Journal of Gerontological Nursing

Feature Article 

Formal Caregiver Burden in Nursing Homes: A Concept Analysis

Rachel Kunkle, MHA, BSN, RN-BC, GRN; Claudia Chaperon, PhD, APRN, GNP-BC; Kathleen M. Hanna, PhD, RN, FAAN

Abstract

Caregiver burden is a phrase often used interchangeably with the concepts of stress, strain, and burnout. Distinct differences may be relevant in formal caregiver burden; however, previous concept analyses have not addressed formal caregiver burden in nursing homes, which would be useful as a foundation for theory development and empirical testing. In the current study, based on Walker and Avant's concept analysis guidelines, articles were reviewed to identify the attributes, antecedents, and consequences of formal caregiver burden. Formal caregiver burden was defined as the demands of caring for dependent older adults with a level of competency and responsibility within the context of perceived stress. Antecedents were associated with the organization and environment, such as regulatory restraints, whereas consequences were associated with changes in physical and mental health status. The conceptualization of formal caregiver burden may lead to the development of psychometric instruments and interventions for the well-being of direct care staff in multiple care settings for older adults. [Journal of Gerontological Nursing, 46(9), 19–24.]

Abstract

Caregiver burden is a phrase often used interchangeably with the concepts of stress, strain, and burnout. Distinct differences may be relevant in formal caregiver burden; however, previous concept analyses have not addressed formal caregiver burden in nursing homes, which would be useful as a foundation for theory development and empirical testing. In the current study, based on Walker and Avant's concept analysis guidelines, articles were reviewed to identify the attributes, antecedents, and consequences of formal caregiver burden. Formal caregiver burden was defined as the demands of caring for dependent older adults with a level of competency and responsibility within the context of perceived stress. Antecedents were associated with the organization and environment, such as regulatory restraints, whereas consequences were associated with changes in physical and mental health status. The conceptualization of formal caregiver burden may lead to the development of psychometric instruments and interventions for the well-being of direct care staff in multiple care settings for older adults. [Journal of Gerontological Nursing, 46(9), 19–24.]

Caregiver burden is a concept predominantly associated with family caregivers, with little previous research defining burden among formal caregivers who provide care to older adults in nursing homes. Subsequently, there is lack of understanding of what formal caregiver burden truly is and what it is not. Formal caregiver burden needs to be defined so that the consistency of phenomena can be identified and measured in nursing science. A conceptual definition that provides guidance for an operational definition will allow for the advancement in the science related to formal caregivers, resident-centered care, and nursing care of older adults.

Formal caregivers experience burden as they provide care to older adults residing in nursing homes. Formal caregivers experience stress, strain, and burnout, and these terms are often used to describe the concept of burden. The concepts of stress, strain, and burnout are often used interchangeably in nursing literature to describe negative consequences of caregiving upon the caregiver (Chappell & Novak, 1992; Kim et al., 2012; Morgan et al., 2002). However, there is lack of a common definition of burden among the population of formal caregivers who experience burden. Formal caregivers are direct nursing care staff who provide care to older adults within nursing homes, and can be RNs, licensed practical nurses (LPNs), medication aides, and nursing assistants; all of whom fulfill various care responsibilities. Due to lack of delineation of formal caregiver burden, there is no definitive theory that can be associated with this concept.

Concepts are the basic elements of theory development. Concepts are essential to the generation of knowledge and must be plainly defined and distinctly identifiable. Concept analyses of caregiver burden have been published, but none have been found to address aspects of the formal caregiver in the nursing care of older adults. The purpose of the current article is to define formal caregiver burden within the nursing home setting. It is surmised that this analysis will be useful as a foundation for assessing formal caregiver burden and the development of such knowledge. Development of a succinct definition will diminish conceptual confusion in nursing literature and advance theory development. Caregiver burden is a concept that has been defined in the scope of family caregiving, but distinct differences may be relevant in the presentation of caregiver burden among formal caregivers.

Method

Concept analysis is used to develop consistent ideas for knowledge generation and dissemination. The current concept analysis will lead to theory generation and practice implications. Concept analysis aids researchers in defining a term, clear understanding, concept measurement, and theory development. Defining a concept is not a linear process, but a dynamic process that continues to expand with knowledge generation. Walker and Avant (2019) proposed a simplified process guideline for concept analysis. The following concept analysis was completed using this guideline (Walker & Avant, 2019). Model and contrary cases were delineated.

Literature Search

To obtain a literature review of the concept, a search strategy was created using the MeSH terms caregiver burden, psychological stress, stress, nursing assistants, nurses, nursing home personnel, nursing homes, skilled nursing facilities, caregivers, elder care, and long-term care. Databases searched included CINAHL, PsycINFO, PubMed, and Embase. Inclusion criteria were: articles written in English, Western culture settings, care provided in the nursing home setting only, and published between 1979 and August 2019. These dates were explicitly identified as a paradigm shift in care, which began in the United States in the 1980s. Studies in which the focus was informal/family caregivers or administration/ancillary nursing home personnel, sole outcomes were job satisfaction or employee well-being, organizational quality improvement/policy development/quality assurance initiatives, and did not pertain to older adults were excluded. Articles used for this concept analysis aligned with the purpose. Articles were assessed for the stated or implied definition of formal caregiver burden. From these descriptions, the defining attributes, antecedents, and consequences were discerned.

Results

Formal caregiver burden is multidimensional, but to date, it has been interchanged with the concepts of stress, strain, and burnout. Burnout is a condition that was accepted by the World Health Organization (2019) to define the effects of chronic distress in the workplace that is ill-managed. Burnout is a clinical mental health syndrome that has three components: exhaustion, cynicism, and reduced efficiency (Juthberg et al., 2008; Morgan et al., 2002; Yeatts et al., 2010). Burnout is the result of an unresolved negative burden. Burnout is confused with burden; however, it is not the same as burden. It is included in the current concept analysis as an unresolved negative consequence of formal caregiver burden.

Defining Attributes

Defining the attributes of a concept is the essence of concept analysis and provides a clear perspective. Attributes show the characteristics of formal caregiver burden to provide insight. In the context of nursing care of older adults, the attributes of formal caregiver burden were identified as (a) perceived stress of the caregiver, (b) caring for another, (c) dependency by the older adult, (d) responsibility for another, and (e) competence.

Perceived Stress of the Caregiver. Stress is positive or negative; eustress or distress (Suedfeld, 1997). Eustress and distress are part of the multi-factorial dimensions of formal caregiver burden. The perception of the amount of stress experienced by the formal caregiver becomes an attribute of formal caregiver burden. Stress is relative to the formal caregiver and encompasses their past life experiences, current life circumstances, as well as role strains as they fulfill outside expectations based on their various life roles (Pearlin et al., 1990; Zarit, 2008).

Caring for Another. Caring is essential to the core of nursing (Watson, 2009). A relationship is a significant component of caring (Andersen & Spiers, 2016), the intertwined lives of the formal caregiver and older adult, demonstrated in close interaction (Berg et al., 1998; Loos & Bowd, 1997). Fundamental to the caring relationship is treating the older adult with dignity and respect (Boykin & Windland-Brown, 1995; Hansebo & Kihlgren, 2001). Caring involves protection, humanity (Kusmal & Waldrop, 2015), sympathy, tolerance, understanding (Tellis-Nayak & Tellis-Nayak, 1989), and authenticity (Boykin & Winland-Brown, 1995). Formal caregivers provide resident-centered care, which requires intricate knowledge of the older adult, their values, life history, life choices, and interests, as well as treating them as an individual with worth (Kolanowski et al., 2015).

Dependency by the Older Adult. Dependency, an attribute of formal caregiver burden, is the reliance of the older adult on the formal caregiver. Older adults in nursing homes may have multiple chronic conditions (Centers for Disease Control and Prevention, 2016; Chamberlain et al., 2017). Deteriorating physical and cognitive function may lead to dependency and a decline in the ability to perform activities of daily living (ADL), a significant component to the dependency of older adults (Kim et al., 2012; McFall & Miller, 1992). Formal caregivers assist with ADL routinely (Gilley et al., 2004; Kusmal & Waldrop, 2015; Smith et al., 2004). A compounding factor of dependency by the older adult is the rapid decline of general health and increased acuity of the older adult. Formal caregivers are responsible for managing the increased acuity and dependency of the older adult (Jones et al., 2002).

Responsibility for Providing Direct Nursing Care. Responsibility insinuates a duty, an ethical obligation (Merriam-Webster, n.d.b.). Responsibility is essential as the individual assumes a duty when acquiring the role of formal caregiver. Formal caregivers are tasked with the enormous responsibility of providing care to the older adult. The older adult may, at times, be unable to understand the importance of required care activities due to cognitive impairment and other factors, and will resist in a physical and verbal manner (Geiger-Brown et al., 2004; Hansebo & Kihlgren, 2001; Ostaszkiewicz et al., 2015; Tellis-Nayak & Tellis-Nayak, 1989). Formal caregivers prioritize the needs of older adults, balancing care needs and time constraints while ensuring that all immediate needs are addressed. This is often a source of conflict for the formal caregiver.

Degree of Competence. Competence is the capability to demonstrate necessary knowledge, judgment, and skill (Merriam-Webster, n.d.a.). Formal caregivers practice the knowledge obtained through education and training within their scope of practice. This knowledge guarantees the competence of the individual to perform caregiving tasks. Competence is vital for formal caregivers because the care of older adults is complicated. Formal caregivers must display competency to respond to the physical, psychological, and social needs of older adults (Kolanowski et al., 2017).

Competence of formal caregivers requires the ability to incorporate knowledge of the older adult into the care activities and adjust to their intricate needs. Routine interactions often differ throughout the day (Boykin & Winland-Brown, 1995). Interpretation of routine interactions requires specific knowledge of the chronic conditions and their effect on the individual, the multifaceted needs, and the intuition based on the experience of the formal caregiver (Häggström et al., 2010). Competence requires intimate knowledge of medical and psychiatric history; functional abilities and limitations; pain management; and individual, cultural, and religious preferences of every older adult (Kolanowski et al., 2017).

Antecedents

Antecedents are the events that must occur prior to the concept (Walker & Avant, 2019). There are several antecedents to formal caregiver burden in the nursing care of older adults, such as accumulation of older adults, number of hours, case mix, time and place of caregiving, role demands, and activities required. Accumulation of older adults refers to the total number of older adults residing within the nursing home (Miyamoto et al., 2010); number of hours is the time needed to complete personal care activities (McFall & Miller, 1992); and the case mix of older adults refers to the diagnoses, treatments, medication needs, rehabilitation status, and ADL support required by older adults (Morgan et al., 2002). Time and place of caregiving refers to the health care environment and organization in which care is provided, in this case, the nursing home (Hurtado et al., 2012), and the constraints of the two forces (i.e., regulations and organizational policies versus resident care needs and requests) (Juthberg et al., 2007). Role demands are the number of care tasks that are required and dictated by regulation, older adult needs, and organizational culture (Juthberg et al., 2007; Kolanowski et al., 2015). Restraints associated with caregiving tasks include time frames of medication administration and personal care as well as inadequate staffing (Kusmal & Waldrop, 2015).

Consequences

Consequences are conditions that occur because of the concept (Walker & Avant, 2019). Formal caregiver burden generates positive and negative consequences. Consequences of formal caregiver burden include changes in physical, psychological, emotional, and functional health (Kim et al., 2012); quality of life of the caregiver; and quality of resident-centered care (Gandoy-Crego et al., 2009). Current literature has defined mostly negative consequences as depression/depressive symptoms (Kim et al., 2012), anxiety and guilt (Stolley et al., 2002), decreased job satisfaction (Ostaszkiewicz, et al., 2015), and turnover (Morgan et al., 2002). Unresolved negative formal caregiver burden can result in burnout (Morgan et al., 2002; Yeatts et al., 2010). Positive consequences of formal caregiver burden are believed to exist as eustress, to where burden can result in positive outcomes; however, little literature is available regarding these assumed positive consequences (Simmons & Nelson, 2001).

Empirical Referents

After a thorough review of the literature for the current concept analysis, to the best of our knowledge, there was no empirical referent that embodied all attributes and consequences associated with formal caregiver burden as defined in this concept analysis.

Application of Attributes in Hypothetical Cases

Formal caregiver burden is defined as the perceived stress of caring for dependent older adults with a level of competency and professional responsibility. The following model case and contrary case will demonstrate the attributes of formal caregiver burden.

Model Case

A model case validates the concept using the attributes. It is an example of what the concept is, leaving the reader with a clear understanding of the implied meaning of the concept. Model cases may be fictitious examples of the concept to ease understanding (Walker & Avant, 2019).

Daisy is a nursing assistant, working on the long-term care unit, caring for 25 residents. Her day starts at 6:00 a.m. Daisy knows the residents well, as she has worked there for 5 years. She is responsible for getting residents up and to breakfast by 8:00 a.m. Morning cares involve dressing, oral care, toileting, and grooming while ensuring safety for all residents. In between care, Daisy is responsible for responding to call lights.

Daisy is running behind, as some residents are experiencing behavioral symptoms related to morning care activities. She wishes she could let them sleep in, but she is responsible for assisting residents in the dining room, and she cannot leave them unattended. Everyone is flustered due to the late-running schedule. She sits down to assist her assigned residents with their meal while balancing the needs of other residents in the dining room. She understands that meeting resident care needs and wishes are an essential aspect of the care she provides.

After breakfast, residents require toileting assistance every 2 hours, help getting ready for appointments and outings, getting to and from activities, and some request to lay down for a nap. Accomplishing all these tasks is hard, as she must attend to all residents. She is balancing the call lights and resident needs, but this is difficult because she cannot leave residents unsafe.

The attribute of responsibility is evident throughout Daisy's day. The attribute of perceived stress is evident in Daisy's reactions to delays in resident care. The attribute of competence is evident in how Daisy responds to the residents' needs and wishes. The attribute of caring is evident in the empathy Daisy possesses. The attribute of dependency of the older adult is evident in the care needs of the residents to whom Daisy is assigned.

Contrary Case

A contrary case is everything the concept is not. It is an embodiment of the exact opposite of the concept to allow for a clearer understanding of what the concept truly is. The contrary case is void of all attributes of the concept (Walker & Avant, 2019).

Sharon is a nursing assistant assigned to the long-term care unit. She starts her shift at 6:00 a.m. Sharon starts every day by making sure the coffee is ready for the day. She waits in the breakroom to make sure that she can get the first cup of coffee, nice and hot. She brings the coffee from home because the coffee from the kitchen is not gourmet. She figures that this is the most important part of the dayshift routine because it benefits everyone. She prefers to be assigned tasks such as making the resident beds, straightening resident rooms, and passing out fresh ice water and snacks because they do not directly involve the residents. She always keeps her phone on her to make sure that she can get the latest notifications of what is happening in the outside world and does not miss a phone call. She also takes frequent bathroom breaks. She always makes sure she gets her full 30-minute break, excluding bathroom time, and clocks out promptly at the end of every shift.

Sharon does not display any of the following attributes: perceived stress, competence, responsibility, caring, or dependency by the older adult.

Discussion

The aim of the current article was to propose a definition of formal caregiver burden in the nursing care of older adults. To our knowledge, this is the first time formal caregiver burden in the nursing home setting has been defined and distinguished as a concept. Characteristics of formal caregiver burden include the caring for dependent older adults with responsibility and competence, and a degree of perceived stress. Without one of these elements, the concept is unable to exist and is null in its definition.

Burden has long been associated with negative connotations. The fact that the building blocks of burden are eustress and distress imply that burden can, therefore, be positive or negative. This is a new perspective to the concept of formal caregiver burden, and the idea of eustress' impact on burden is not studied or well understood but is proposed to exist. Th is new perspective opens the door to understanding the impact that formal caregiver burden has on the nursing care of older adults.

The five attributes that are presented in the current concept analysis are discerned from several studies related to caring for older adults. These attributes were identified through the implications of the article related to the care of older adults in the nursing home setting. These attributes are well understood in the nursing profession and easily identifiable by formal caregivers.

Limitations

There are many ways to conduct a concept analysis, leading to limitations that can be discussed in relation to the current concept analysis. The attributes identified in this concept analysis are implied, as the articles included lacked definitive conceptual definitions and therefore required extrapolation of the idea. The idea that concept analysis is a finished product is a misunderstanding of the analysis. This analysis creates the ability to have an open dialogue for the generation of new ideas and further expansion of the concept based on empirical findings. The literature search was tedious and time-consuming due to the lack of definition, interchangeable terms, and the large number of articles. Databases were searched in many ways before reaching the ending conclusion that was presented in this concept analysis. Due to this search limitation, some articles could have been missed or excluded unintentionally, therefore changing the results presented here.

Nursing Implications

Understanding formal caregiver burden in nursing homes will aid in understanding the quality of life of direct caregivers. The demands of caring for numerous older adults by direct caregivers with varied levels of competency and responsibility are going to be an important concern in the future of health care. Formal caregiver burden, with its descriptive attributes, allows direct caregivers and others interested in formal caregivers' burdens to reflect on the attributes and the future of gerontological nursing in nursing homes. Although perceived stress is affected by the impact of the organization and environment, there is hope for a better awareness of the valuation of the experience of these tireless professionals. Understanding formal caregiver burden can make all the difference in nursing homes.

In addition, an important contribution to the concept of formal caregiver burden is the beginning of a “name” for the experience of direct caregivers working in nursing homes. If the direct caregiver is only a cog in the organizational wheel, a tool used to achieve resident outcomes, their professional identity and voice cannot be known. The future of practice and research will lead to improved quality of life for formal caregivers and nursing home residents.

Conclusion

Throughout the current concept analysis, it has been apparent that formal caregiver burden in the nursing care of older adults includes several attributes. Until now, formal caregiver burden has been ill-defined and interchanged with multiple similar concepts that may be components of formal caregiver burden but are not the concept itself. The attributes of formal caregiver burden in the nursing care of older adults include five characteristics that can be applied to multiple care settings for older adults.

This concept analysis is the first step in theory generation and empirical testing, which eventually will have practice implications for nursing care among older adults. Based on the identification of these attributes, a scale measuring them could be developed. If a valid and reliable scale is developed, then formal caregivers can be assessed for their degree of burden. The ability to measure the concept will facilitate future research.

Theory generation is advocated to guide future research. As this concept analysis has diminished conceptual confusion and delineated the concept from other similar concepts, theory generation will allow a basis for empirical testing. Future research needs to look at how caregiver burden may vary among the levels of staff of formal caregivers, care settings for older adults, and the case mix among these different settings. Research also needs to explore the positive and negative consequences of formal caregiver burden that influence the quality of care of older adults. If proven through theory and empirical testing interventions, practice implications may be to address formal caregiver burden, leading to improvement in the care of older adults through implementation of evidence-based research.

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Authors

Ms. Kunkle is PhD Student, College of Graduate Studies, Dr. Chaperon is Associate Professor, and Dr. Hanna is Director of PhD in Nursing Program, Professor, and Carol M. Wilson Chair in Nursing, College of Nursing, University of Nebraska Medical Center, Omaha, Nebraska.

The authors have disclosed no potential conflicts of interest, financial or otherwise. Ms. Kunkle acknowledges funding from the Nellie House Craven for an Academic Research Nursing Career Scholarship, University of Nebraska Medical Center.

Address correspondence to Rachel Kunkle, MHA, BSN, RN-BC, GRN, PhD Student, College of Nursing, University of Nebraska Medical Center, 985330 Nebraska Medical Center, Omaha, NE 68198; email: rachel.kunkle@unmc.edu.

Received: October 21, 2019
Accepted: April 01, 2020
Posted Online: July 08, 2020

10.3928/00989134-20200706-02

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