Objective. This presentation describes caregiver and clinician involvement in the ongoing development and evaluation of the Caregiver Assistive Technology Outcome Measure (CATOM). This tool measures the impact of assistive technology interventions on the burden experienced by informal caregivers.
Main Content. Our preliminary goal was to create a conceptual framework that described the relevant outcomes of assistive technology provision for informal caregivers. To develop this framework, semi-structured interviews were conducted with informal caregivers of adults who used power mobility devices. This framework was then used to create a preliminary version of the measure. During initial testing we used cognitive interviewing (during which informal caregivers were asked to “think aloud” while they completed the CATOM) to help reduce item misinterpretation. The revised CATOM and a manual were then reviewed by clinicians and their feedback was integrated into both documents. Additional feedback from caregivers and clinicians who have used the tool is currently being obtained.
Results. The conceptual framework indicates that assistive technology and other contextual factors moderate the relationship between primary and secondary caregiving-related stressors and a caregiver's quality of life, health and participation. Based on this framework a two-part measure was developed and questions were refined based on cognitive interviews and clinician feedback. In the first part, caregivers identify all of activities that they help with. The first section of the second part measures caregiver's primary and secondary stressors, and physical and psychological health related to a specified caregiving related activity. The second section of the second part measures caregiver's participation in light of all of the assistance provided. Preliminary feedback from caregivers and clinicians suggest that some changes might be made to deal with non applicable items and to decrease respondent burden.
Conclusion. By including end-users in the measure development process we have tried to make a tool that is easy to use, relevant and meaningful for clinicians and caregivers. This ongoing process represents a departure from researcher focused measure development and will hopefully contribute to its uptake and use. Psychometric testing of the CATOM is currently underway.
Acknowledgments. This study was funded by the National Institute on Disability and Rehabilitation Research (grant #H133A060062).