Perceptions of informal care givers: Health and support services provided to people with multiple sclerosis

Abstract

Purpose. About 30% of people with multiple sclerosis (MS) need some form of home care assistance, with 80% of that assistance provided by informal or unpaid care givers. This study focuses on the care givers to 530 more disabled people with MS, with the objective to learn more about informal care giving to people with greater dependency and need for assistance.

Method. The data presented in this study were collected in a national survey of 530 informal care givers to people with MS who have greater levels of physical dependency.

Results. About 70% of informal care givers responded that assisting the person with MS perform daily activities or personal care took up the largest amount of their care giving time. Care givers also reported a range of home and community-based services that would make care giving easier or improve the care provided. However, informal care givers generally reported low satisfaction with health insurance coverage of these services, especially coverage by health maintenance organizations and other managed care plans.

Conclusions. Lack of health insurance coverage of needed home and community-based services can reduce the quality of informal care provided, as well as increase the burden of informal care giving.

Keywords:

• Care giver
• multiple sclerosis
• health services

Acknowledgments

This research was supported by a contract from the Health Care Delivery and Policy Research Program of the National Multiple Sclerosis Society (HC 0043). The authors thank Dr. Nicholas LaRocca, Associate Vice President, Health Care Delivery and Policy Research Program, and Dorothy Northrop, National Director of Clinical Programs, at the National Multiple Sclerosis Society for their assistance with this research. The Lone Star Chapter of the NMSS recruited volunteers to pretest the care giver survey questionnaire. The Central New England Chapter and the Ozark Branch of the Mid America Chapter of the NMSS recruited volunteers to participate in focus groups for this study. In addition, the authors are grateful to the care givers of the people with MS who participated in the focus groups, the pretest of the survey questionnaire, and the telephone interviews. Without their cooperation and input, this study could not have been completed.