Engaging with Charcot-Marie-Tooth disease: a grounded theory approach

Abstract

This qualitative study focuses on the experiences of adults with Charcot-Marie-Tooth disease (CMT), a neuromuscular condition, and explores what living with this disease encompasses. The study is structured around two fundamental research questions that amount to people's experiences regarding how (in which areas) the disease affects them, and how they continuously deal with it.

In order to address the research questions, data gathered from participants was qualitatively analysed, using grounded theory methodology. The study culminated in the formulation of a substantive grounded theory as to how affected people manage the disease's manifestations in order to optimise their continuous adaptation and well-being. A tripartite of concerns comprised the core concern, whereas the basic social psychological process of engaging with CMT emerged as the core strategy used by affected people to deal with the concerns. The core's three sub processes constituted three mostly sequential stages that CMT-affected people pass through in their adaptation to the disease. The identified theory and existing stage models of adaptation to chronic illnesses and disabilities were juxtaposed and discussed. The three stages were compared to and integrated with the relevant literature. These actions revealed that there are a number of new formulations and processes contained in all three stages, and that the first and last stages (orientating and optimising) are themselves unique. It emerged that there is no theoretical end-point to the adaptation process, but that a relative saturation point amounted to a variant of an outcome, called qualified wellness. For most, the core strategy was successful in resolving the main concern. A few, however, still experienced fear and agony about inheritance and dependency issues.

This study contributes, via the route of knowledge and insight empowerment, to the well-being of people with CMT, including those who are struggling but do not know that they have this disease. Broadening of insight may also benefit medical help professionals and streamline service delivery.