NEW Guide for Patient Advocacy Groups to Support Diverse Family Caregivers
The National Alliance for Caregiving, with Support from AstraZeneca, Releases a Guide on How Patient Advocacy Groups Can Support Diverse Family Caregivers with Culturally Responsive Resources
Washington, D.C.—February 28, 2023—The National Alliance for Caregiving (NAC) has released a new publication to assist patient advocacy groups in their efforts to support diverse family caregivers. Through research with professional patient advocacy group representatives and diverse family caregivers in the condition areas of lung cancer, heart disease, blood cancer, and lupus, Supporting Diverse Family Caregivers: A Guide for Patient Advocacy Groups addresses the impact of culture and identity on the way that family caregivers provide care, and introduces ways in which patient advocacy groups can support their caregiving experience through culturally responsive resources and supports.
“Caregiving impacts us all, but it doesn’t impact us all equally,” said Jason Resendez, President and CEO of the National Alliance for Caregiving. “Supporting Diverse Family Caregivers was created with the goal of assisting patient advocacy groups in reaching and providing culturally responsive supports and resources to diverse family caregivers. Tools like this can help the field build equity with and for family caregivers.”
The number of diverse family caregivers in the United States is growing yearly, and their aggregate number will soon surpass non-Hispanic white, non-LGBTQ+ caregivers. According to Caregiving in the U.S. 2020, of the 53 million family caregivers in the United States, 17% identify as Hispanic/Latino, 14% identify as African American, 8% identify as LGBTQ+, and 5% identify as Asian American or Pacific Islander. The Centers for Disease Control and Prevention identifies one in every four American Indian or Alaska Native adults as family caregivers.
“With the growing number of diverse caregivers and the disproportionate health disparities faced by families in underserved communities, now is the time to deliver supportive, inclusive resources that drive health equity,” said Christie Bloomquist, Vice President of US Corporate Affairs and Government Affairs at AstraZenca and President of the AstraZeneca Foundation. “AstraZeneca is proud to support patient advocacy groups providing culturally relevant resources that have the power to advance equitable care and transform patient outcomes. We are immensely thankful to NAC for bringing awareness to this critical topic and collaborating with caregivers and patient advocacy groups to publish this guide.”
“Family caregivers, including families of choice, are the cornerstone of support for underserved communities,” said Sherrill Wayland, Senior Director of Special Initiatives and Partnerships at SAGE. “SAGE is grateful for this report as it uplifts the experiences and unique needs of diverse family caregivers, including LGBTQ+ family caregivers.”
Among many, the topics addressed in this guide include:
- Findings from diverse family caregivers on how culture affects their caregiving experience
- Statistics and research on diverse family caregivers from the Diverse Elders Coalition
- Information on how patient advocacy groups can help advocate for the caregiver
- Tips on empowering caregivers through culturally responsive support
- Information and stories from diverse family caregivers themselves on the resources they’d like to see from patient advocacy groups
Through stakeholder interviews and consistent consultation over 14 months, the National Alliance for Caregiving engaged professionals in patient advocacy, family caregivers, and subject matter experts in family caregiving in the development of this guide. In combination, these insights deepened our understanding of how patient advocacy groups can help bridge the inequities that exist in care supports and services. A full list of the advisory committee and expert committee of patient advocacy organizations that were engaged in the creation of the guide can be found on the guide’s acknowledgments page. We are grateful to our funder AstraZeneca for their support, to the advisory committee members and expert committee of patient advocacy organizations who leant us their expertise, and to the family caregivers whose lived experience helped to guide our research and work.
Patient advocacy groups and those who are involved in the family caregiver space may visit the guide here in order to read our findings and to learn more from diverse family caregivers.
About the National Alliance for Caregiving:
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on building health, wealth, and equity for family caregivers through research, innovation, and advocacy. We envision a society that values, supports, and empowers family caregivers to thrive at home, work, and life. Learn more at http://www.caregiving.org.