = 0.095; RMSEA = 0.024, p = 0.978, 90% CI =0.000 0.046; CFI= 0.996; TLI=0.995; SRMR= 0.054], and self-care management [chi(2) (51)=91.334, p = 0.001; RMSEA =0.048, p = 0.576, 90% CI =0.031 0.063; CFI = 0.949; TLI= 0.937; SRMR = 0.047 ] scales. Conclusions: These findings suggest that patients in the three countries used an identical cognitive framework or mental model when responding and used the 1-5 Likert response scale in an almost identical way, almost without bias. In spite of sociocultural differences, patients in these countries seem to share the same fundamental view of self-care. The results of the Self-Care of Chronic Illness Inventory will be comparable in these countries. (C) 2019 Elsevier Ltd. All rights reserved. Funding Agencies|Center of Excellence for Nursing Scholarship (CECRI) , Rome, Italy; National Institute for Nursing ResearchUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USANIH National Institute of Nursing Research (NINR) [1R01NR018196]; Ruth L. Kirschstein NRSA Doctoral Fellow, Research on Vulnerable Women, Children and FamiliesUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USA [T32NR007100]

The main aim of the research is to study how youths affected by haemophilia, a congenital hemorrhagic chronic disease, make sense of their condition, with particular reference to the transition from early adolescence to early adulthood. We administered face-to-face semi-structured interviews to 20 Italian youths with haemophilia, aged 11–25 years, in on-demand treatment or prophylaxis therapy. A thematic analysis was performed with the help of software for textual data to figure out the main topics and the role of the two selected variables in the emergence of the themes (age and type of therapy). The results highlight how the experience of suffering from haemophilia is organized around five core themes (fragmented body, intimacy, family history, autonomy, dreams), that are more or less typical of some age group or kind of treatment. These results may be useful for designing appropriate and differentiated interventions for psychosocial support.

Background Schizophrenia is a complex illness in which genetic, environmental, and epigenetic components have been implicated. However, recently, psychiatric disorders appear to be related to a chronic inflammatory state, at the level of specific cerebral areas which have been found as well impaired and responsible for schizophrenia symptomatology. Hence, a role of inflammatory mediators and cytokines has been as well defined. Accordingly, the role of an acute inflammatory phase protein, the C-reactive protein (CRP) has been recently investigated. Objective The objective of the present study is to evaluate how PCR may represent a biomarker in schizophrenia, i.e. correlated with illness phases and/or clinical manifestation and/or psychopathological severity. Methods A systematic review was here carried out by searching the following keywords ((C-reactive protein AND ((schizophrenia) OR (psychotic disorder))) for the topics 'PCR' and 'Schizophrenia', by using MESH terms. Results An immune dysfunction and inflammation have been described amongst schizophrenic patients. Findings reported elevated CRP levels in schizophrenia, mainly correlated with the severity of illness and during the recrudescent phase. CRP levels are higher when catatonic features, negative symptomatology and aggressiveness are associated. CRP levels appeared not to be related to suicidal behaviour and ideation. Conclusion CRP and its blood levels have been reported higher amongst schizophrenic patients, by suggesting a role of inflammation in the pathogenesis of schizophrenia. Further studies are needed to better understand if CRP may be considered a biomarker in schizophrenia.

STUDY OBJECTIVES: The objective of this study was to assess the narratives from the recalled accounts of cataplexy attacks of patients with narcolepsy type 1 (NT1). METHODS: Twenty-two drug-naive adult patients meeting the International Classification of Sleep Disorders criteria for the diagnosis of NT1 referring to the Narcolepsy Center of the University of Bologna in the year 2017 underwent a semistructured interview focusing on their personal experiences during the cataplectic attacks. Verbatim transcripts were analyzed by thematic analysis of elementary contexts using T-LAB software. RESULTS: The thematic analysis performed on the entire body text showed 3 clusters that explained 36.2%, 34.1%, and 29.7% of the variance, respectively: a cluster related to situations that trigger attacks of cataplexy, a cluster to bodily sensations, and another control strategies during episodes. The thematic content highlighted a tendency to disregard emotional experiences, thus affecting the ability to name, recognize, and regulate critical emotions. CONCLUSIONS: The study showed that patients with NT1 spoke of their cataplectic attacks in terms of self-reported bodily experiences, trigger situations, and their management. Therefore, patients may have developed strategies of symptom management focused on emotion avoidance and/or inhibition. CITATION: Franceschini C, Fante C, Folli MC, et al. Giving a voice to cataplectic experience: recollections from patients with narcolepsy type 1. J Clin Sleep Med. 2020;16(4):597–603.

This paper explores the meanings that the experience of chronic physical illness assumes in relation to a specific aspect of the generative function, namely the experience of pregnancy and motherhood. Chronic illness and filiation are both seen as natural phenomena, but they are also products that modify our framework of meaning depending on the context; “critical events” that require a restructuring of identity on the part of the individual and of those institutional figures who represent the healthcare and social system. It describes a research project, in a hospital environment, involving psychological support for women diagnosed with Multiple Sclerosis who were preparing for motherhood. What emerges is that the psychological function can aid integration of seemingly incompatible meanings, namely those of chronic illness and the looking ahead and planning that are characteristic of motherhood. Thus the idea of health is synonymous with the kind of decision-making power that psychological support can give to people in a hospital setting.

L’engagement dei pazienti è riconosciuto come un elemento essenziale per la qualità dei servizi per le patologie croniche. Il contributo si propone di esplorare le dinamiche socioorganizzate che favoriscono l’engagement dei pazienti e la loro trasformazione da consumatori passivi di cura a partner. Sarà presentata una ricerca collaborativa, realizzata con due servizi di un grande ospedale del Nord Italia, in cui pazienti e personale sanitario hanno cooperato per valutare e riorientare i percorsi diagnostico-terapeutici verso processi di lavoro partecipati centrati sul paziente. Strumenti di analisi delle pratiche sono stati l’analisi proattiva del rischio clinico (HFMEA) e l’analisi psicosociale degli snodi decisionali, applicati nell’ambito di focus group misti (pazienti, medici, infermieri, psicologi, assistenti sociali). I risultati hanno consentito di evidenziare l’intrecciarsi di aspetti clinici e organizzativi nelle rappresentazioni della natura dell’engagement e la sua caratterizzazione come un processo oscillante e instabile. Inoltre, attraverso l’analisi del processo d’indagine, è stato possibile identificare assunti e valori professionali che rischiano di dar vita ad una partecipazione apparente. La ricerca offre indicazioni per la progettazione di pratiche di gestione collaborativa dei percorsi di cura. Patient engagement is recognized as essential for the quality of services for chronic diseases. The paper aims to explore the socio-organizational dynamics associated with the promotion of patients' engagement and their transformation from passive consumers of medical services to partner. We present a collaborative study conducted with two health care services of a large hospital in Northern Italy, where patients and healthcare personnel cooperated to evaluate and reorient the clinical pathways towards participated processes centered on the patient. Practices were analyzed through a revised version of proactive analysis (HFMEA) and the psycho-social analysis of decision nodes of the clinical pathway, applied in the context of focus groups with mixed composition (patients, physicians, nurses, psychologists, social workers). Results revealed different representations of the nature of engagement and its nature as a changing and unstable process. In addition, the study highlighted professional assumptions and values that can give rise to an apparent participation. The study offers indications for designing collaborative practices in managing clinical pathways.

Our aims were to compare the psychosocial functioning of a sample of adults with beta-thalassaemia major to that of a control sample and to examine the protective role of quality of relationship with parents during adolescence and perceived quality of care. A total of 85 Italian beta-thalassaemia major participants and 73 controls completed an ad hoc questionnaire. Compared with controls, beta-thalassaemia major participants did not differ on relationships with significant others and coping strategies. Beta-thalassaemia major participants reported higher scores on job satisfaction, self-esteem and self-description. The relationship with parents during adolescence and the perceived quality of care significantly predicted higher well-being and psychosocial functioning.

Il contributo presenta i risultati di una ricerca che ha coinvolto 137 pazienti adulti affetti da Talassemia Major. A partire da un’analisi della letteratura sulle dimensioni che caratterizzano un sistema di presa in carico della malattia cronica, è stato esaminato il rapporto tra elementi di gestione collaborativa della cura e la percezione di controllo della malattia in relazione a due outcomes: la soddisfazione per il servizio di cura e la soddisfazione per la qualità della vita. Inoltre si è voluto indagare in via esplorativa il contributo del costrutto “Senso di appartenenza alla comunità di cura” nel legame con i livelli di soddisfazione per il servizio e la qualità della vita. I risultati confermano la rilevanza del “Senso di appartenenza alla comunità di cura” quale significativo predittore di entrambi gli outcomes. La soddisfazione per le cure trova nella dimensione della fiducia l’altro significativo predittore, mentre la soddisfazione per la qualità della vita viene spiegata anche dall’apporto della percezione di controllo sulla malattia. Nella discussione vengono introdotti alcuni aspetti organizzativi che possono favorire lo sviluppo del senso di appartenenza. This paper presents the results of a study on 137 adult patients with βThalassemia major. On the basis of the literature on the dimensions characterizing the management of chronic illness, the paper has examined the relationship between factors of collaborative care management and perceived control in relation to two satisfaction outcomes: Quality of care and Quality of life. In addition, the paper includes an exploratory investigation of the role of the "Sense of belonging to the community of care" construct. The results confirm the relevance of the construct "Sense of belonging to the community of care" as a significant predictor of both outcomes. Satisfaction with care is also explained by the Trust factor, while Satisfaction with the Quality of life is predicted by the perceived control over the disease.