Family and friends provide the majority of care for chronically ill and disabled people. Depending on the definition used for family caregivers, research studies indicate that between 10-40% of adults provide some type of assistance to family members with chronic conditions (Marks, Lambert, & Jun, 2001; Ory and colleagues, 2000). Family management of chronic conditions has both positive and negative effects on the physical and psychological health of each member of the family (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Hooker, Monahan, Bowman, Frazier, & Shifren, 1998; Liang, Krause, & Bennett, 2001; Marks, 2001; Newsom & Schulz, 1998). The nature and consequences of family management is important to understand and measure in order to promote health, improve conditions, and control costs for families managing chronic conditions. Valid and reliable measures of family management are needed in order to test the effects of interventions customized to the unique characteristics of families managing chronic conditions in clinical trials.
In this paper, I will report issues related to developing and testing a precise family management measure, the Shared Care Instrument (SCI). The SCI was developed from naturalistic inquiry designed to explore the family dyad’s subject perceptions related to managing chronic conditions and preventing pressure ulcers (Sebern, 1992, 1996). In this naturalistic inquiry concept development was used, and a new concept was identified, shared care. Shared care was defined as a pattern of interaction used successfully by families to prevent pressure ulcers. Shared care consists of three elements: communication of symptoms, decision making, and reciprocity. From the qualitative data the investigator developed the Shared Care Instrument (SCI) to measure this pattern of family interaction. The SCI is composed of 39-items used to measure both positive and negative aspects of dyad communication, decision making and reciprocity. A likert scale is used to measure the dyad’s responses to the statements (range 1=totally disagree to 6=totally agree). In a pilot test, with a sample of 111 community dyads, the reliability for the Shared Care Instrument was 0.82 (Chronbach alpha coefficient). At this time further testing of the psychometric properties and predictive validity of the SCI is being conducted.
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