The COPD Caregiver’s Toolkit: A Novel Resource for Supporting COPD Caregivers, Educating and Empowering Families Affected by COPD, and Improving the Quality of COPD Care Delivery

  • Yount, Susan (PD/PI)

Project: Research project

Project Details


RHA will evaluate caregivers’ acceptance of the COPD Caregiver’s Toolkit and their perceptions of the degree to which the Toolkit helped in carrying out their responsibilities. This will be accomplished through a collaboration with patient-reported outcomes measurement experts from the Department of Medical Social Sciences at Northwestern University to develop a focus group guide, facilitate two focus groups with informal caregivers (phase I), and develop a survey to be administered to caregivers participating (phase II). Evaluation of both phases will focus on Toolkit acceptability and perceptions of usefulness.

Phase 1: Following the Toolkit distribution to informal caregivers affiliated with select Illinois pulmonary rehabilitation groups, MSS investigators will conduct two focus groups (8-10 caregivers in each) during RHA’s 15th annual Living Better Together COPD Conference in Chicago on November 15, 2018. The focus group guide will be designed to elicit caregiver impressions regarding the acceptability and feasibility of the Toolkit, including caregiver perceptions of usefulness, perceived impact on caregiving responsibilities, examples of Toolkit use and perceived benefit, and recommendations for improving the Toolkit. Audio recordings of the focus group session will be transcribed and de-identified prior to qualitative analysis. Focus group participants will receive a $25 gift card stipend.

Phase 2: Following the Toolkit distribution to informal caregivers affiliated with select Midwest hospitals, skilled nursing facilities, and health care providers in Illinois, Indiana, Michigan, Ohio, and Wisconsin, RHA staff will provide participant contact information to Northwestern investigators for purposes of administering a survey. The survey will seek perceptions of the Toolkit, both specifically about each section as well as generally about the overall Toolkit. The survey will be distributed electronically (via REDCap) or by mail beginning 90 days after Toolkit distribution.

Data Analysis
Following Phase 1 and Phase 2 data collection, Northwestern investigators will analyze the qualitative and quantitative data to inform RHA’s broader Toolkit dissemination efforts and recommended improvements to the Toolkit. De-identified focus group transcripts and co-moderator field notes will be analyzed qualitatively and summarized (Phase 1), as will key informant interviews (Phase 2; conducted by RHA staff), while a quantitative analysis will be carried out on the survey (Phase 2). MSS investigators will provide RHA staff with their findings from the survey and focus groups, and RHA will draft and submit an evaluation report with these findings.
Effective start/end date7/16/184/5/19


  • Respiratory Health Association of Metropolitan Chicago (HHSN268201400042U //#PMPS-NHLB-0504)
  • National Heart, Lung, and Blood Institute (HHSN268201400042U //#PMPS-NHLB-0504)


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