An Exploratory Study of Decision Making by Informal Caregivers of Individuals With Multiple Sclerosis

Abstract

The types of assistance informal caregivers provide has been well documented. However, the day-to-day decisions and the resources caregivers use to make decisions have not been investigated. This study explored the decisions made by informal caregivers of multiple sclerosis care recipients and the resources they use to inform those decisions. A qualitative, exploratory-descriptive research design was used. Two separate in-depth face-to-face, audiotaped interviews were completed with each caregiver. Interviews were transcribed verbatim, and data were analyzed using thematic content analysis. Results revealed that multiple sclerosis caregivers make decisions in four topic areas: healthcare, financial, social, and family. Decisions increased in complexity and severity as the care recipient’s disease progressed. Triaging acute illnesses, managing medication side effects, and end-of-life decisions were the most difficult for caregivers. Caregivers used a variety of resources to support their decision making and identified areas where resources were lacking. By more fully understanding the types of decisions informal caregivers make and the resources they use to aid these decisions, healthcare professionals can develop interventions that support these devoted individuals, increasing the quality of life for both the caregiver and the care recipient.