A study of the burden of caring for patients with amyotrophic lateral sclerosis (MND) in Japan

Abstract

Objective: The purpose of this study was to explain the experiences of caregivers of patients with amyotrophic lateral sclerosis (ALS) receiving invasive ventilation in Japan. Methods: Subjects were 12 primary caregivers of ALS patients receiving invasive ventilation. Subjects were selected by theoretical sampling. Semi-structured interviews were undertaken with each subject. The data were analyzed using a grounded theory approach. Results: Caregivers tried to ‘find a meaning in prolonging life,’ which represented a core category. Two subcategories relate directly to the core category. These were ‘hesitation and regret over the decision’ and ‘feeling of being supported’. Each subcategory had four internal dimensions: ‘uncertainty of the future’, ‘communication’, ‘maintaining their own life’ and ‘support’. Conclusions: The process of caring for ALS patients is dynamic. The success or failure of continuing care depends on ‘finding a meaning of prolonged life’. It is important for nurses to be aware of that. Further investigation is required into appropriate intervention for caregivers of ALS patients.

Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan

“…In addition, previous research has reported on problem behavior, such as delirium, in patients with PD [23], the emotional effect of the heritability of SCD [30], the multitude of different symptoms of MSA DEL id="del69" orig=","; [31], and respirator-dependent patients and burden of caregiving [27]. Further study including these diseasespecific topics would be beneficial.…”

“…However, a quantitative evaluation of the care burden and depression among caregivers of individuals with intractable neurological disease has not been conducted in Japan. In addition, although the care burden and quality of life of caregivers for patients with PD [13,14,23,24] and ALS [25][26][27][28][29] have been well investigated worldwide, little research has been done on caregivers for patients with SCD and MSA until now [30,31].…”

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

“…Both NIPPV and LTMV increase survival time for people with MND, leading to an extended period of caregiving (33,35). Studies in the U.S., Japan and Germany point to the particular role of LTMV in caregiver burden, stress and distress (21, 35,36). Burden was reported in relation to how LTMV caregivers often become acutely aware of their responsibility for the survival of their family member, from managing the tracheostomy and suctioning the airway, to managing equipment and arranging back-up power sources.…”

“…At the end of life, as family caregivers lose the ability to interact with their loved ones, they begin to struggle with meaning and feel powerless (36). Pagnini (37) Australian study demonstrated that MND family caregivers are at risk of prolonged grief (42).…”

Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan

“…Our previous study, Outcomes Research of Specific Diseases (PI: S. Fukuhara), was conducted under the auspices of the Japanese Ministry of Health, Labor and Welfare to investigate the feelings of burden among caregivers of patients, mostly with ALS, and identify those burdens related not only to time constraints and depression, as conventionally noted, but also to the difficulty in finding meaning in prolonging a patient's life and to difficulties in receiving public nursing services [ 16 , 17 ].…”