The role of the meaning-making process in the management of hereditary angioedema

The first descriptions of hereditary angioedema (HAE), in the early 1500’s, ascribed it to “neuroticism.” However, HAE is a rare autosomal dominant disease that causes swelling of the skin and mucosal tissues, but that varies greatly in terms of localization, frequency, and intensity both within and between individuals. Although the identification of a genetic origin dates to 1963, psychological stress is still one of the most reported triggers, often being cited in the conclusions of research and clinical reports. Despite this widespread assumption, the role of stress in HAE has never been analyzed in depth. In this chapter, the authors present their reflections on the results of the qualitative component of a broader mixed-method research on the interaction between stress and emotion regulation in the variability of clinical presentation of HAE. The role of psychology is discussed—as brought into play by the request of the medical team—in terms of research and intervention for HAE in medical contexts. They start with the results from a semantic and semiotic analysis of an ad-hoc semi-structured interview of the parents of young patients on the variability of the disease. This reliance on “lay experts” allows for a broader understanding of the phenotypic variability of HAE, as well as of the relational contexts of patients, including the relationship between the family, patient, and doctor. They conclude by highlighting the importance of shared meaning-making processes when seeking to influence strategies for the management of the disease

L'influenza dei fattori psicologici nello sviluppo degli attacchi di Angioedema Ereditario in l'età evolutiva

L’Angioedema Ereditario da carenza di C1 Inibitore (C1-INH-HAE)(Cicardi et al., 2014) è una malattia rara che costringe i pazienti a confrontarsi con un’estrema variabilità interindividuale ed intraindividuale delle sue manifestazioni, e che compromette la qualità di vita delle persone che ne sono affette e delle loro famiglie (Banerji, 2013; Caballero et al., 2014). Nonostante i progressi della ricerca nell’individuazione dell’origine genetica, le cause dell’insorgenza dei sintomi restano ancora poco chiare. Recenti lavori scientifici annoverano lo stress psicologico tra i potenziali triggers degli attacchi di angioedema in base a dati auto-riferiti dai pazienti. La connessione tra stress psicologico ed attacchi tuttavia non è mai stata esplorata. (Fouche at al., 2013; Zotter at al., 2014). Obiettivo del contributo è approfondire il rapporto tra processi psicologici, stress e regolazione emotiva nelle manifestazioni di Angioedema Ereditario in età evolutiva. Inoltre, si intende osservare se tali aspetti assumano caratteristiche peculiari in questi pazienti oppure se riflettano condizioni comuni a giovani affetti da diverse patologie croniche

A Mental Health First Aid Service in an Italian University Public Hospital during the Coronavirus Disease 2019 Outbreak

The recent outbreak of coronavirus disease 2019 (COVID-19) has been extremely stressful and has produced fear and anxiety throughout the population, representing a psychological emergency. This work aimed at presenting a mental health first aid service established within an Italian university public hospital context to address four different population targets (i.e., people vulnerable to mental health problems, health-care professionals, people in isolation, and general citizenship). Specifically, the organizational structure comprising four different areas (i.e., management, clinical, communication, and research) and first data collected from the foundation of the service until 3 May 2020 are presented. Findings indicated that anxiety and fear of contagion were the main motivations prompting both the general population and health-care professionals to ask for a psychological help. Furthermore, findings indicate that clients’ current quality of life was perceived as lower than in the past but also that imagined in the future, highlighting the importance of psychological first aid interventions. This service may represent an example for helping mental health professionals in developing similar services in their local realities, promoting health and individual and community resilience

Hereditary Angioedema and Psychological Stress an Exploratory Study” oral presentation at SAM, Skin and Allergy Meeting

Hereditary Angiooedema (HAE) is characterized by a deficit or by a malfunctioning of C1- 1nh; its symptoms vary greatly from one individual to another. Some studies suggest that some of the attacks of HAE may be triggered or affected by stress and emotional states (Zotter et al.,2014), however this link has never been examined in depth. Moreover, recent research has highlighted the influence of the neurological correlatives of stress in theactivation of the compliment cascade, a system already compromised in those suffering from HAE [1] [2]. Aims With this pilot study we intend to explore the connection between stress, emotional states and the variability of the attacks, in a sample of 11 individuals aged between 4 and 17 with HAE, together with their parents. It is a preliminary study, which aims to explore whether emotions have a direct or indirect influence on the development of HAE. Methods We adopt a multi method approach, using widely -used, internationally recognized tests, listed below: - Semi-structured interviews with parents to explore their interpretation on the variability of the attacks; - CBCL to exclude cases of psychopathology; - CLES to evaluate the perceived level of stress; - AQC on alexithymia; - LEAS-C on emotional awareness; - TEMAS on the functions of personality; - A diary of symptoms, noting the frequency, intensity and the location of the attacks. Results Although 92% of parents believed that emotional states played an important role in the triggering of attacks, the young patients were unable or had difficulty articulating their emotional states, more in general with their processes of emotion regulation (De Steno et al., 2013). This may well be connected to the high levels of stress experienced by nearly all the patients seen in the CLES test. These high levels of stress, in 9 out of 11 cases, correlated with the frequency of the attacks. Finally, from the CBCL results no personality disorder emerged connected to HAE. Conclusions. We believe that by encouraging skills aimed at expressing emotions caused by stress, prove useful in the treatment and management of individuals suffering from HAE. The results of this pilot study highlighted the need for further research on the role of psychological factors connected to HAE

Stress and Psychological Factors in the Variable Clinical Phenotype of Hereditary Angioedema in Children: A Pilot Study

Hereditary angioedema due to C1 inhibitor (SERPING1) deficiency (C1-INH-HAE) is characterized by unpredictable and variable attacks of cutaneous andmucosal edema carrying amajor impact on daily life. While stress and psychological factors are usually suggested as trigger factors of HAE, they have not been sufficiently investigated. Our aim is to study, for the first time in a group of pediatric patients, the role of psychological stress and emotion regulation competence in the variability of attacks ofC1-INH-HAE. The study involved 12 children aged 6–14with a diagnosis of C1-INH-HAE [a diagnosis of C1-INH-HAE must be based on presence of 1 major (1–3) clinical criterion and 1 laboratory criterion] as well as their parents in the following: (1) a qualitative analysis of parent interviews on disease variability and (2) a quantitative evaluation of the psychological profile, perceived stress levels, and emotion regulation competence of the young patients. In the interviews, 91% of parents believe emotional and stress factors are involved in triggering C1-INH-HAE. Fifty-five percent of the young patients report a limitation in their daily activities [Child Behavior Checklist (CBCL)], 83% of them experience an above-average number of stressful events [Coddington Life Events Scale (CLES)], and 91% of them manifest deficits in recognizing and naming emotions [Alexithymia Questionnaire for Children (AQC); Level of Emotional Awareness Scale for Children (LEAS-C)]. Our data show that parents believe psychological stress to be involved in the onset of HAE attacks and children show high levels of stress and broad deficits in the emotion regulation competence. Whether stress is a trigger or a secondary effect of the disease experience, we suggest that improving patients’ emotion regulation competence may increase their resilience to stress, ultimately leading to a better management of the illness

HEALTHCARE AND CULTURE: SUBJECTIVITY IN THE HEALTHCARE CONTEXTS.

The book deals with current issues, pertinent every healthcare relationship. Changes in medicine as well as some constant aspects over time arise within a cultural ground and generate new questions and issues that are not only purely medical, but also bioethical, social, political, economic and psychological of course. On the one hand, changes in medicine generate new questions for society, on the other hand, the society poses new questions to the medicine, new challenges, and in some cases they can conflict with consolidated models and practices. Never the progress of Western medicine and its therapeutic practices have been as significant as in the last decades but the increase of specific competence and effectiveness of medical treatments are not linearly translated into an increase of consensus, dialogue and alliance between medicine and society. How does psychology take on a position of interlocutor towards medicine and its transformations? How does Cultural Psychology, Health Psychology, Clinical Psychology confront themselves with the processes of meaning making generated by medicine? The interest of the book is aimed to grasp the construction of processes of cultural, relational and subjective meaning in the dialogical encounter between medicine and society, between doctor and patient. The book intends to focus in particular on two specific plans: on the one hand, to present a reflection and analysis on contemporary medicine and its on‐going transformations of the healthcare relationship; on the other hand, to present and discuss experiences of intervention and possible models of intervention addressed to healthcare and doctor‐patient relationships during its crucial steps (consultation, formulation and communication of diagnosis, therapy, conclusion). The book’s purposes are aimed to discuss crucial and current issues on the borders between medicine and psychology: consensus and sharing, decision‐making and autonomy, subjectivity and narration, emotions and affectivity, medical semeiotics and cultural semiotics, training of physicians, and epistemological, theoretical and methodological issues. CONTENTS Series Editor’s Preface: Caring for Health Care: Cultural Processes in Medicine, Jaan Valsiner. Introduction: The Meaning Making Processes of Healthcare Relationship in the Current Scenario, Maria Francesca Freda and Raffaele De Luca Picione. PART I: HEALTHCARE RELATIONSHIP AS ARENA OF MEANING. FROM CULTURAL ISSUE TO SUBJECTIVE CONSTRUCTION OF ILLNESS. Medicine as a Complex Set of Cultural Systems of Meanings, Raffaele De Luca Picione. The Border Into Wonderland: When Words Between Doctor and Patient Is Not Enough, Jensine Nedergaard. Autonomy: A Concept at the Crossroads of Medicine and Psychology, Giovanni Guerra. The Role of the Meaning‐Making Process in the Management of Hereditary Angioedema, Livia Savarese, Maria Bova, Raffaella Falco, Maria Domenica Guarino, Gerarda Siani, Paolo Valerio, and Maria Francesca Freda. PART II: HEALTHCARE RELATIONSHIP AS ARENA OF TRANSFORMATION: FROM COMMUNICATION TO DIALOGUE. Psychological Scaffolding in the Healthcare Relationship: A Methodological Proposal, Maria Francesca Freda, Raffaele De Luca Picione, and Francesca Dicè. Breaking Bad News: Theory and Practice for Healthcare Professionals’ Training, Giulia Lamiani, Daniela Leone, Elaine C. Meyer, and Elena Vegni. Psychologists and Family Physicians in an Experience of Collaborative Care in Italy: An Effort Towards Integration and Against Stigma, Luigi Solano, Barbara Cordella, Michela Di Trani, Rosa Ferri, and Alessia Renzi. Clinical Psychology in Hospital Setting, Renzo Carli, Rosa Maria Paniccia, Silvia Policelli, and Andrea Caputo. PART III: MENTAL HEALTHCARE AS PARADIGMATIC ARENA TO UNDERSTAND THE COMPLEXITY OF HUMAN RELATION. From Psychopathology to Service. A New View of the Clinical Psychology Intervention, Sergio Salvatore, Claudia Venuleo, Valeria Pace, Marianna Puglisi, Mari Tandoi, Annalisa Venezia, Rossano Grassi, and Gianna Mangeli. Recovery, Paternalism and Narrative Understanding in Mental Healthcare, Tim Thornton. “Why Do You Then Not Shit?” Diagnosis and the Semiotic Sphere, Yair Neuman. PART IV: PREGNANCY AND MOTHERHOOD: A CHALLENGING ARENA FOR DIALOGUE BETWEEN MEDICINE AND PSYCHOLOGY. Birth Experience as Socially and Culturally Regulated Event, Kristiina Uriko. The Generative Function of a Healthcare System: Linking Meanings Between Chronic Illness and Motherhood, Giorgia Margherita, Maria Carlino, and Francesca Tessitore.Doctor‐Patient Relationship in Face of Grief/Mourning: The Case of Gestational Losses, Vivian Volkmer Pontes and Ana Cecília Bastos.Conclusion: Healthcare Relationship: An Open Space Dialogue in Search of Its Own Forms, Maria Francesca Freda and Raffaele De Luca Picione. About the Authors