In August 2018, RHA was awarded funding from the National Heart, Lung, and Blood Institute’s (NHLBI) Learn More Breathe Better Program to launch a pilot study of caregivers’ acceptance of the COPD Caregiver’s Toolkit.
The Toolkit was developed in 2017 by RHA, with the support of Illinois Institute of Technology, after a significant gap was found in educational and support resources dedicated to informal caregivers. Grounded in health theory, the Toolkit is organized into five sections, each which address a different aspect of caregiving.
In order to measure caregivers’ acceptance and perceptions of the usefulness of the Toolkit, RHA distributed 215 Toolkits to providers at Illinois pulmonary rehabilitation groups and clinical practices in Illinois, Indiana, Michigan and Ohio. These providers distributed 95 of these Toolkits to informal caregivers between August and October 2018.
Participating caregivers were then surveyed three months after receiving the Toolkit on the usefulness of the Toolkit in carrying out their caregiving responsibilities. Eight caregivers also participated in one of two focus groups at the Living Better Together Conference on November 15th, 2018 to provide more in-depth feedback about the Toolkit. Finally, six providers who distributed the Toolkit participated in key informant interviews between January and February 2019 to give feedback about the Toolkit’s usefulness to informal caregivers and where the Toolkit fit into the flow of COPD care and management.
Initial findings show that the Toolkit is meeting a need for caregivers
Even though most of the participating caregivers had at least one year of caregiving experience, a majority of them found the information provided in the Toolkit to be relevant to their caregiving duties, highlighting a need for this tool as a supportive resource.
In addition to aiding in caregiving duties, results show that the Toolkit helped caregivers take time to care for themselves. Participants in the study reported that the section on self-care in the Toolkit helped them gain perspective on their role and sacrifices they have made as caregivers, as well as helped them feel more comfortable taking time to focus on their own emotional and physical health.
Up next: distributing the Toolkit to a larger audience
Based on feedback from caregivers and providers, Toolkit distribution will focus on caregivers of newly diagnosed COPD patients and those of patients recently hospitalized due to a COPD exacerbation. RHA also plans to create a user’s guide to accompany Toolkit distribution as a way to help informal caregivers integrate this tool into ongoing caregiving activities. Finally, RHA also plans to develop a training or webinar for health care providers to provide guidance on how to introduce the Toolkit to patients and their informal caregivers on how to use the Toolkit effectively.
For a more comprehensive overview of results from this pilot study, please refer to the COPD Caregiver Toolkit Full Report.