A Qualitative Study on Nursing Support for Patients with Hereditary Neuromuscular Disorders and their Families in Japan

Patients with hereditary neuromuscular disorders and their family members often experience emotions such as fear and shame toward the hereditary nature of those disorders.

This study aimed to examine the support provided by public health and visiting nurses to patients undergoing home-based treatment and their family members in Japan, focusing on how their needs were perceived prior to being connected with forms of support.

The Modified Grounded Theory Approach was employed. Semi-structured interviews were conducted with 10 participants working in nursing-related occupations, all of whom had given consent. The interview contents were included in the form of transcripts, and text excerpts related to support provided for the purpose of continuous home-based treatment were identified. Concepts were generated from these excerpts and organized into categories, which were used to create a diagram illustrating relationships among them.

Support provided by those in nursing-related occupations involved a process using appropriate methods through the flexible adaptation of multiple roles. The central category was “Techniques for Opening Up”; grounded in this, nurses also took on the role of “Supporting Serious Decisions.” Through “Team Play,” nurses strengthened the social support available in regional areas. Nurses further assumed the role of “Advisor for Hereditary Problems” while continuing to engage in “Continue[ing] to Connect across Generations.”

Individuals working in nursing-related occupations in Japan provided support to patients with hereditary neuromuscular disorders and their family members through flexible adaptation of multiple roles. These findings suggest the need for enhanced education and training in genetic nursing, particularly in community-based settings. These findings suggest the need for enhanced education and training in genetic nursing, particularly in community-based settings.