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

Abstract

The Clinical Interview on the Sense of Grip on Chronic Disease has been administered to 68 mothers of children affected by Hereditary Angioedema (C1-Inh HAE), Type 1 Diabetes (T1D), Juvenile Rheumatoid Arthritis (JRA). The objectives are to detect general features of the experience of parenting children with chronic illness as well as the specificities of this experience related to the different conditions. Four Profiles of Sense of Grip were identified: Adempitive, Controlling, Reactive, Dynamic. The Sense of Grip Interview is an effective clinical tool for understanding the characteristics of the disease in daily life, which can help clinicians to encourage family adjustment to disease.

Giving Meaning to Non-Communicable Illness: Mixed-Method Research on Sense of Grip on Disease (SoGoD)

“…It is characterized by these modalities (ordered from the most to the less significant): for the function and organization of temporality, the modality defined "transformation"; for the function of integration, the modality defined "coexistence"; and for the function of orientation to actions, the modality defined "flexible". This cluster has been defined-consistent with all previous studies [44][45][46]-as Dynamic Profile, since the narratives that belong to it have in common dynamic, flexible and complex processes of sense-meaning-making. These narratives highlight a moving temporal trajectory: the disease is represented as a relevant biographical event, which has transformed life, and which continuously changes over time, concurrent with changes in symptoms, life cycles, needs and life contexts.…”

“…Results show a good adaptation of the Coding Grid, developed in a previous study with adult patients affected by Hereditary Angioedema [ 45 ] to narratives of patients affected by different non-communicable conditions. Furthermore, in previous research [ 46 ] the authors already developed and verified the extension of the use of the interview and the coding grid for the parents of chronic young patients (affected by several chronic illnesses). In the current study as well, the interview and the coding grid appear as congruent tools to explore the experience of illness in conditions of chronicity.…”

“…The coding of the narrative corpus was conducted through a theory-driven approach, starting from the functional perspective of the narrative [ 44 , 46 , 65 , 66 ]. The analysis of the narrative functions was conducted by identifying, in the narratives, the representative extracts of one of the five narrative functions described in the previous paragraph: temporal articulation, integration of the disease, expression of emotions, social sharing and orientation to action [ 44 , 45 , 46 , 67 ].…”

“…According to the relevance attributed to illness narratives, from the aforementioned semiotic and socio-constructivist perspectives, the authors have introduced in previous works a conceptual framework for understanding the sense-meaning-making process through illness narratives: the Sense of Grip on Disease (SoGoD) [ 44 , 45 , 46 , 47 ]. The word ‘ sense ’ is used in order to highlight the relevance of the sense-meaning-making process for the integration of illness into one’s experience.…”

“…Through an ad hoc semi-structured narrative interview, the model of SoGoD intends to capture the different modalities of each function, namely the different modalities through which people give meaning to their illness experience. In previous work, the authors have explored the Sense of Grip of parents of children affected by Hereditary Angioedema [ 44 ], of adult people suffering from Hereditary Angioedema [ 45 ] and of a wider sample of children suffering from different chronic conditions [ 46 , 59 ]. Such narrative interviews have always been shown to opportunely solicit in chronic patients a subjective presentation of their illness experiences from many perspectives.…”