Beyond the clinical context: the process of losing oneself living with Huntington's disease.

ABSTRACT:

Background

People with Huntington's disease (HD) have increased functional and cognitive dependence. While numerous clinical, genetic, and therapeutic management studies have been carried out, few studies have investigated the disease from the personal experience and the context of people living with HD. To better serve these patients, our purpose is to understand, from the perspective of the patient and their families, how people with HD cope with their daily lives outside the clinical setting.

Methods

Thirty-three affected or at-risk people participated in this study. Participants were interviewed at their homes on distinct occasions during a family visit. We analyzed the data using Grounded Theory, which allowed us to understand how people live with the disease on their o

SUBMITTER: Varela LE 

PROVIDER: S-EPMC9077866 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature