Caregivers’ Sensemaking of Children’s Hereditary Angioedema: A Semiotic Narrative Analysis of the Sense of Grip on the Disease

Abstract

Background and aims: In pediatrics receiving a diagnosis of a chronic condition is a matter that involves caregivers at first. Beyond the basic issues of caring for the physical condition of the ill child, how caregivers face and make sense of the disease orients and co-constructs their children’s sensemaking processes of the disease itself. The aim of this article is to explore the experience of a rare chronic illness, a pediatric case of Hereditary Angioedema (HAE) from the caregivers’ perspective. Hereditary angioedema is characterized by subcutaneous swellings that can involve internal as well as external mucosal tissues and is highly variable and unpredictable in terms of severity, frequency, and where it occurs.A qualitative narrative semiotic analysis of n. 28 maternal narratives on their children’s disease experience. Narratives were collected by an ad hoc interview on three domains of the disease experience: (A) interpretation of disease variability, (B) dialogical processes, and (C) management of the disease. Subsequently, we executed a TwoStep cluster analysis for categorical data to detect cross-sectional profiles of the maternal sensemaking processes of the disease.Results: The coding grid was built analyzing the characteristics of the narrative links that orient the connection between the elements of the experience within each domain: (A) the connection among events, for the domain of disease variability interpretation, (B) the connection between self and other, for the dialogue domain, and (C) the connection among sensemaking and actions, for the disease management domain. Results from the cluster analysis show three narrative profiles: (1) adempitive; (2) reactive; (3) dynamic.Discussion: Profiles will be discussed in light of the general conceptual framework of the Sense of Grip on the Disease (SoGoD) highlighting the importance of those sensemaking processes which, instead of relying on a coherent and closed interpretation of the disease, are characterized by a degree of tolerance for uncertainty and the unknown.

Parental Attunement, Insightfulness, and Acceptance of Child Diagnosis in Parents of Children With Autism: Clinical Implications

“…The importance of starting and supporting a process of acceptance relating to the child diagnosis ( Guerriero et al, 2017a , b ; Guerriero and Di Folco, 2017 ; Freda et al, 2019 ; Waizbard-Bartov et al, 2019 ) and parental insightfulness could support the relational experiences that determine the child “way of being” that is strongly connected to the non-verbal aspects of parental communication, especially parental attunement ( Di Renzo, 2017 ). According to Trevarthen and Delafield-Butt (2013) , responsive and attuned communication and a pattern of timed and sensitive actions can compensate for children experiencing repetition of uncertain and anxious attempts, when psychomotor attunement with perceptive and motor experiences become confused ( LaGasse and Hardy, 2013 ).…”

The experience of living with a chronic disease in pediatrics from the mothers’ narratives: The Clinical Interview on Parental Sense of Grip on the Disease

“…In the light of these considerations, the aim of this article is to explore the everyday experience of chronic illness for three different chronic conditions: hereditary angioedema, Type 1 Diabetes and Juvenile Rheumatoid Arthritis, from the perspective of parental SoGoD on their child's illness. The chronic illness experience is explored with the clinical interview on Parental SoGoD on the Disease (SoGoD-P) (Freda et al, 2019) from a dual perspective: on the one hand, examining the general issues of the pediatric chronic illness experience; on the other hand, comprehending the specifics of the experience of each condition.…”

“…The Clinical Interview on The Parental Sense of Grip-SoGoD(P)-on chronic disease (Freda et al, 2019) is a clinical interview aimed at understanding the characteristics of the sensemaking processes related to the domains of interpretation, dialogical processes, and disease management discussed in the previous paragraph. The questions were constructed with the aim of obtaining diachronic narratives of the disease experience, by evoking both the semantic memory (e.g.…”

“…Healthcare systems are overloaded by the growth of the caring needs due to chronicity. New paradigms of research and intervention are required, aiming at fostering patients’ lay competencies and engagement and their active involvement in their caring needs (Borghi et al, 2016; Busch et al, 2019; Domecq et al, 2014; Forsythe et al, 2016; Freda et al, 2019; Grande et al, 2014; Graffigna and Vegni, 2017).…”

Psychological processes in the experience of hereditary angioedema in adult patients: an observational study

“…Based on previous findings on children [ 8 , 12 ], we hypothesized that alexithymia, stress and emotion regulation may have an impact on angioedema severity also in adults. Indeed, perceived stress, alexithymia and emotion regulation may be strictly related processes influencing the severity of the disease.…”