The family support group in the treatment of amyotrophic lateral sclerosis

Support groups are effective means of addressing the psychosocial needs of patients with amyotrophic lateral sclerosis and their families. An education-support group for family members of patients with ALS has been functioning at New England Medical Center in Boston and has been found to be successful in helping families and, therefore, patients to cope with this stressful illness. This article discusses the benefits of this group to families and patients, family members' roles in caring for and coping with this illness, the group's structure and development, and gives suggestions to others who are considering running a group of this kind. Our experience has shown that group participants feel less isolated, less fearful, and less threatened than prior to their involvement in the group and gain a sense of empowerment that enables them to meet the extensive caretaking demands of the patient with ALS. The contribution that an ALS Family Support Group provides is a component in the care of the patient with ALS that can be critical to families dealing with this illness.