In a series of six discussion groups with diverse family caregivers in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. They also offered valuable feedback and guidance on how video instruction and other training materials could be improved to help them perform their caregiving tasks with less anxiety and stress.
AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, “It All Falls on Me”: Family Caregiver Perspectives on Medication Management, Wound Care, and Video Instruction, summarizes key themes from the discussions and suggests a list of “do's and don'ts” for video instruction.
“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF's Families and Health Care Project and a co-author of the report.
This deep dive into caregiver perspectives is an outgrowth of a joint 2012 UHF/AARP Public Policy Institute report, Home Alone: Family Caregivers Providing Complex Chronic Care. That report found that 46 percent of family caregivers across the country were performing medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions—and that these caregivers felt they were not adequately prepared by the health care system to perform these tasks. As a result they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.
The new report is an important resource for AARP's broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute's website and United Hospital Fund's Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.
In preparation for the discussion groups, UHF staff reviewed literature on video instruction for patients and caregivers and selected several currently available videos on medication management and wound care to show to caregivers to stimulate discussion and elicit feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.
Several major themes consistently emerged from the discussion groups, which included 20 women and 13 men of different backgrounds and ages. Among those observations:
- Caregivers felt that the videos they were shown failed to address the emotional aspect of caregiving. Many felt scared and anxious about performing specific medical and nursing procedures for their spouse or parent.
- Family caregivers were resourceful out of necessity and learned how to solve problems no one had warned them about. They sought alternative sources of information and tested different approaches on their own, such as trying different ways of organizing and administering medications.
- Managing medications is a common problem. Caregivers reported a lack of information about medication side effects and dosing regimens, how to deal with family members' resistance to taking medications, and confusion about similar-looking pills.
- Caregivers who were responsible for wound care felt particularly unprepared. After watching one of the sample videos on wound care, one caregiver, whose parent had undergone amputations, said, “I could just cry, knowing that this information was available to me and nobody told me about it.”
- Many issues raised by the caregivers cut across cultural groups. Chinese caregivers, however, did report using some traditional medicines and practices as well as those drugs prescribed by doctors, who generally did not ask about traditional alternatives.
- Many caregivers reported a lack of coordination among health care professionals. Only the caregivers for family members in advanced stages of illness reported that the care was provided by a team.
“It All Falls on Me” also lays out 20 “Do's for Video Development” and seven “Don'ts for Video Development.” These include guidance such as:
- Do respect the family caregiver's close relationship with the person needing care by acknowledging the emotional impact of caregiving.
- Do incorporate principles of successful teaching and learning of psychomotor or technical skills, which usually require both hands-on observation and feedback.
- Do show a family caregiver doing the task, with an instructor providing supervision, and use a home care setting rather than a medical setting.
- Do use bullets and graphics selectively to reinforce the spoken presentation.
- Don't oversimplify complex tasks.
- Don't try to be funny or overly enthusiastic and cheerful.
- Don't clutter the video with extraneous information or visuals.
The report also contains the moderator's discussion guide, recruitment fact sheet, and an annotated bibliography.
About the United Hospital Fund: United Hospital Fund works to build a more effective health care system for every New Yorker. An independent, nonprofit organization, we analyze public policy to inform decision-makers, find common ground among diverse stakeholders, and develop and support innovative programs that improve the quality, accessibility, affordability, and experience of patient care. UHF's longtime focus on family caregiving includes landmark reports, initiatives targeting health care providers, and a website (www.nextstepincare.org) with free guides to help family caregivers and health care providers work together more effectively. Learn more at www.uhfnyc.org.
AARP is a nonprofit, nonpartisan organization, with a membership of nearly 38 million that helps people turn their goals and dreams into 'Real Possibilities' by changing the way America defines aging. With staffed offices in all 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands, AARP works to strengthen communities and promote the issues that matter most to families such as healthcare security, financial security and personal fulfillment. AARP also advocates for individuals in the marketplace by selecting products and services of high quality and value to carry the AARP name. As a trusted source for news and information, AARP produces the world's largest circulation magazine, AARP The Magazine and AARP Bulletin. AARP does not endorse candidates for public office or make contributions to political campaigns or candidates. To learn more, visit www.aarp.org or follow @aarp and our CEO @JoAnn_Jenkins on Twitter.