Visiting Expert Shares Family Caregiver Research

Nursing and healthcare professionals, faculty and students gathered at the Pacific Club on Feb. 25, 2014, to hear Susan Reinhard, PhD, RN, AARP senior vice president and director of the AARP Public Policy Institute, speak about “Complex Chronic Care and Family Caregivers.” Her talk detailed groundbreaking research on the complexity of medical tasks performed by family caregivers.

Challenging Common Perceptions

The findings of this study challenge the common perception that family caregiving is limited to personal care and household chores. Dr. Reinhard shared high-level findings on the dramatically expanding role of family caregivers, who are routinely performing medical and nursing tasks customarily provided by healthcare professionals.

The nation-wide survey titled “Home Alone: Family Caregivers Providing Complex Chronic Care,” gathered information from 1,677 family caregivers to determine what medical and nursing tasks they actually perform, and their comfort and training levels in executing these tasks. The full survey was conducted by Dr. Reinhard and; Carol Levine, MA, director of the Families and Health Care Project, United Hospital Fund; and Sarah Samis, MPA and senior health policy analyst, United Hospital Fund.

Study’s Findings

• Of the family caregivers surveyed, 46 percent performed medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions.
• Many family caregivers managed a variety of medications, and learned how to manage these medications largely on their own.
• Caregivers found wound care particularly challenging and many wanted more training in this area.
• Family caregivers reported both positive and negative effects on their own quality of life. Positive effects included satisfaction in making an important family contribution in preventing nursing home placement, and negative included less time for their own needs, and stress and worry in making a mistake while preforming the various medical/nursing tasks.

Reinhard said that in Hawai‘i, there is an especially high number of the elderly population who are being cared for by their family members.

Major recommendations from the study included a reassessment of the way healthcare providers and professionals interact with family caregivers in daily practice and increased support for caregivers’ efforts by providing training and referrals to existing resources.  It also recommended that policymakers should proactively consider family caregivers in developing new models of care and in funding programs.

The UHM Nursing Dean’s Lecture is made possible by the generosity of Charlie and Preston Fox, who established the Starlit Walk Present: Endowment for Advancement of Nursing, a fund to bring nationally renowned speakers to Hawaiʻi to educate students, alumni, and nursing and other healthcare professionals.