Lutz B; AcademyHealth. Meeting (2004 : San Diego, Calif.).
Abstr AcademyHealth Meet. 2004; 21: abstract no. 1966.
University of Florida College of Nursing, Health Care Environment and Systems, P.O. Box 100197, Gainesville, FL 32610 Tel. 352-273-6350 Fax NA
RESEARCH OBJECTIVE: To understand how disability and existing health and long term care (LTC) services affect the lives of adults with physical disabilities (AWPD) and to compare their perspectives with those of program managers and direct care providers, with a goal of designing a consumer-responsive health and LTC program. STUDY DESIGN: Using grounded theory methodology, in depths interviews were conducted in-person and by e-mail with APWDs and in-person with program personnel. In-person interviews were 60-90 minutes long. E-mail interviews took place over a period of several weeks. Questions in early interviews were loosely structured and open-ended, becoming more focussed as the study progressed. Data were analysed using constant comparative dimensional analysis. Data collection and analysis were ongoing as the program was implemented. Findings were used to augment program design. POPULATION STUDIED: 37 AWPDs and 26 direct care providers and managers (10 registered nurses, 8 social workers, and 8 managers) were interviewed between 1995 and 1997. The average age of the sample of APWDs was 40 and length of time with a physical disability ranged from 18 months to 55 years. Disabilities included spinal cord injuries, chronic degenerative conditions, congenital disorders, and other chronic disabling conditions such as asthma and heart disease. PRINCIPAL FINDINGS: Consumer perspectives focused on how the organization and delivery of health services affected their lives. Some findings included: the inability to communicate effectively or participate satisfactorily in decisions about their care; inadequate disability-related expertise of providers; a lack of accommodations to disabilities in most health care settings; a lack of centralized resources on disability-related treatments, technologies, opportunities; an incompatibility between the availability of resources/scheduling of services and other life demands (home and personal) and, overall, a lack of flexibility of funding and consumer exhaustion and frustration as a result of the tremendous amount of work required to access needed services. CONCLUSIONS: The findings helped to design a replicable model of care that provided a comprehensive range of health and long term care services within a capitated rate structure, focusing on improving clinical and functional outcomes, reducing fragmentation and inefficiency; increasing consumers' ability to remain in their residence of choice, and maximizing consumers' decision-making and choices about their own care. IMPLICATIONS FOR POLICY, DELIVERY OR PRACTICE: In response to the findings of this study, WPP services were re-designed to be more compatible with individual needs and preferences. Services that could not be adequately provided by the team were contracted to local providers within the same consumer-responsive framework. To ensure the flexibility necessary to meet each enrollee's individual needs, the program was fully integrated at all levels, including service delivery, management and funding streams.
Publication Types:
Keywords:
- Adult
- Delivery of Health Care
- Demography
- Disabled Persons
- Health Planning
- Health Services Needs and Demand
- Humans
- Interviews as Topic
- Long-Term Care
- Wisconsin
- hsrmtgs
UI: 103625000
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