What Are Policy-Makers Saying about Respite?

This report presents the findings from interviews with selected key informants who have a policy interest in respite for caregivers. The survey was carried out in January and February 2003 on behalf of the J.W. McConnell Family Foundation. It is being released in September 2003 in preparation for the launch of a national strategy on respite that will be spearheaded by several organizations, including the Victorian Order of Nurses, the Canadian Caregiver Coalition and the J.W. McConnell Family Foundation.This next phase of work embodies a deeper understanding of respite based on research conducted over the past few years and on knowledge gained through the practical application of various models of respite. It will seek to advance the major themes that have emerged from the work to date: respite as outcome, choice and voice. A one-page outline that explains these three themes is included below.

Respite: Meeting the Needs of CaregiversThis summary highlights the key themes on respite that emerged from the National Respite Care Project undertaken with financial support from the J.W. McConnell Family Foundation and the Seniors Independence Program of Health Canada.

The initial phase of the project, carried out by the Canadian Association of Community Care, included a literature review and national survey of providers and consumers of respite care. The McConnell Foundation subsequently funded projects in eight pilot communities to test the effectiveness of various models of support to caregivers. These projects sought to embody three major themes that emerged from both the research and national survey:respite as outcome, choice and voice.

The notion of respite as outcome encourages a fundamental shift in the way we understand the concept and practice of respite. Rather than viewing respite simply as a service to caregivers, it should be seen more appropriately as an outcome for caregivers. Respite is a sense of reprieve resulting from temporary relief from caregiving duties or from direct support for caregiver needs.

The sense of reprieve derives from a number of possible interventions delivered within or outside the home. These include, for example, temporary break, personal emergency system, information on care receiver needs, adult day care for the care receiver, housekeeping, outdoor home maintenance, counselling and peer support. Even being able to work a few hours or days a week is a form of relief for some caregivers who may worry about their financial circumstances or the security of their employment.

All caregivers experience relief in different ways. It is therefore essential to ensure that they can choose from a range of options the most appropriate supports – whether these are directed towards their own needs or towards those of the care receiver.

The fact that respite can derive from many different interventions highlights the importance of choice. The concept of choice is like a menu – it can even be visualized as a ‘buffet’ that offers many selections. Each individual will create a unique plate based on his or her needs and preferences.

But a selection of options in itself is not sufficient. Choice is real only if it embodies the notion of voice. Even when an array of options is available, decisions often are made by professionals in the “interests of the client.” Yet it is caregivers themselves who are actually best able to define their needs and the appropriate responses.

While the concepts emerging from the National Respite Care Project are profound, the underlying equation is fairly simple. Respite as outcome is a function of choice, which is genuine only when guided by voice. Caregivers are the ones who can best identify and select the supports that will lead to the desired outcome: respite.