To better understand family caregivers' experiences and needs related to AT/HM, training, and physical strain, we analyzed results from an online survey conducted by the FCA of family caregivers on the use of AT, which was fielded over six months (Appendix D). A snowball sampling methodology was used to recruit a convenience sample of family caregivers to complete the survey through FCA, ADRCs, and some AAAs. A total of 423 caregivers responded to the survey.
We also obtained information about innovative strategies and recommendations for addressing caregiver physical strain through a combination of webinars/teleconferences, site visits, and telephone interviews with technical experts, family caregivers, and NFCSP administrators. In addition, staff from ASPE and AoA, within the U.S. Department of Health and Human Services, along with two consultants with expertise in the design and use of AT/HM, provided input throughout the project.
First, we recruited a TEP and a CAP. TEP participants included experts in the design and use of AT/HM for family caregivers and older adults. CAP participants were individuals with both personal caregiving experience and knowledge of broad family caregiving issues. The study team met with the TEP by teleconference/webinar in January 2011. This was followed by a teleconference/webinar with the CAP in February 2011. These discussions provided opportunity to get input on the draft literature review. We also met with some key experts individually by phone. In December 2011, we convened a joint meeting of the TEP and CAP, which provided opportunity to elicit input from both groups on drafts of the two guides developed through this project and recommendations for the future.
To learn about strategies for accelerating the use of AT/HM to mitigate caregiver strain through the NFCSP network, we conducted site visits to 11 NFCSP programs, in person (Connecticut, Maryland, Pennsylvania, Utah) or by phone (Alabama, California, Hawaii, Illinois, Indiana, Iowa, Wisconsin). The sites represented diverse experiences with AT/HM. They included: sites using advanced/innovative approaches to providing AT/HM to family caregivers; sites that were interested in the area, but not sure how to launch an initiative; and sites with no activity in AT/HM. The selected programs also represented diverse geographic regions. We interviewed NFCSP administrators, managers, CMs, and participants at program offices and in the homes of older adults and family caregivers to gain a deeper understanding of caregiver needs related to physical strain and effective solutions. The visits took place between June and November 2011. Information gained from the site visits was used to develop the NFCSP strategy guide. Site visit participants were asked to review a draft of this guide and provide feedback through an online tool.
After meeting with the joint TEP/CAP panel and incorporating their input on draft documents, the next step was to convene a panel of 11 NFCSP program representatives, which took place in October 2011. Participants provided input on suggested strategies and resources for NFCSPs emerging from the site visits, as well as recommendations for additional policy and research activity to accelerate the use of AT/HM to reduce caregiver physical strain. The NFCSP panel was asked to review the guides developed through this project and to provide feedback through an online tool, similar to the one used to elicit feedback from site visit participants.6