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Guest Editorial

Caring for a Person Living with Pain

Young, Heather M. PhD, RN, FAAN; Choula, Rita B. MA; Reinhard, Susan C. PhD, RN, FAAN

Author Information
AJN, American Journal of Nursing: September 2022 - Volume 122 - Issue 9 - p 7
doi: 10.1097/01.NAJ.0000874020.74246.e6
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Abstract

This month, we are pleased to partner with AJN in presenting the first of five new articles in our series Supporting Family Caregivers: No Longer Home Alone. As we begin with this first installment, we would like to celebrate all those caregivers who provide vital assistance to family and friends. We also recognize that many nurses are also family caregivers and are never truly off duty. As the most invisible part of our health care workforce, family caregivers come from all walks of life, reflect all ages and all racial and ethnic groups, and experience both the joys and challenges of the important role they play in contributing to the well-being of older adults and persons with disability.

Caregiving is rightfully gaining national attention. The RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregiving Advisory Council was established in 2019 to provide recommendations to Congress and to federal and state agencies for improving support and resources for family caregivers. It identified five goals: improve caregiver well-being by increasing awareness of family caregiving, recognize caregivers as key partners with health care providers, increase caregiver access to services and supports, improve financial and workplace protections for caregivers, and improve research and data tracking on caregivers.

As nurses, we can address the first three goals in our practice every day. Awareness starts with each of us realizing and appreciating family caregivers and being committed to learning about their situations and challenges. We play a key role in identifying caregiver needs and potential resources and solutions, including providing caregivers with education and guidance. Using an equity lens, it is critical that we recognize and respect the diverse backgrounds and experiences of family caregivers and ensure culturally and linguistically appropriate approaches to support them. The Diverse Elders Coalition has developed toolkits to help in implementing strategies to promote health equity for all caregivers (see www.diverseelders.org/wp-content/uploads/2021/03/DEC-Toolkit-Final-R2.pdf).

The second RAISE goal aligns with the Caregiver Advise, Record, Enable (CARE) Act, which has been adopted in 45 states and territories, ensuring that health care systems identify family caregivers, document their role in the electronic health record, and engage them during hospitalization and in preparation for discharge. It starts with asking who is involved in supporting the older adult or person with disability, and learning more about what they do, their perspectives on the plan of care, and any gaps that may exist in knowledge or resources.

Over the past five years, the Home Alone Alliance, part of the AARP Public Policy Institute in collaboration with the UC Davis Betty Irene Moore School of Nursing Family Caregiving Institute, has produced over 45 videos addressing issues that caregivers prioritized in our national surveys. AJN is a key partner in the development of these videos and has published more than 20 articles containing information to enable their use in practice (see https://journals.lww.com/ajnonline/pages/collectiondetails.aspx?TopicalCollectionId=38).

These new articles in the series will focus on how nurses can support family caregivers who care for a person living with pain and will be accompanied by six new videos for family caregivers. Pain management can be stressful for family caregivers, in both managing a complex condition and living with the emotional effects of pain. Pain management is also an area of significant health disparities, where persons from underrepresented groups often experience racism and a lack of understanding of their pain experience, receive unequal treatment or undertreatment of their pain, and are given fewer resources to manage the complexity of their pain. The first article, which appears in this issue, addresses the context of pain and how it manifests and affects the family caregiver.

We hope you find these resources useful to you and in your practice. We encourage you to be proactive in engaging family caregivers and including them as full members of the care team. Most of all, we appreciate your support of the friends and family who make such a difference in our communities.

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