Relationship Between Resilience Factors and Caregiving Status of Families of Patients with Amyotrophic Lateral Sclerosis (ALS) in Japan.

Purpose: To identify innate and acquired factors leading to amyotrophic lateral sclerosis (ALS) caregivers' resilience, the relationships among these factors, and caregiving situations.

Design: Cross-sectional study.

Methods: Questionnaires measuring resilience, caregiver burden, and family functioning were mailed to caregivers of ALS patients in Japan.

Findings: The 370 responses showed that increases in both innate and acquired factors were related to having an ALS association membership, while decreases were associated with reduced family function. Increases in innate factors were related to employment and those consenting to ventilators, while decreases were associated with being male and having a sense of the care burden. Decreases in acquired factors were related to the presence of an alternative caregiver.

Conclusions: By identifying the caregiving situation based on innate and acquired factors, we were able to identify the significance and direction of specific caregiving support.

Clinical evidence: Community health nurses should focus on improving family function and creating a supportive environment. Further, support for male and non-working caregivers should be strengthened and consultation on the use of respiratory equipment promoted to reduce the caregiving burden.