The perspective to notice Emotional Inhibition Difficulty in Home-Based Patients with ALS by Visiting Nurses　　　　　　　　　　　　　　　
Danbara Shiho
Master's thesis, Mar. 2025
This study aimed to clarify the perspective to notice Emotional Inhibition Difficulty in Home-Based Patients with ALS by Visiting Nurses. The results of interview surveys were qualitatively and inductively categorized. There were 93 valid responses (19.4%). The perspectives identified included: 'Strong expression of anger through facial expressions and speech,' 'Care with no foreseeable end,' 'Strong obsessions and meticulous demands,' 'Personal rules based on rigid beliefs,' 'Behavior that oppresses caregivers,' 'Personality changes over time,' and 'Instability and breakdown of the support system.

在宅筋萎縮性側索硬化症(ALS)患者が経験した情動制止困難 当事者の語りに焦点を当てて
Aug. 2024

Perspectives of Visiting Nurses on Recognizing Emotional Disinhibition in Home-Based ALS (Amyotrophic Lateral Sclerosis) Patients　　　　　　　　　　　　　　　
Danbara Shiho, Single work
Preparing manuscript for submission to the Japan Society of Nursing for Rare and Intractable Diseases, Jun. 2026
This study aimed to clarify the perspective to notice Emotional Inhibition Difficulty in Home-Based Patients with ALS, as recognized by Visiting Nurses. Interview data were analyzed using a qualitative inductive approach. Among the 626 questionnaires distributed, 93 valid responses were obtained, resulting in a valid response rate of 14.9%. The perspectives identified included the recognition of intense expressions of anger through facial expressions and behaviors, the perception of care as endless and without resolution, the presence of strong obsessions and detailed demands, rigid adherence to personal rules based on unique beliefs, verbal and behavioral abuse directed toward caregivers, personality changes observed over time, and instability or breakdowns in the support system.

Emotional Disinhibition Experienced by Home-Based ALS (Amyotrophic Lateral Sclerosis) Patients: Focusing on Their Narratives　　　　　　　　　　　　　　　
Danbara Shiho; Nishi Rubiko, Joint work
Monthly Magazine: Rare Diseases and Home Care - May Issue, Jul. 2025
Based on the narrative of a Home-Based Patient with ALS, this study organized the experiences of Emotional Inhibition Difficulty from the patient’s own perspective.
One individual with ALS was interviewed regarding their personal experiences with Emotional Inhibition Difficulty, as well as the difficulties they had recognized through consultations with fellow ALS patients. The data were analyzed qualitatively and inductively to identify underlying patterns. The patient demonstrated an awareness that the emergence of Emotional Inhibition Difficulty was not a reflection of personality traits, but rather a symptom of the disease. Furthermore, Emotional Inhibition Difficulty was described as a condition severe enough to potentially lead to the collapse of the caregiving system.

Emotional Disinhibition Experienced by Home-Based ALS (Amyotrophic Lateral Sclerosis) Patients: Focusing on Their Narratives　　　　　　　　　　　　　　　
Danbara Shiho; Nishi Rubiko
24 Aug. 2024, 29th Annual Scientific Meeting of the Japan Academy of Nursing for Rare Diseases
Based on the narrative of a Home-Based Patient with ALS, this study organized the experiences of Emotional Inhibition Difficulty from the patient’s own perspective.
One individual with ALS was interviewed regarding their personal experiences with Emotional Inhibition Difficulty, as well as the difficulties they had recognized through consultations with fellow ALS patients. The data were analyzed qualitatively and inductively to identify underlying patterns. The patient demonstrated an awareness that the emergence of Emotional Inhibition Difficulty was not a reflection of personality traits, but rather a symptom of the disease. Furthermore, Emotional Inhibition Difficulty was described as a condition severe enough to potentially lead to the collapse of the caregiving system.

A Literature Review on the Unique Challenges of Interacting with Home-Based ALS (Amyotrophic Lateral Sclerosis) Patients Due to Emotional Disinhibition　　　　　　　　　　　　　　　
Shiho Agata; Rumiko Nishidome; Ikuko Masuda; Naoko Shimokawa
10 Dec. 2023, 43rd Annual Scientific Meeting of the Japan Academy of Nursing Science
Based on the hypothesis that Emotional Inhibition Difficulty is a contributing factor to the unique challenges in engaging with Home-Based Patients with ALS, a literature review was conducted.
Ten cases describing specific situations perceived as causes of relational breakdown were examined and compared with perspectives from previous studies on Emotional Inhibition Difficulty. The situations included frequent and detailed care demands such as suctioning and repeated calls, difficulties with positioning, expressions of anger and verbal abuse, and self-centered behavior lacking consideration for others. These were found to correspond with the perspectives of “strong obsessions,” “intense expression of anger,” and “diminished capacity for empathy and consideration,” as identified in prior research.

A Nationwide Survey of Visiting Nurses’ Awareness and Experiences of Emotional Lability in Home-Dwelling Patients with Amyotrophic Lateral Sclerosis (ALS)　　　　　　　　　　　　　　　
Shiho Danbara; Momoyo Kawai

Appropriateness of Perspectives for Visiting Nurses to Recognize Emotional Lability in Home-Dwelling Patients with ALS　　　　　　　　　　　　　　　
Shiho Danbara; Momoyo Kawai; Rumiko Nishi

Apr. 2023 - Present
The Japan Academy of Nursing Science (JANS)　　　　　　　　　　　　　　　

Apr. 2023 - Present
Japan Intractable Illness Nursing Society　　　　　　　　　　　　　　　

A collaborative group to explore Emotional Inhibition Difficulty　　　　　　　　　　　　　　　
Apr. 2023
Within the group 'Thinking Together About Emotional Inhibition Difficulty,' which consists of nurses from the Tokyo Metropolitan Institute of Medical Science, physicians from Tohoku Medical and Pharmaceutical University and Tokyo Metropolitan Neurological Hospital, and staff from the NPO Beyond Borders operated by persons with severe disabilities, we are engaged in activities to raise awareness of Emotional Inhibition Difficulty, a non-motor symptom of amyotrophic lateral sclerosis (ALS).