Development of competencies to strengthen support for caregivers and enhance their capacity to provide care

ABSTRACT

Nearly 53 million family caregivers in the United States provide care to older adults, performing tasks ranging from meal preparation and grocery shopping, to wound care and medication management. While caregivers are critical to the health care system, they are not adequately supported to serve in this role. Successfully integrating family caregivers into the health care team and supporting their health and well-being is a public health priority and should be a focus for clinical education programs. To address this gap, the Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis developed the Interprofessional Family Caregiving Competencies as a framework to guide the development of curricula to enhance health care providers’ skills, knowledge, and abilities in family caregiving. Twenty-one competencies are categorized within the following four domains: the nature of family caregiving; family caregiving identification and assessment; providing family-centered care; and the context of family caregiving.

KEYWORDS:

• Family caregiving
• competencies
• clinical education
• clinical competence

Introduction

In 2030, when the last of the baby boomers turn 65, 73.1 million people, or 20% of the United States population, will have reached retirement age. By 2060, that number is expected to reach 94.7 million, or 25% of the population (US Census Bureau, 2018; Vespa, Armstrong, & Medina, 2018). While many people age without disability, the vast majority of people who require family caregivers are older adults, aged 50+ (RAISE final report). The United States is facing a significant care gap for its aging population. The number of working-age adults – those most likely to become family caregivers (Reinhard et al., 2019) – is projected to fall, from 3.5 for every individual over the age of 64 in 2020 to 2.5 in 2060 (Vespa et al., 2018). And the caregiver support ratio (the number of potential caregivers between 45 and 64 for each person 80 and over) is expected to decline sharply: from 7 to 1 in 2010 to less than 3 to 1 in 2050 (Redfoot, Feinberg, & Houser, 2013). These changes in demographics have created an urgent situation for healthcare in this country and around the world.

According to Families Caring for an Aging America, a 2016 report by the National Academies of Sciences, many of the tasks performed by family caregivers require “problem solving, decision making, communication with others … and constant vigilance over the care recipient’s well-being” (Gitlin & Wolff, 2012; Schulz & Eden, 2016, p. 82). This unpaid care – provided by nearly 53 million family caregivers (AARP and National Alliance for Caregiving, 2020) who perform tasks ranging from meal preparation to wound care (Guengerich, 2018) – is a critical component of the health care system: in 2013 its economic value was estimated at $470 billion annually (Reinhard, Friss Feinberg, Choula, & Houser, 2015). The care that family caregivers provide comes at considerable cost to them, resulting in compromised physical, mental and financial health (AARP and National Alliance for Caregiving, 2020).

Despite their essential role, family caregivers report a lack of adequate support, with 84% expressing a need for more education (National Alliance for Caregiving and AARP Public Policy Institute, 2015). While they often receive some initial instruction during two commonly stressful junctures – at the time of initial diagnosis or at discharge from the hospital – many subsequently search for additional instruction on the web or by turning to friends (Anderson, Hundt, Dean, Keim-Malpass, & Lopez, 2016; Kim, Powell, & Bhuyan, 2017).

Health care professionals can play a vital role in supporting families in the care of older persons. Integrating family caregivers into the health care system and offering them the training and support has the potential to improve their capacity to care and promote their health and well-being (Whitlatch & Orsulic-Jeras, 2018). Attention to caregiver needs is a public health priority and should be a focus for clinical education programs.

Competency development

In 2018, two faculty members from the Family Caregiving Institute identified initial concepts and competencies related to aging and family-centered care were selected through an examination of peer-reviewed and gray literature. A total of 20 competencies were developed within four domains to reflect the fundamental concepts of family caregiving, caregiver identification and assessment, collaborative approaches in support of family caregivers, and the support of caregivers in the context of varied patient populations, settings, and care teams.

Using the online survey software Qualtrics (Qualtrics, Provo, UT), 52 professionals with expertise in aging, caregiving, clinical education, working in clinical practice, community-based or academic settings were invited to review the 20 competencies. Twenty-three respondents from the field of nursing completed the full survey and provided feedback on domains (knowledge categories), definitions and individual competencies. Respondents could recommend concepts or competencies that they believed were missing.

Two faculty members and a doctoral student from UC Davis reviewed the results, incorporated suggested revisions, and created subsequent drafts. These were in turn reviewed for face validity by three additional faculty members with expertise in caregiving, clinical education, and research, as well as by curriculum experts from the National League for Nursing. After the completion of this work, several recent publications (e.g., Parmer et al, 2021) have defined a broader role for family caregivers and emphasized the importance of caregiver health and well-being. Our competency development work was not able to take these into account, though they share similarities.

Interprofessional family caregiving competencies

Based on feedback, an additional competency was added, bringing the total number of competencies to 21 within four domains: the nature of family caregiving; family caregiving identification and assessment; providing family-centered care; and the context of family caregiving. The competencies can be downloaded from https://health.ucdavis.edu/family-caregiving/education/caregiving-competencies-and-domains

Domain 1, the nature of family caregiving, focuses on the foundational knowledge needed by health professionals to understand the complexity of family caregiving. This includes a review of major theoretical perspectives of family caregiving; positive and negative consequences of family caregiving on the caregiver, care recipient, family, and society; how the family caregiving relationship, caregiving situation, and trajectory of the illness impact the caregiving situation; and the sociocultural variables (e.g., ethnicity, socioeconomic status) that impact family caregiving.

Domain 2 describes the skills, knowledge, and abilities needed by health professionals to recognize, understand, and assess family caregiving situations. Identifying the family caregiver and collaborating with both the family caregiver and care recipient on establishing goals and priorities is a first step. The health professional must also be able to select and use relevant tools to determine the family caregiver’s preparedness for the role, assess the quality of the caregiving relationship, and recognize the positive and negative consequences of family caregiving, including burden, impact on physical and mental health, social isolation, and financial strain.

Domain 3 focuses on the knowledge, skills, and abilities needed by clinicians to partner with care recipients and caregivers. These include demonstrating the willingness to integrate both the care recipient and family caregiver in the decision making process; incorporating evidence-based interventions that are tailored to the needs and goals of the care recipient and caregiver; identifying support options (e.g., respite, education); demonstrating an understanding of the strain of caregiving and providing caregivers with self-care options; and developing a family caregiving support plan based on the strengths, limitations, and resources of the family and the family caregiver.

Domain 4 concentrates on the context of family caregiving and requires consideration of variables related to the individual, the family, the sociocultural context, the trajectory of illness, and external forces (e.g., health care system and public policy). Health professionals must be able to demonstrate an understanding of the impact of varying illnesses and conditions, as well as the stages of a disease, on caregiving; the effect of the family caregiver, the care recipient, and the health care system on the assessment and management of family caregiving; the influence of unconscious biases on care; and the importance of personalizing assessments and interventions.

Limitations

Results were limited by a small sample within the field of nursing. Future iterations of the competencies should be reviewed by larger multi-disciplinary groups of experts. The competencies also focus on older adults, while caregiving occurs across the lifespan.

Conclusion

The competencies are designed to serve as a foundation that can be refined across clinical professions and within profession based on scope of practice. The competencies have subsequently been incorporated into nursing curricula within multiple universities as well as the National League for Nursing’s Advancing Care Excellence for Caregivers (ACE-C) learning modules (https://ondemand.nln.org/product?catalog=ACE). Currently, workgroups assembled by the National Alliance for Caregiving and a group of nursing educators are exploring how the competencies can be adapted within individual clinical education programs and existing simulations, respectively.

The seminal publication, Families Caring for an Aging America (Schulz & Eden, 2016, p 262) called for strengthening the ability of health care professionals to engage and support family caregivers: “providers should see family caregivers not just as a resource in the treatment or support of a person, but rather as a partner … who may need information, training, care, and support.” In 2020, The US DHHS Health Resources and Services Administration indicated that programs funded through the Geriatrics Workforce Enhancement Program should incorporate support to family caregivers. The RAISE Family Caregiving Advisory Council, established in 2018 to set a national caregiving strategy, released a report to Congress in October 2021 that recommended, in part, strengthening the training programs for clinicians to maximize family engagement, including caregivers as members of the health-care team, incorporating culturally sensitive assessments to identify caregiver needs, and increasing availability of culturally-relevant information and support to caregivers (Raise Family Caregiving Advisory Council, 2021).

To be able to address these national recommendations, the workforce should understand the lived experience of family caregivers and the role they play within the health care team. These competencies are a roadmap for clinical education programs to incorporate learning activities into existing curricula to ensure that our workforce is up to the task of supporting the 53 million Americans providing care at home.

Acknowledgments

Editorial support was provided by Dalia Sofer.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Gordon and Betty Moore Foundation 3968,5968 under Grant #5968.