Health Self-Management and Care Coordination by People With Disabilities and Chronic Health Conditions

BACKGROUND AND PURPOSE: Although professionals commonly consider care coordination and management to be professional services delivered to people with disabilities, people with disabilities and chronic health conditions in fact commonly manage and coordinate numerous key aspects of their own care on a weekly or even daily basis. From an occupational standpoint, care coordination and management is an instrumental activity of daily living (IADL). However, such activities are usually absent from lists of essential activities of daily living (ADLs) and IADLs, and no validated scale currently exists to characterize how people with disabilities and serious health conditions self-manage and coordinate their own care. The purpose of this study is to advance knowledge of key activities involved in care coordination and management by people with disabilities and supportive significant others (SSOs) by demonstrating the content validity of the Care and Service Coordination and Management scale and to test its internal consistency.

DESIGN AND METHOD: For this descriptive, scale-development study, survey items were developed using a study of the literature and a series of focus groups with people with disabilities, followed by repeated testing and modifications to provide successive improvements. After preliminary development, questionnaire items were administered to 23 individuals with acquired brain injury and 17 SSOs.

RESULTS: Both people with disabilities and family respondents confirmed content validity and agreed that the survey addresses important care coordination and management issues. Most activities clustered around issues of disability-service coordination (e.g., attendant care, transportation scheduling, equipment) and medical, nursing, and rehabilitative needs (e.g., taking own medications, communication with doctors’ offices, complex scheduling, therapists, dealing with insurance or government gatekeepers and financial sources, specific nursing needs). The internal consistency of care coordination domains for medical or rehabilitative and independent living needs for people with brain injury and their SSOs ranged from α = .774 to .945.

CONCLUSION: Persons with disability must and do engage in complex self-care coordination and management activities that are essential to maintaining independent living and health. These activities should be considered to be ADLs or IADLs. These activities are complex and multifaceted but have significant internal consistency. They are measureable and should be assessed to improve care. Occupational therapy has a long history of helping people improve performance of complex IADLs. Occupational techniques should similarly be used to improve self-care coordination and management by people with disabilities. The success of such interventions should be measurable in terms of improvements in the person’s activities to coordinate and manage his or her own independent living and health care needs.

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