Qualities of life design measures with chronic illness or disability

Abstract

Purpose: Rehabilitation assessment data influence decisions for the design of preferred lifestyles with a chronic illness or disability (CID). As a result, careful consideration of the source, type and scope of these data is needed in selecting appropriate procedures for their collection and use. This article proposes three essential qualities of data to assess in life design counselling with CID.

Method: A narrative analytical review approach is applied to synthesize findings from the research on person-oriented approaches to rehabilitation assessments. In addition, illustrative life design data on preferred community living solutions with CID for rehabilitation clients (n = 68) are presented. The concept of life design foregrounds the narrative analytical review on essential qualities of rehabilitation assessments to support life choices with disability.

Results: The evidence from a narrative synthesis of the person-oriented assessment literature and community living study suggests that effective life design with CID is enhanced with person-centric, resource enabling and participation focused data. Data that prioritizes personal values for participation enable persons with a disability jurisdiction in their life design choices.

Conclusion: Life design is a robust concept to understand the purposes for which rehabilitation assessment data are gathered, and the essential qualities for those data. When life design measures have person-centric qualities, people with CID are empowered to construct their own lives.

Implications for Rehabilitation

• Life design is an important process and outcome for gathering rehabilitation assessment data.

• Rehabilitation assessment measures for life design are person-oriented, resource enabling and participation focused.

• People with chronic illness and disability consider their personal values important to rehabilitation assessments for community living with chronic illness or disability.

Keywords::

• Life design
• measures
• ownership
• participation
• person centric data
• preferences
• resources

Acknowledgments

A draft of this article was presented at the Think Before You Measure Symposium, University of Sydney, Australia, June 29-30, 2011. The content is solely the responsibility of the author and does not necessarily represent the official views of the National Institute of Disability and Rehabilitation Research. The author gratefully acknowledge the contributions of key informants and their Centres for Independent Living.

Declaration of Interest: The article reports, in part, the findings of a community living with disability study funded by the National Institute of Disability and Rehabilitation Research, Grant # H133F070025. The author reports no declaration of interest.