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.
Highlights
Living with a chronic disease is a critical condition that has become increasingly common in the last two decades
The ad hoc Narrative Interview We developed an ad hoc narrative semi-structured interview aimed at exploring the sensemaking processes related to the three key domains of the disease experience of chronicity introduced in the paragraph above: (1) interpretation, (2) dialogical processes, and (3) management
Disease variability interpretation domain We identified three Sensemaking modalities (SM) for the articulation of this domain, referred to the processes of narrative sensemaking of disease origin, the determinants, and symptom triggers: (1) “closed,” (2) “hypothetical,” and (3) “confused”. 1
Summary
Living with a chronic disease is a critical condition that has become increasingly common in the last two decades. Sanitary settings and caregivers are called to respond to the physical and psychological needs of patients on a daily basis, for their entire life This new condition requires a transformation of the Health Service as well as of the caregiving system in order to reduce the economic and human burden of chronicity (De Ridder et al, 2008; Quattropani et al, 2018a; Forestier et al, 2019). The Health Service is called upon to respond to life-span care needs using ad hoc comprehensive models of treatment and care (Perrin et al, 2007) In such cases, receiving a diagnosis of a chronic condition in pediatrics is a matter that involves parents as the primary caregivers at first (Cipolletta and Amicucci, 2015). 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
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