Family Caregivers Define and Manage the Nursing Home Placement Process.

571365 research-article2015

JFNXXX10.1177/1074840715571365Journal of Family NursingKoplow et al.

Article

Family Caregivers Define and Manage the Nursing Home Placement Process

Journal of Family Nursing 1–25 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840715571365 jfn.sagepub.com

Sarah M. Koplow, PhD, RN, APN1, Agatha M. Gallo, PhD, RN, APN/CPNP, FAAN1, Kathleen A. Knafl, PhD, FAAN2, Catherine Vincent, PhD, RN1, Olimpia Paun, PhD, PMHCNS-BC3, and Valerie Gruss, PhD, APN, CNP-BC1

Abstract The nursing home placement process is complex and difficult for family caregivers. This qualitative descriptive study examines the experiences of caregivers involved in the management of care and placement of an older family member using the Family Management Style Framework. Ten caregivers were recruited from four nursing homes in the Midwest. The caregivers were interviewed shortly after placement and again 3 months post-placement. Results provide a unique understanding of care management and the nursing home placement process from the perspective of the primary family caregiver. Overall, there were similarities across the same types of caregiving dyads, for example, spousal and adult-children caregivers. Caregivers expressed the need to maintain the identity of their older family member, a familial responsibility for caregiving, and change in their family relationship over time. Appreciating caregivers’ challenges and 1University

of Illinois at Chicago, USA of North Carolina at Chapel Hill, USA 3Rush University, Chicago, IL, USA 2University

Corresponding Author: Sarah M. Koplow, 18559 SW 50th Court, Miramar, FL 33029, USA. Email: [email protected]

Downloaded from jfn.sagepub.com at Karolinska Institutets Universitetsbibliotek on May 27, 2015

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Journal of Family Nursing

needs gives health care professionals a better understanding for how to provide assistance for a smoother nursing home transition. Keywords family caregivers, nursing home placement, qualitative research, Family Management Style Framework Caregiving for older adults in the United States is a complex process that involves informal family caregiving and formal services, such as nursing homes. Nearly 43.5 million Americans provide unpaid home care to an older family member, the economic value of which has been estimated at US$450 billion annually (Feinberg, Reinhard, Houser, & Choula, 2011; National Alliance for Caregiving & AARP, 2009). Family caregivers provide many time- and labor-intensive tasks, such as completion of activities of daily living (ADLs; for example, bathing, grooming, feeding, etc.), instrumental activities of daily living (IADLs; for example, laundry and clothing maintenance, money management, and overall health management), and complex medical/nursing tasks (e.g., medication administration, wound care, and operating specialized medical equipment; Reinhard, Levine, & Samis, 2012). The care recipients of this assistance endure a variety of debilitating and chronic conditions that limit their ability to complete tasks independently, including dementia/cognitive impairment and mobility issues (National Alliance for Caregiving & AARP, 2009; Reinhard, Levine, & Samis, 2014). Maintenance and responsibility for such care is associated with negative consequences for the caregiver, including increased burden and emotional stress, financial costs, decreased time for social activities, and physical and mental health decline (Feinberg et al., 2011; International Longevity Center— Schmieding Center for Senior Health and Education Taskforce: The caregiving project for older Americans, 2007). As their family members’ condition progresses, caregivers often reach a point where they are no longer able to provide care at home and have to consider nursing home placement (Chang & Schneider, 2010; Paun & Farran, 2006). The decision to place an older family member in a nursing home has long been considered a difficult and emotional process (Chang & Schneider, 2010; Paun & Farran, 2006). This decision is faced by millions of family caregivers as the number of older adults requiring long-term care is expected to nearly double from 13 million in 2000 to 27 million in 2050 (U.S. Department of Health and Human Services and U.S. Department of Labor, 2003). Previous researchers have looked at risk factors that increase the likelihood for nursing home placement, the situational events and catalyst that precipitated the need


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for placement, and the decision making of the caregiver involved in placement (Butcher, Holkup, Park, & Maas, 2001; Chang & Schneider, 2010; Gaugler, Yu, Krichbaum, & Wyman, 2009). Much of the research about nursing home placement has focused on the crisis event leading to the decision, which has included two major categories: an unplanned medical event that requires immediate attention and/or a breakdown in the caregiver’s ability to manage the relentless demands of care. Caregiver stress and burden has also been extensively studied as it is a known risk factor for placement and can continue to endure in caregivers post-placement (Gaugler, Mittelman, Hepburn, & Newcomer, 2009; Gaugler, Yu, et al., 2009). Investigators often have viewed nursing home placement as a single decision-making event during a crisis that often signals an end or substantial reduction in major caregiving responsibilities. However, evidence shows that caregivers continue to maintain responsibility for their family members beyond placement, and as a result their needs and expectations for support beyond initial placement should be explored (Baumbusch & Phinney, 2014; Paun & Farran, 2006). Rather than a single event, nursing home placement is more appropriately viewed as part of the ongoing caregiving journey and a process that continues as caregivers continue to adjust to new challenges and demands. Few researchers have sought to understand caregivers’ ongoing role post-placement, their perceptions of their changing role, and its implications for their health and well-being. Knowledge of this is important because caregivers are the ultimate decision makers whose tasks are crucial for ensuring the delivery of good care and in the overall welfare of their older family members. Based on the Family Management Style Framework (FMSF), the purpose of this qualitative descriptive study was to understand the ongoing caregiving experiences of primary family caregivers during the first few months following nursing home placement of a family member. Understanding these experiences will lead to increased information of how caregivers manage the nursing home placement process and incorporate the changes in their responsibilities into everyday life.

FMSF and Adaptation The FMSF was originally developed more than 20 years ago to conceptualize how family members incorporate the management of a child’s chronic condition into everyday family life (Knafl & Deatrick, 2003; Knafl, Deatrick, & Gallo, 2008; Knafl, Deatrick, & Havill, 2012). The three components of the FMSF—definition of the situation, management behaviors, and perceived consequences—provide a more complete understanding of family processes and strategies that families use to manage chronic conditions in the context of


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their everyday life. Each component is further delineated into associated dimensions. The components and dimensions are the building blocks for identifying patterns of family responses known as family management styles. The family management styles provide insights into family strengths and weaknesses with regard to condition management (Knafl et al., 2008). Although the FMSF has been used primarily with a pediatric population, it has been adapted previously for use with adult populations, including the influence of spirituality in the management of care of Parkinson’s disease (Bingham & Habermann, 2006), the family response to withdrawal of lifesustaining therapy and eventual death of a family member (Wiegand, 2012), and the exploration of family caregiver management of an older adult with dementia residing in the community (Beeber & Zimmerman, 2012). The adapted FMSF used in this study provides a framework for understanding important aspects of how the primary family caregiver incorporates their responsibilities into their everyday life following nursing home placement. The FMSF is a useful framework for use with family caregivers of older adults because it broadly draws attention to caregiving management in the context of everyday family life rather than focusing on a specific condition or a sole decision-making event (Knafl et al., 2012). The FMSF provided a unique structure for examining the nature of caregiving during the first few months following the nursing home placement with an emphasis on how the primary family caregiver viewed the placement and its impact on their role and relationships. The three adapted components of the FMSF include definition of the situation surrounding care and placement, management of care and placement, and the perceived consequences of care and placement. The definition of the situation surrounding care and placement describes how the caregiver defines the illnesses, vulnerabilities, and capabilities of their older family member and how these characteristics influence their ability to accomplish caregiving responsibilities. The management of care and placement encompasses the goals and philosophy that guide the caregivers’ overall approach to their role and responsibilities during the nursing home placement process. Perceived consequences of care and placement reflects how the caregiver views the impact of caregiving and nursing home placement on their relationship with their older family member, their continued role expectations post-placement, and their predictions regarding the trajectory of the functioning of their older family member. All three adapted components incorporate aspects of both care and the nursing home placement process. The placement decision is not a single decision-making event, but rather part of the ongoing process in the spectrum of caregiving responsibilities. Thus, in this study, the management of care and placement are viewed together from the perspective of the


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primary family caregiver. Table 1 presents the most recent definitions of the FMSF components and dimensions and an explanation of the adaptations used in this study (Knafl et al., 2012).

Method Design and Setting A qualitative descriptive, two-time-point design was used to elicit caregivers’ descriptions of how they define, manage, and perceive the consequences of the nursing home placement process. Qualitative description is an appropriate design as it allows the researcher to remain close to the data to provide a comprehensive summary of events using the everyday language of the participants (Neergaard, Olesen, Andersen, & Sondergaard, 2009; Sandelowski, 2000, 2010). The analytical process in qualitative description includes sorting through the data for the identification of important patterns, looking for similarities and differences among the data, and presenting an overview of the data in terms of existing knowledge (Neergaard et al., 2009). Caregivers were interviewed twice (30-45 days after initial placement and again 3 months post-placement) to understand how their views of their caregiving role have changed, their strategies for managing caregiving in this new context, and their perceptions of the consequences of the nursing home placement process. The initial interview time frame was chosen because it captures the time shortly after the decision and placement have been made while the caregivers are still adjusting to their situation. The 3-month interview point was selected to allow adequate time for the caregiver to reflect on the process of nursing home placement and provided an opportunity to elicit data on caregivers’ impressions of the differences in the nature and management of their caregiving responsibilities while in the nursing home setting. In addition, nursing home residents remaining at a facility for 3 months or longer are more likely to remain there for long-term care needs, rather than a briefer rehabilitation focused stay (Kaye, Harrington, & LaPlante, 2010; U.S. Department of Health and Human Services, 2007). A purposeful sample of 10 primary family caregivers was recruited from four nursing homes in the Midwest to uncover multiple perspectives of nursing home placement using a small, nested, in-context sample. This means that the small sample allowed the research questions to be analyzed in depth and maintained the context of the circumstances being studied (Miles, Huberman, & Saldaña, 2014). A methodological decision was made to only interview the primary family caregiver. While other family members may be present and provide support, it is often that the primary family caregiver is ultimately


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Table 1. FMSF Components and Dimensions and Adaptations for the Current Study. FMSF

Adaptation

Definition of the situation Child identity: Parent’s views of the child and the extent to which those views focus on the condition or normalcy and capabilities or vulnerabilities View of condition: Parental beliefs about the cause, seriousness, predictability, and course of the condition

Management mind-set: Parental views of the ease or difficulty of carrying out the treatment regimen and their ability to manage effectively

Definition of the situation surrounding care and placement Older family member’s identity: Identity of the older family member, including traits such as personality, capabilities, vulnerabilities, independence, and dependence and how this view affected management of care, nursing home placement, and adjustment Older family member’s health: Seriousness and predictability (or lack of predictability) of the older family member’s cognitive, mental, and physical health conditions and how these conditions influence the management of care, nursing home placement, and adjustment Management mind-set: Ease or difficulty of caregiving and their ability to manage care and placement and manage the care after placement, including the management of nursing home staff; how this affected nursing home placement and adjustment Family mutuality: Shared or discrepant views of the approach to the management of care and placement among family members

Parental mutuality: Parents’ beliefs about the extent to which they have shared or discrepant views of the child, the illness, their parenting philosophy, and their approach to condition management Management behaviors Management of care and placement Primary family caregiver philosophy: Goals, Parenting philosophy: Parent’s goals, priorities, and values that guide the priorities, values, and beliefs that guide caregiver’s approach to the management the overall approach and specific of care, placement, and adjustment strategies for condition management Approach to management and placement: Management approach: Parent’s Incorporation (or not) of care assessment of the extent to management into daily routine and which they and their child have how being a caregiver affects daily developed a routine and related life; how routines, daily life, and other strategies for management of the circumstances influence approach to condition and incorporating it into management and placement; how the everyday life management approach affects ongoing involvement in care post-placement

(continued)


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Koplow et al. Table 1. (continued) FMSF

Adaptation

Perceived consequences Family focus: Parent’s assessment of and satisfaction with how condition management has been incorporated into family life

Future expectations: Parent’s assessment of the implications of the condition for their child’s and family’s future

Perceived consequences of care and placement Primary family caregiver focus: Balance between being a primary family caregiver and other aspects of family life, including the relationship with the older family member; how this balance (or imbalance) affected the placement and adjustment and how the balance (and relationship) may have changed post-placement Future expectations: Assessment of the expectations for the role as a primary family caregiver and the trajectory of functioning and adjustment for the older family member post-placement

Note. FMSF = Family Management Style Framework.

responsible for caregiving and nursing home placement decisions (Buhr, Kuchibhatla, & Clipp, 2006; Chang & Schneider, 2010). In addition, Feetham’s (1991) criteria of family-related research guided the sample selection for the caregivers in that the view of one family member was used to understand the experiences of other family members and on the family unit. The inclusion criteria for the caregivers were as follows: (a) provide or manage the care of their older family member before and after placement, (b) be directly involved with the family members’ nursing home placement, (c) placement occurred within the past 45 days from the first interview, (d) were 21 years of age or older, and (e) read and spoke English fluently. No restrictions were placed on the caregiver in regard to sex, ethnicity, race, socioeconomic status, and education.

Procedure The study received approval by the overseeing University of Illinois at Chicago Institutional Review Board. Caregivers were recruited from the nursing homes using a variety of techniques, including a study flyer and the assistance of nursing home staff. At the beginning of the initial interview, the purpose of the study and study procedures were explained to the participants and consent forms were reviewed and signed. Participants were informed at


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both the initial and 3-month post-placement interview that they had the right to refuse any or all study procedures at any time without consequence. To ensure confidentiality, all participants’ names and the names of the nursing homes were removed and only ID code numbers were used to identify subject data. Initial interviews were face-to-face and took place at a location of convenience for the caregiver (i.e., their home, quiet areas in the nursing home, or a coffee shop). Caregivers received a thank-you card in the mail approximately 1 week after the initial interview, which also served as a reminder of the 3-month post-placement interview. Three-month post-placement interviews took place face-to-face or by telephone and occurred 3 to 4 months from the day of admission into the facility. Data collection occurred over an 8-month period in 2012. Both initial and follow-up interviews lasted approximately 45 to 75 min and were digitally recorded. Participants were given a gift card at the completion of both the initial interview and 3-month postplacement interview. As caregivers may have had continuing questions and issues after the interview, a list of local caregiving resources after the initial interview was provided to all participants. We developed two semi-structured interview guides based on the FMSF. The first interview focused on a description of the relationship between the caregiver and older family member, the management of care, and the circumstances surrounding the placement. The second interview addressed changes that have occurred, with a particular emphasis on the caregiving role and relationship between the caregiver and older family member. The interview questions were derived from the FMSF major components as well as a review of the pertinent literature. The interviews were divided into three major sections based on the FMSF: definition of the situation surrounding care and placement, management of care and placement, and perceived consequences of care and placement. Questions related to individual components and dimensions were also interwoven across the interview to facilitate caregivers’ narration of the chronological progression of events (i.e., from home caregiving to the nursing home placement). This led to a more open and reflexive narrative as caregivers described their processes and journeys. Table 2 shows example questions and their related FMSF components and dimensions.

Data Analysis Analysis was based on guidelines and techniques from Creswell (2007) and Miles et al. (2014). Analysis occurred concurrently with data collection. A professional transcriptionist transcribed interviews verbatim and each interview was checked for accuracy. ATLAS.ti Visual Qualitative Data Analysis (QDA), Version 5.7.1, was used to organize the data, manage coding, keep a reflective research diary using memos, and retrieve data on selected codes.


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Koplow et al. Table 2. Selected Interview Questions Related to FMSF Components and Dimensions. FMSF components and dimensions

Sample questions: Initial interview

Definition of the situation Older family What usual activities and tasks was member’s identity your OFM able to do for himself or herself, that is, paying bills, managing the home, personal care (bathing, dressing, etc.)? Older family Before placement, tell me about member’s health OFM living situation and (his or her) overall health. Management mindset

Prior to the placement, how did being a caregiver affect your life? For example, how much of your day/week was spent caring for OFM? Family mutuality Did you and your family agree that OFM needed to be cared for in a nursing home? Management of care and placement Primary family Before placement, what were your caregiver philosophy and your family expectations or goals for OFM’s care (i.e., maintaining them at home, preventing further decline, keeping them healthy)? How did giving care to OFM affect Approach to other parts of your life (i.e., job, management and finances, relationships with family placement members and others)? Were these experiences similar for other family members? Perceived consequences of care and placement Primary family What is your relationship like with caregiver focus OFM now? How often do other family members visit?

Future expectations

What are your expectations for your continued role and your family’s continued role as a caregiver?

Sample questions: 3-month interview Tell me about OFM’s daily life and activities. Are these activities similar to what they did prior to placement? Tell me about OFM’s overall health. Does their health status affect their ability to participate in their care? How does providing care to OFM now affect your life? Is this a change since prior to placement? Do your family work together to provide OFM assistance? What are your and your family’s expectations or goals for OFM’s care now?

Do you and your family have a routine for providing care/visits?

Please tell me about your relationship with OFM now. What kinds of activities do you do together? How do you decide what activities to do? How has the placement affected OFM? You? Other family members? What do you think of your and OFM’s quality of life?

Note. FMSF = Family Management Style Framework; OFM = older family member.


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All interviews were coded using codes that were based on the FMSF components and dimensions, relevant issues derived from the literature, and codes inductively derived from a review of interview transcripts. During the data analysis process, a query was used to retrieve and combine codes that described a specific FMSF component and dimension. From the query, an initial matrix for each caregiver was developed to organize data relevant to each FMSF component and dimension for both the initial and follow-up interviews. After the initial 10 matrices were completed, a final “supermatrix” compiled each component and dimension of the framework for every caregiver. The super-matrix was then condensed into a shortened summary. Review of the summaries enabled for comparison of similarities and differences across caregivers and components over time. To ensure quality and rigor, a number of techniques proposed by Creswell (2007) and Lincoln and Guba (1985) were used, including peer debriefing, gathering rich thick descriptions to allow for transferability, and maintenance of an audit trail and reflexive notebook. The results of the entire study were organized to focus the findings within each individual case and across cases. The “within case” analysis provided an understanding of each individual case. The “across-case” analysis highlights differences and similarities in experiences across cases and over time. Ayres, Kavanaugh, and Knafl (2003) suggest techniques in qualitative research that allow for the simultaneous examination of individual cases or stories (“within-case” analysis) and comparison across multiple cases to develop generalizations (“across-case” analysis). In this study, describing the situation around each individual caregiver (“within-case” analysis) allowed for the retention of the family context of their unique caregiving situation. Reviewing across families and over time (“across-case” analysis) captured the variation of experiences involved in the nursing home placement process across the three major components of the FMSF. In this article, we chose to report only the across-case analysis. Similar to other researchers utilizing the FMSF, we opted to provide a summary of the three components and interweave the dimensions rather than report on each dimension individually (Bousso, Misko, Mendes-Castillo, & Rossato, 2012). The quotes presented may reflect multiple dimensions and were selected to represent the overall experiences of caregivers.

Results Sample All 10 caregivers identified themselves as being the primary family caregiver and holding responsibility for the nursing home placement process of an


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older family member. The caregivers ranged in age from 52 to 86, with a mean of 70 years of age. Eight of the caregivers were women, with the most prevalent (n = 5) relationship being wife (caregiver) and husband (older family member). The sample included two son–father dyads, one daughter– mother dyad, and two other types of familial relationships, which led to variability in the type of caregiver dyads and provided a rich backdrop for the study. Our participants reflect the current prevalence and gender of family caregivers (i.e., predominately women, including wives and daughters; National Alliance for Caregiving & AARP, 2009). Most caregivers were retired, but two maintained full-time work. Education ranged from high school to graduate degrees, with most being educated at the high school level or above. All caregivers identified themselves as non-Hispanic Caucasian. The older family member/care recipients ranged in age from 72 to 90 years, with a mean of 83 years. Eight of the older family members were women. Reasons for placement reflected characteristics that are frequently described in the literature, including increasing assistance with ADLs and IADLs and worsening cognitive impairment (Gaugler, Yu, et al., 2009; Spillman & Long, 2009). Table 3 provides more detailed information about the older family member/care recipients.

Findings Across FMSF Components Overall, caregivers had more similarities than differences across their definitions of key aspects of the caregiving experience, management behaviors, and perceived consequences of care, especially those caregivers who had similar types of familial relationships (e.g., spousal caregivers, adult-children caregivers). The findings are organized by the three major components of the FMSF. Definition of the situation surrounding placement. The definition of the situation surrounding care and placement describes how the caregiver defines the illnesses, vulnerabilities, and capabilities of their older family member and how these characteristics influence their ability to accomplish caregiving responsibilities. The nature of the conditions of the older family members, especially those with progressive cognitive decline, made caregiving increasing difficult. During the initial interview, six caregivers described how the unpredictability of the family member’s condition made providing care at home more difficult and contributed to the need for nursing home placement. As one spousal caregiver explained as she tried to organize and troubleshoot solutions for her husband’s care, his declining cognition made caregiving too overwhelming:


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Table 3. Older Family Member/Care-Recipient Characteristics. Family dyad relationship (caregiver– care-recipient)

Major chronic conditions

Situation Situation prior to nursing home Entrance method to 3-month postplacement placement nursing home

Niece–uncle

Living home Cognitive impairment, falls, alone fracture

Wife–husband

Cognitive impairment, aggressive behaviors Cognitive impairment, cancer

Wife–husband

Son–father

Living with spouse with 24-hr live-in caregiver Living with spouse in independent living facility Cognitive Assisted living impairment, falls facility

Daughter– mother

Assisted living Cognitive impairment, falls, facility fracture

Wife–husband

Stroke, mobility issues

Wife–husband

Living with Cognitive impairment, falls, spouse fracture

Son–father

Cognitive impairment

Living with spouse

Acute hospitalization to sub-acute rehabilitation Placed by caregiver

Memory care unit in nursing home

Placed by caregiver

Deceased

Placed by caregiver

Memory care unit in nursing home Assisted living facility

Acute hospitalization to sub-acute rehabilitation Acute hospitalization to sub-acute rehabilitation Acute hospitalization to sub-acute rehabilitation Placed by caregiver

Assisted living facility with 16hr private duty caregivers Placed by caregiver Wife–husband Transient ischemic Living with spouse attack, cognitive impairment, mobility issues Placed by caregiver Living home Cognitive Sister-inalone with impairment, law–brother16-hr daily uncontrolled in-law caregivers diabetes

Long-term care unit in nursing home

Living with spouse with 24-hr live-in caregiver Long-term care unit in nursing home Memory care unit in nursing home Deceased

Long-term care unit in nursing

Everything, every day was a challenge. Every day I tried to do something that would make it easier. I mean I took all my dishes out of my breakfront [kitchen] and I bought little baskets and I put all his medicines in all the different things


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to try to organize it—the house so that it would be better. I got a gate there, you know, I bought the toilet seat, a non-spillable urinal thing . . . , and what does he do? He opens it and spills it all over the place. Like everything I did he just, like—there was nothing I could do to make it better . . . I made every attempt to make it better and it wasn’t better.

Three spousal caregivers who lived with their husbands prior to placement indicated that their husband’s condition deteriorated to the point where they were unable to leave them home alone for safety reasons. Caregiving became increasingly difficult, and impeded the caregiver’s ability to address their own needs and fulfill other responsibilities. One caregiver described how the unrelenting responsibilities of her husband’s care were very difficult and affected their relationship: He followed me everywhere. I had no alone time and that started to really bug me, and I did not want to be resentful but there were times when I did become resentful. You know, for heaven sakes if I was upstairs, if I was in the bathroom . . . that he thought was too long, he’d be there knocking on the door and, you know, if I was okay, and he always had to know where I was if he wasn’t in the room with me, and he always wanted to help but if he did help it would end up in a disaster and he tried.

At the 3-month post-placement interview, seven caregivers discussed how their caregiving burden became significantly easier because the staff were effectively handling their family member’s condition. Many caregivers said they felt relieved knowing that their family member was in a safe and structured environment, where they could receive the appropriate care that they needed. Interestingly, four caregivers described incidents in which their family member had fallen, but they still felt confident in the nursing home staff’s ability to provide safe care. The caregivers noted that having direct contact with staff and being able to communicate concerns were important considerations in making care management easier. Even if their family member’s condition deteriorated, having openness with the staff was crucial in being able to oversee care effectively and know that their family members were receiving the care they needed. Several caregivers discussed maintaining the family member’s identity as a major priority of care. During the initial interview caregivers described how certain disease states, specifically dementia, had taken away their family members’ identities. The recognition of this loss of identity greatly affected their relationships and expectations for the provision of care. Acknowledging this loss of identity was an important part of the caregiving journey. As one


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daughter illustrated how she needed to grieve the loss of her mother’s identity: . . . but I do feel like I’ve had to grieve a portion of my mom now that I can— I’m trying to articulate it. She’s just—I mean she’s not the same mom that we had before just because of the memory issues and she might not even remember what I was talking about, you know, so a little bit. A small portion, you know, some of us feel like we’ve had to grieve that portion . . .

Six caregivers described at the follow-up interviews how recreational activities and interactions with other residents and staff were immensely important in maintaining identities, social practices, and bringing out personality. For some of the caregivers, it did not matter if their family member actually participated in the recreational activity, but just having the opportunity for socialization was important. However, other caregivers remarked that observing their family member in the nursing home setting contributed to a further loss of identity. As one son described how difficult it was to observe his father’s isolation when compared with other residents: He’s there alone. He’s with all these other people but the bottom line to it is he’s there alone and even though he can’t get out on his own and he’d be in harm’s way, he was an outdoorsman, he was a sailor. He still thinks about escaping all the time. He needs that. Otherwise I come in there and he’s sitting at a table with a bunch of people and they’re all vegetables to a degree . . .

For all of the caregivers in this study, nursing home placement was a complex and discursive process. Caregivers continued to be involved postplacement and interaction with nursing home staff and significantly contributed toward a smoother and easier transition. The nursing home provided opportunities for activities and social visits. These interactions were important for helping caregivers maintain their family member’s identity, which was identified as a major priority of care. Management of care and placement. The management of care and placement encompasses the goals and philosophy that guide the caregivers’ overall approach to their role and responsibilities during the nursing home placement process. There was a noted difference in the priorities that influenced caregiving responsibilities between spouses and non-spousal caregivers. At the initial interview, the caregivers in the two son–father dyads and the two other familial dyads (e.g., non-spousal, non-adult-children) discussed their care management as a family obligation. Their priority for this approach to care


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was guided by their sense of respect and familial responsibility. Two caregivers described how their family member had been an important part of their lives and had previously provided for them, so it was now their duty to ensure they received good quality care. In her description of her relationship and obligation to care for her uncle, one caregiver noted the closeness of their family: “So we just did it because it needed to be done and he has been very good to our mother, you know, and he’s always been a good uncle.” This sense of family obligation also guided the non-spousal caregivers continued involvement in care responsibilities after the nursing home placement. Although several of the caregivers noted the importance of visiting and remaining involved because of a sense of family obligation, it also provided meaningful time and interactions with their family member. At the 3-month post-placement interview, one caregiver noted his responsibility to visit his father as well as why the experiences were so important: I think it’s an obligation for sure. My dad was always there for me through thick and thin my entire life. I mean completely. So I owe it to him. The other part of it is that, you know, it brightens up his whole day . . . if there’s multiple definitions to obligation, it’s a loving obligation, not a painful obligation.

The caregivers in the five wife–husband dyads did not discuss family responsibility as the priority for their philosophy toward management. Rather, caregiving was a natural progression in the course of their partnership and not considered to be an obligation. Two spousal caregivers specifically mentioned that they loved their husbands, and this mutual love guided their approach to care and placement. Each of the spousal caregivers kept their husbands at home with them for as long as possible prior to placement. Initially, the main priority for the spousal caregivers was to maintain and manage their husbands’ care at home. One spouse illustrated her conflict between keeping her husband at home and ensuring he was in the securest environment possible: “. . . because I love him very much I really wanted to keep him home as long as I possibly could. It’s just that we reached a point where it was no longer safe either for him or for me.” At the 3-month post-placement interview, the five spousal caregivers continued to prioritize their husbands’ needs. All of them noted that they visited nearly daily and checked with staff frequently to ensure their husbands were receiving good care. The daily visits were an important part of continuing care management and adjustment to nursing home placement. One caregiver described her need to visit her husband daily as a part of her own daily routine:


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. . . my responsibility as I saw it was to be there for him as much as I could and I really made a bargain with myself that as long as he was there, I was going to go every day even though some advised me against it. So I was there every day.

All of the caregivers discussed that their main priority for care management and placement was ensuring that their family member were receiving good care after placement. However, there was a difference between nonspousal caregivers and spousal caregivers in the perceived responsibility for ongoing care management. Non-spousal caregivers view post-placement care management as a family responsibility whereas spousal caregivers maintained care out of respect and love for their partners. Perceived consequences of the care and placement. Perceived consequences of care and placement reflects how the caregiver views the impact of caregiving and nursing home placement on their relationship with their older family member, their continued role expectations post-placement, and their predictions regarding the trajectory of the functioning of their older family member. Throughout the initial interview, four caregivers noted that during the time of home caregiving, there was a shift in their familial relationship as their family member had a worsening decline in their cognitive and/or physical health. They recognized that the nature of the relationship changed into a caregiver– care recipient relationship rather than a familial relationship. One spouse noted that her goal with placement was to move from identifying herself as her husband’s caregiver back to being his wife. She recognized during this move the magnitude of the transitions they had undergone during the course of their relationship: Well, really I mean relating to him as a wife . . . rather than as a caregiver. In a lot of ways having him at [the nursing home] [with] the separation . . . I recognize that I’m probably going through a grieving process at this point because our life has changed so dramatically and certainly it’s not as final as death but it represents a different kind of finality in terms of our relationship . . .

Many caregivers noted that the nursing home placement eased some of the burden of the direct hands-on-care so the focus could return to the familial relationship. However, several caregivers expressed difficulty in relinquishing management of caregiving activities to the nursing home staff. With the spousal caregivers, the physical separation of living apart from their husband’s due to placement was a challenging adjustment. Five caregivers described the nursing home placement process and the trajectory of their family member’s illness prompting a realization about the


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next steps in the caregiving journey. They expressed their understanding about the inevitability of their family members’ eventual death, but wanting to focus on ensuring that they were as comfortable as possible now. As one son remarked about the trajectory of his father’s functioning and his own continued role in his father’s life: Well, what I’ve seen with the disease so far is it’s not linear, so it isn’t likely to just go along slowly like this. Something will happen. Maybe not a catastrophic event but it will be a trigger and all of a sudden we’ll see a falloff in some way. I think it’s for us to just be there. I think right now it’s to set him up in the right place, which we’re at where he can be taken care of in full. Make the effort to bring him out, be with him, connect with him, have other people see him which we did recently and had him over and a bunch of friends came, and I think it’s just to make this as comfortable for him as humanly possible through this journey. That will be it.

All caregivers noted the importance of remaining involved postplacement. There was recognition of the need to relinquish hands-on caregiving activities to the nursing home staff and spend quality time re-establishing the familial relationship that existed previously. In addition, half of the caregivers saw this time as a reflection for the caregiving journey and the next steps forward, including planning advanced directives and for the eventuality of their family member’s death.

Discussion The purpose of this study was to understand the process of nursing home placement and its impact of the family caregiver. The adapted FMSF used in this study provided a unique appreciation of the impact of nursing home placement and changing caregiver roles. Through follow-up with the caregivers over time, it allowed for a larger picture of understanding the effects of nursing home placement on caregivers’ roles and appreciation of insights that are gained with perspective. This understanding can lead future studies, which focus on tailored family-centered approaches by nursing home professionals to address family concerns and challenges. Previous researchers have noted that one of the benefits of nursing home placement is a change in the caregiving role and a renewal of the family relationship between caregiver and older adult (Davies & Nolan, 2006). In this study, many caregivers stated that one of the advantages of placement was that there was a return back to relating to each other as family members. Visits were about the planning activities their family member would enjoy


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and spending time together. These activities and re-engagement of family relationships could be facilitated by staff to ease the potential negative emotions associated with placement and promote a smoother adjustment for the caregiver and their family member. Nursing home staff could encourage families to spend visits engaging in social activities rather than focusing on hands-on caregiving. In addition, families can help nursing home professionals provide tailored care by assisting the staff to learn about the identity of their family member and work together to find ways to ensure their needs are met (Baumbusch & Phinney, 2014; Davies & Nolan, 2006). This study shows that there are unique differences in perceptions and experiences between types of caregiving dyads. As found previously, there are distinct differences in the caregiving role between spouses and adultchildren (Friedemann & Buckwalter, 2014; Meuser & Marwit, 2001; Savundranayagam, Montgomery, & Kosloski, 2011). Noted in these earlier studies, for spousal caregivers, especially women, there is a strong commitment to take on caregiving responsibilities. Spouses are determined to provide the best care possible without outside assistance while attempting to not feel overwhelmed. In addition, wives acknowledged the loss of their companionship with their husbands and the development of a new type of caregiving-based relationship. Similarly in this study, the results highlight some of the important concerns for spousal caregivers involved in the nursing home placement process. For the spouses, the daily routine continued to revolve around their husbands’ care needs, even at the time of the follow-up interviews. This daily routine made it difficult to maintain a distinct spousal relationship aside from the hands-on caregiving relationship. Many of the spouses reported that they had hoped that the nursing home placement would allow for a return to their companionship, but recognized that adjustment to life without their husbands was both physically and emotionally difficult. In addition, this study exemplifies important considerations for adultchildren caregivers. As similarly reported by Meuser and Marwit (2001), the adult-children expressed the need to grieve the loss of their parent’s identity and the change in the family relationship. In this study, the nursing home placement process allowed the adult-children a chance to reflect on their grief. As the adult-children moved to accept their new caregiving role, they recognized the next steps in the journey, which included the eventual health and cognitive decline of their parent and a desire to maintain comfort while being present now.

Implications for FMSF Applying the FMSF to diverse types of families with chronic conditions expands our understanding of the major components of the framework. Using


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the FMSF in different types of settings allows for a fuller appreciation of the major challenges faced by families and provides avenues for strategies to enhance outcomes. Although the FMSF has been previously adapted for use in adult populations, there are some limitations of the use of a framework originally developed for understanding family responses to caring for a child with a chronic condition. The familial obligations and societal expectations of parents caring for children are significantly different from those of a family member managing the care of an older adult. For example, multiple components and dimensions of the original FMSF focus on the establishment of normalcy, with the expectation of children being able to contribute to management of the chronic condition and to overall family life (Knafl et al., 2012). As noted by Beeber and Zimmerman (2012), often a goal for children is to become independent to be able to successfully manage their condition. In addition, the FMSF emphasizes the parent’s need to be able to differentiate between the child’s condition and their unique personality and identity. In contrast, this study finds that the caregivers focus on maintaining normalcy, finding ways to preserve the family member’s identity, and incorporating care into a daily routine. However, health conditions that precipitated the need for care management and the nursing home placement of a family member were progressively debilitating, and as such, the focus of maintaining normalcy became unmanageable. The goal of caregivers managing care for an older family member with a chronic and deteriorating condition was not on independence, but on safety and planning care strategies to manage increasing dependence. Caregivers also want to preserve the identity of their family member for as long as possible but as the deteriorating health conditions progressed, caregivers grieve the loss of the identity of their family member. The identification of differences between caregivers of older family members and parents of children with a chronic condition highlights the need for further development of the framework for use in a variety of populations and settings.

Strengths and Limitations A major strength of this study was its strong theoretical underpinnings that guided all study phases. According to Sandelowski (1993), whether explicit or implicit, the theory in qualitative research is always present and central to the way the research is conducted. The FMSF was readily adaptable for use in this family caregiving population. Its application to caregiving populations aids in its continual development and recognition of the challenges faced by families managing chronic conditions (Knafl et al., 2012). This study adds to the current knowledge base about caregivers and nursing home placement through the theoretical lens of the FMSF. It contributed to the further development of


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the FMSF in varied caregiving populations. Future larger research studies with multiple caregivers would continue to build the FMSF through depiction of family management styles related to the nursing home placement process. Although there were a variety of caregiving dyads, a limitation of this study is that the participants were not racially and ethnically diverse. Caregiver recruitment from nursing homes was difficult. Facilitation through another researcher who previously worked with the nursing home staff was the best way to reach out and obtain a contact person within the facility who could assist with recruitment. Future research should broaden the sample to include diverse populations by using these recruitment methods in difficult to reach nursing homes. In addition, the sex of the family caregiver is a significant concept that influences the caregiving experience. An in-depth study comparing husband and wife caregivers and son and daughter caregivers would be further illuminating.

Conclusion Conducting this study with caregivers undergoing a crucial point in the trajectory of caregiving is an important step in addressing gaps within the nursing home placement process. Nurses and other health care professionals are involved at multiple points within the placement and have a crucial role as advocates who can assist families through the transition into a nursing home. They can educate other members of the interdisciplinary team about the unique situations faced by families as they undergo this transition. They can also further influence development and implementation of family-centered programs and interventions that foster partnerships between nursing home staff and caregivers and their families. There is an increased need for research about family caregivers because of the economic and social contributions of caregivers to the health care system and society. Conducting this study with caregivers is an important step in providing health care providers, future caregivers, and older adults with information to make clearer decisions regarding long-term care options and nursing home placement. Acknowledgment The authors thank the family caregivers who participated in this study and the nursing home staff for their assistance and support.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.


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Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by funding from the University of Illinois at Chicago Chancellor’s Education Award Fund; Illinois Area Health Education Centers Network, Health Professions Student/Fellowship Grant; Midwest Nursing Research Society Dissertation Research Grant; Sigma Theta Tau International, Alpha Lambda Chapter Research Award; and the University of Illinois at Chicago College of Nursing Seth and Denise Rosen Research Award.

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Author Biographies Sarah M. Koplow, PhD, RN, APN, is a graduate of the PhD program of the University of Illinois at Chicago, College of Nursing, and is currently working in the private health care sector in Florida. She has clinical and research expertise with the geriatric population, with a focus on their needs during transitional care periods. She has received several external and internal funding sources and research awards for her study with family caregivers’ involvement with the nursing home placement process. Her most recent research is in quality management with an emphasis on positive outcomes in persons with chronic disease. Recent publications include “Disability and Aging: An Evolutionary Concept Analysis” in Journal of Gerontological Nursing (2011, with S. M. Greco & C. Vincent). Agatha M. Gallo, PhD, RN, APN/CPNP, FAAN, is currently a Professor Emerita in the Department of Women, Children and Family Health Science at the University of Illinois at Chicago. She has focused her research on family response to childhood chronic illness, families where there is a child with a genetic condition, and more recently on an education intervention for young adults with sickle cell disease or


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sickle cell trait. Recent publications include “Evaluation of the SCKnowIQ Tool and Reproductive CHOICES Intervention Among Young Adults With Sickle Cell Disease or Sickle Cell Trait” in Clinical Nursing Research (2014, with D. J. Wilkie, E. Wang, R. J. Labotka, R. E. Molokie, C. Stahl, . . . A. Thompson), and “Reproductive Health Choices for Young Adults With Sickle Cell Disease or Trait: Randomized Controlled Trial Immediate Posttest Effects” in Nursing Research (2013, with D. J. Wilkie, Y. Yao, R. E. Molokie, C. Stahl, P. E. Hershberger, . . . A. Thompson). Kathleen A. Knafl, PhD, FAAN, is the associate dean for research and Frances Hill Fox Distinguished Professor at the School of Nursing, University of North Carolina at Chapel Hill. Her research focuses on family management of childhood chronic conditions, and she is one of the developers of the Family Management Style Framework and the Family Management Measure. She is widely published and is recognized as an expert in family and mixed-methods research. She serves as a research consultant to the National Institute of Nursing Research and to universities and researchers. She is on the editorial board of Research in Nursing and Health, Nursing Outlook, and Journal of Family Nursing and contributed to the founding of the International Family Nursing Association. Relevant publications include “The Online Parent Information and Support Project, Meeting Parents’ Information and Support Needs for HomeBased Management of Childhood Chronic Kidney Disease: Research Protocol” in Journal of Advanced Nursing (2012, with V. Swallow, S. Santacroce, A. Hall, T. Smith, M. Campbell, & N. Webb), “Patterns of Family Management of Childhood Chronic Conditions and Their Relationship to Child and Family Functioning” in Journal of Pediatric Nursing (2013, with J. Deatrick, G. Knafl, A. Gallo, M. Grey, & J. Dixon), and “Delimiting Family in Syntheses of Research on Childhood Chronic Conditions and Family Life” in Family Process (2014, with J. Leeman, N. Havill, J. Crandell, & M. Sandelowski). Catherine Vincent, PhD, RN, is an associate professor in the Department of Women, Children and Family Health Science at the University of Illinois at Chicago, College of Nursing. The long-term goal of her research program is to increase children’s pain relief by discovering what prevents nurses and parents from providing children with adequate pain medication and then developing and testing interventions aimed to increase children’s pain relief. In prior research, she examined relationships of nurses’ knowledge, attitudes, analgesic administration practices, and levels of children’s pain. She studied how nurses cognitively represent children’s pain and how these representations may influence behavior. Building on her prior research, she has developed Relieve Children’s Pain (RCP), an Internet-based multimedia educational intervention for nurses addressing the validity of pain intensity measurement and analgesic use. Recent publications include “Parents’ Management of Children’s Pain at Home After Surgery” in Journal for Specialists in Pediatric Nursing (2012, with M. Chiappetta, A. Beach, C. Kiolbasa, K. Latta, R. Maloney, & L. Van Roeyen), “Disability and Aging: An Evolutionary Concept Analysis” in Journal of Gerontological Nursing (2011, with S. M. Greco), and “Nurses’ Beliefs and Pain Management Practices: An Intervention Pilot” in Western Journal of Nursing Research (2011, with C. Van Hulle Vincent, D. J. Wilkie, & E. Wang).


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Olimpia Paun, PhD, PMHCNS-BC, is an associate professor at the Rush University College of Nursing, Department of Community, Systems, and Mental Health. She received foundation and federal funding to conduct research with dementia caregivers who placed family members in long-term care. She has pilot-tested a chronic grief intervention for dementia caregivers in transition. Recent publications include “A Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care” in Western Journal of Nursing (2014, with C. J. Farran, L. Fogg, D. Loukissa, P. Thomas, & R. Hoyer), and “Chronic Grief Management for Dementia Caregivers in Transition: Intervention Development and Implementation” in Journal of Gerontological Nursing (2011, with C. J. Farran). Valerie Gruss, PhD, APN, CNP-BC, is a clinical assistant professor in the Department of Biobehavioral Health Science at the University of Illinois at Chicago, College of Nursing. She is a board-certified nurse practitioner and researcher. She has a broad range of clinical expertise and research experience working in primary care and with multidisciplinary teams in a variety of settings. She was awarded a 2-year John A. Hartford Fellowship for geriatric research and scholarship. Her recent research includes the development of a clinical practice algorithm: “Evidence Based Treatment of Behavioral Symptoms of Persons With Dementia.” She has translated this research into an interactive algorithm via a downloadable application. The algorithm is downloadable to Android and is now available through Apple App Store (bsd). Recent publications include “I Think There Is a Worm in My Throat” in The Nurse Practitioner (2009), and “Job Stress Among Nursing Home Certified Nursing Assistants: Comparison of Empowered and Nonempowered Work Environments” in Alzheimer’s Care Quarterly (2004, with J. J. McCann, P. Edelman, & C. J. Farran).


Nursing Home Placement: The Process of Decision Making and Adaptation among Adult Children Caregivers of Demented Parents in Korea.

The Nursing Home Compare Report Card: Perceptions of Residents and Caregivers Regarding Quality Ratings and Nursing Home Choice.

Identifying at-risk dementia caregivers following institutionalization: the nursing home admission-burden and nursing home admission-depression prognostic tools.

Volume of home- and community-based services and time to nursing-home placement.

Needs of family caregivers in home care for older adults.

Family caregivers of older people in nursing homes.

Losing Items in the Psychogeriatric Nursing Home: The Perspective of Residents and Their Informal Caregivers.

The process of translating family nursing knowledge into clinical practice.

Evaluation of home visits using a nursing process approach.

Perceptions of the most helpful nursing behaviors in a home-care hospice setting: caregivers and nurses.

The influence of caregivers and behavioral and psychological symptoms on nursing home placement of persons with Alzheimer's disease: A matched case-control study.

The risk of nursing home placement and subsequent death among older adults.

Sleep problems in the community elderly as predictors of death and nursing home placement.

Nursing-using the nursing process.

Sleep and the Nursing Home.

Statins and the nursing home.

Waiting times for nursing-home placement: the impact of patients' choices.

Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents.

Hospice use among nursing home and non-nursing home patients.

Impact of technological innovation on a nursing home performance and on the medication-use process safety.

Psychiatric symptoms and nursing home placement of patients with Alzheimer's disease.

High tau levels in cerebrospinal fluid predict nursing home placement and rapid progression in Alzheimer's disease.

Managing Medications During Home Hospice Cancer Care: The Needs of Family Caregivers.

Family caregivers' perspectives on dementia-related dressing difficulties at home: The preservation of self model.