Respite reconsidered - A typology of meanings based on the caregiver's point of view

Respite has been de facto conceptualized as a service rather than an outcome. In this study, the meaning of respite was determined from the perspective of caregivers. The first phase of the project involved in-depth interviews and a focus group. The second phase included a random sample of caregivers in Victoria, BC, Canada screened through household residence telephone numbers. Two hundred ninety-four caregivers were interviewed face-to-face, utilizing both structured and open-ended questions asking caregivers about the meaning of respite to them. Six distinct themes emerged from the qualitative and more structured interviews. Categories included: stolen moments, relief, physical/mental stimulus, connections, minimizing its importance, and angst-free care receivers. This study recommends that policymakers and service providers redefine respite as an outcome rather than a service, taking caregivers' experiences into account. Over 60% of the caregivers defined a break in ways that policy makers, professionals, and researchers would not. Importantly, meanings did not vary by gender or class (as well as other demographic variables such as age), caregiver, care receiver, or social support variables. (C) 2001 Elsevier Science Inc. All rights reserved.