Factors in Maintaining Long-term Care at Home－A Qualitative Study of Patients with Amyotrophic Lateral Sclerosis（ALS） and Their Family Caregivers

Abstract

Objective：The purpose of this study was to investigate favorable factors in maintaining long-term care at home for persons with amyotrophic lateral sclerosis（ALS）who were introduced by the Patients’ Association and who had a positive outlook on life.

Methods：A survey conducted by interviews with patients and their family caregivers was carried out,and their attitudes toward long-term care were examined. The subjects comprised five patients（2 women, 3 men, aged from36 to 62）and their six caregivers （2 wives, 2 husbands, and one set parents）. Four patients had been continuing home mechanical ventilation for between 3 and 10 years.

Results：Most caregivers had accepted their own role as “an appointed task.” A positive relationship between the patients and member of their family was a crucial factor in continuing home care. It was of importance for ALS patients and their caregivers to be supported mentally by both informal networks and formal care services. After being physically and mentally stable for several years, patients and their families. started to consider their life “natural and normal” and not something special.

Conclusion：If patients and their families can accept their life as normal it will enhance their strength and enable them to continue stable home care.