Journal of Gerontological Nursing

Feature Article 

Family Members’ Responsibilities to Nursing Home Residents: “She Is the only Mother I Got”

Mercedes Bern-Klug, PhD, MSW, MA; Sarah Forbes-Thompson, PhD, RN

Abstract

Findings from this qualitative study indicate that family members of nursing home residents hold themselves responsible for overseeing the care of their loved one, representing the resident’s perspective and history, and keeping the family connections. These role expectations can be assets to nursing homes. Nursing and social work staff are called on to be leaders among all staff to maximize constructive family involvement and minimize the stress families may experience if they are not able to fulfill their role expectations.

Abstract

Findings from this qualitative study indicate that family members of nursing home residents hold themselves responsible for overseeing the care of their loved one, representing the resident’s perspective and history, and keeping the family connections. These role expectations can be assets to nursing homes. Nursing and social work staff are called on to be leaders among all staff to maximize constructive family involvement and minimize the stress families may experience if they are not able to fulfill their role expectations.

Dr. Bern-Klug is a John A. Hartford Geriatric Social Work Faculty Scholar, Obermann Center for Advanced Studies Scholar, and Assistant Professor with joint appointments in the School of Social Work and the Aging Studies Program, The University of Iowa, Iowa City, Iowa, and Dr. Forbes-Thompson is Associate Dean, Academic Programs, University of Nebraska Medical Center, College of Nursing, Omaha, Nebraska.

Data collection for the original study was supported by the National Institute of Nursing Research (R15 NR04974, from 1999–2001, “End of Life in Nursing Homes: Process and Outcomes of Care,” principal investigator: Dr. Sarah Forbes). Support for the secondary analysis of these data was provided by a John A. Hartford Foundation Geriatric Social Work Doctoral Dissertation Award and a Project on Death in America Social Work Leadership Award to Dr. Mercedes Bern-Klug.

Address correspondence to Mercedes Bern-Klug, PhD, MSW, MA, Assistant Professor, Room 308 North Hall, The University of Iowa, Iowa City, IA 52242; e-mail: Mercedes-bern-klug@uiowa.edu.

From cradle to grave, family members provide the majority of health care to individuals who require it. Even in older adulthood, family members provide the bulk of care to older adults with physical and mental health needs (Georgetown University Long-Term Care Financing Project, 2003; Travis & Piercy, 2002). Many frail older adults are able to continue living in the community with the help of their family, friends, and community supports (Federal Interagency Forum on Aging-Related Statistics, 2004). However, in some cases, older adults’ care needs exceed the resources of the family and the community. Individuals and families turn to nursing homes for help. In most cases, families continue their concern and care for their loved one after the person is admitted (Brody, 1974; Dempsey, 1993). This study reports family members’ sense of their responsibilities toward their loved one living in a nursing home.

Background

It goes without saying that most of the people who live in U.S. nursing homes are in frail health. What is less well understood is that although the percentage of the older adult population living in nursing homes on any given day has declined during the past 15 years, so has the functional status of nursing home residents. In other words, as a group, the people living in nursing homes today are more functionally impaired than their earlier counterparts (National Center for Health Statistics [NCHS], 2005). The 1.4 million nursing home residents are dependent in mobility (80%), in eating (47%), and are incontinent (66%), or all three (37%) (NCHS, 2005). In addition, the majority of nursing home residents have cognitive impairment. Although most nursing home residents are older than age 80, it is important to remember that not all are. In the 2000 census, 162,700 nursing home residents were younger than age 65 (U.S. Census Bureau, 2000). Given the health status of nursing home residents, it is expected that their family members will be called on to help them navigate the experience of living and dying in a nursing home setting.

Family members can experience relief and stress with a loved one living and dying in a nursing home (Butcher, Holkup, Park, & Maas, 2001; Bern-Klug, 2008; Dellasega & Mastrian, 1995; Hagan, 2001). Solomon (1983) reported that the four crises of family members of nursing home residents include:

  • The decision to enter the institution.
  • The admission to the nursing home.
  • The move to a more intensive level of care.
  • The death of the resident.

Much of the literature on nursing home residents’ families is concerned with nursing home admission and, more recently, with end-of-life issues (Engle, 1998; Forbes-Thompson & Gessert, 2005; Parker-Oliver, 2005; Teno, 2003). Little research exists regarding the family’s experience of moving the resident to a more intensive level of care, perhaps because this kind of move straddles two conceptual literature bases still in need of greater overlap: the chronic illness literature and the end-of-life literature. Indeed, there is still much ambiguity about when the end of life begins for people who are of advanced old age and facing advanced chronic illness (Bern-Klug, 2004). This ambiguity is characteristic of living and dying as a nursing home resident.

In Describing Death in America: What We Need to Know, editors Lunney, Foley, Smith, and Gelband (2003) called for research to investigate how family members perceive their own roles in decision making when loved ones, including nursing home residents, approach the end of life. They recommended that end-of-life research be conducted and interpreted in the context of chronic illness: “In order to better understand how Americans die and to improve the care received by those at the end of life, we must look beyond the death itself to the experience of chronic and terminal illness as well as dying and bereavement” (p. 63).

This study reports findings based on comments made by family members of chronically ill, declining nursing home residents. The research question addressed in this study was “What is family members’ sense of their responsibilities toward their loved one living in a nursing home?”

Theoretical Framework

Role theory provided the theoretical framework for this study. Turner (1990) stated that a social role is a comprehensive pattern of behavior and attitudes constituting a strategy for coping with recurrent situations. Social roles consist of rights, duties, and expected behavior; they influence how one thinks one should behave, how one behaves, and how one is treated by others. The version of social role theory used in this study is rooted in social construction and symbolic interaction. A symbolic interactionist perspective on social role theory holds that “the social person is involved in much more than simply responding to cultural expectations connected with a position.... It points to the complexity of the interaction involved in each social role” (Lopata, 1995, p. 3).

This approach underscores the social nature of the development and understanding of both formal and informal social roles. The individual brings to a social role “those aspects of the self which are deemed necessary for the performance of duties and the receipt of rights” (Lopata, 1995, p. 5). In this study, we were concerned with the social role perceptions family members held about their own responsibilities or duties to their loved one living in a nursing home, recognizing that these perceptions are affected by the social environment, including the nursing home staff members, the resident, and the community.

Method

This study is a secondary analysis of data collected in an in-depth examination of dying in two nursing homes. The original study primarily used an ethnographic approach to explore factors that influenced dying from the perspective of declining residents, their family members, and staff. A more extensive review of the study method has been published elsewhere (Forbes-Thompson & Gessert, 2005). Heretofore, the family data had not been explored extensively. Thus, a secondary data analysis approach was used to address the question, “What is family members’ sense of their responsibilities toward their loved one living in a nursing home?” The original data were an excellent match for the secondary analysis because of the overlap in issues of interest and research team members, as well as other criteria established by Stewart (1993) and Hinds, Vogel, and Clarke-Steffen (1997).

Sample

The residents and family members were from two nursing homes located in a large midwestern city. The nursing homes were purposefully selected—one for its ethnic diversity and the other for its community reputation of providing good end-of-life care. Declining residents were the target of data collection and enrollment. Declining was defined using the National Hospice and Palliative Care Organization’s (1996) Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases or post-admission changes, such as functional decline; weight loss; personality change; social disengagement; an increase in infections, falls, or hospitalizations; or a decrease in cognition (Forbes, 2001).

The sample was selected for maximum heterogeneity, thus it was deliberately a non-random sample. Chronically ill residents with non-cancer diagnoses were the focus of the recruiting efforts, although some enrollees did have cancer. Family members who visited or who were listed as the next of kin on the resident’s medical chart were also invited to participate. Residents were followed for 6 months or until death. The research team, including the authors, spent approximately 8 months in each nursing facility.

This analysis is based on the qualitative data associated with 45 (80%) of the 56 residents enrolled in the study for whom sufficient qualitative data were collected. The age distribution of the residents spanned 60 years (ages 37 to 101); the mean age was 81 (SD = 11.9 years). Five residents were younger than age 70, and 5 were 95 or older. Two thirds were women, and one third was African American. Almost all (91%) of the 45 enrolled residents required staff supervision or assistance to move from a bed or chair. Approximately half (53%) had moderately or severely impaired decision making skills, according to their most recent Minimum Data Set assessment. Nineteen (42%) of the 45 residents died during the time of the study, and 10 were alive more than 2 years after study enrollment.

Two thirds of the 44 family members were women. (One resident had no family or friends listed on his medical chart as next of kin and had no visitors.) Sixty percent of the family members were younger than age 65, and 16% were older than 75. Close to three fourths (74%) of the family members visited the nursing home at least twice per week.

Data Collection

The institutional review board of the University that received funding for this study approved both the original study and the use of the data for the secondary analysis. Data collection strategies for the original study included participant observation, informal and formal interviewing, and document review. Participant observation occurred multiple times, and the researchers observed activities such as mealtimes, provision of direct care, resident care planning meetings, and activities. Formal interviews occurred with the residents, their families, and the staff. Informal interviews occurred spontaneously while the researchers were onsite. Medical records for enrolled residents were reviewed.

Data Analysis

The data were analyzed using qualitative content analysis. The coding frame developed for this study used both deductive and inductive coding. Data were first grouped into the role theory-inspired categories of expected behaviors, responsibilities/duties, and rights. Inductive codes were generated within these categories. By coding, we mean a process of identifying, naming, and grouping sentences, phrases, or paragraphs into conceptually relevant meaning units. Codes were reviewed and condensed into categories and themes relevant to answer the research question. Data organizing was facilitated by using QSR International’s NUD*IST software program, version 5.

Using the same coding schedule, data from each nursing home were coded separately. After comparing results from the two nursing homes, we determined that although the nursing homes were different in the structures and processes of care (Forbes-Thompson & Gessert, 2005), the families’ comments about their sense of responsibility toward their loved ones were similar. Therefore, the findings reported in this article reflect the comments made by family members from both nursing homes.

Rigor

Stewart’s (1998) criteria provide a useful framework for describing the trustworthiness of this study. Rather than seeking validity, this study sought veracity, which answers the question, “Has the researcher really observed what [his or her] description claims?” (Stewart, 1998, p. 15). Prolonged engagement (in this case, 16 months in the field), multiple readings of the transcripts, and the inclusion of numerous quotations support claims to veracity. To verify the preliminary findings generated during the secondary analysis, the first author (M.B.-K.) returned to the two nursing homes to invite feedback on the preliminary findings. The findings were supported.

Rather than reliability, this study sought objectivity in terms of “alertness,” “receptivity to the views of others,” “empathy,” and “open-mindedness,” and asked the question, “How well does this study transcend the perspectives of the researcher?” (Stewart, 1998, p. 16). Receptivity to the views of others was enhanced through peer debriefing, maintaining an audit trail that was reviewed on three occasions by a senior qualitative methodologist, and asking family members from the same nursing homes to respond to preliminary findings from the secondary analysis. In addition, after the preliminary findings had been established, the first author reread all of the data associated with each resident to fine-tune the concepts.

Rather than generalization, we used the concept of perspicacity. Stewart’s (1998) version of perspicacity captures the sense that a construct is specified to the extent that it can be applied beyond the site of research: “Does this research generate insights that are also applicable to other times, other places, in the human experience?” (Stewart, 1998, p. 16). Detailed quotations, in the Results section of this article, help enhance perspicacity, as does the comparison of findings with the published literature.

Results

Three themes highlighted what the family members perceived as their responsibilities toward their loved ones in a nursing home:

  • Overseers of care.
  • Representatives of the resident’s perspective and history.
  • Keepers of family connections.

The themes do not apply equally to all family members but do reflect common feelings held by many of them.

Overseers of Care

Many family members believed it was their responsibility to oversee the care provided by the staff to their family member. Spouses, siblings, adult children, and other family members made numerous comments about their expectation that their loved one would receive “basic care” in the nursing home. Family members used the term basic to mean the kind of care the family would provide at home, if they were able. In response to the researcher’s question about the care received by her bed-bound mother, one daughter commented, “It’s not a party, but it’s good basic care.” The family members’ comments pertaining to basic care can be grouped into the following categories: timeliness of changing soiled bedding and clothing, noticing a change in health status (e.g., fever, coughing, paralysis), help with repositioning, spending time with the resident while providing care (not rushing), treating the resident with respect, and cleanliness.

The extent to which the family members held themselves responsible for overseeing and seeking information about their loved one’s care varied widely. Some took on a surveillance role and wanted to be involved in daily decisions, whereas others took a more hands-off approach and assumed everything was going well unless the resident or a staff member mentioned otherwise. An example of the latter was the brother of a resident in her 90s; he was satisfied his sister was receiving good care because she had survived longer than he had expected. He said, “She’s been out here 10 years. They keep her going. They call me if she has a fall or something…. I think she is getting good care…. She’s been here 10 years; that’s testimony in itself.”

Family members’ assessment of the care their loved one received also varied enormously. In both nursing homes, some family members were pleased with the care, and others reported it was awful. Most families seemed to have mixed feelings. They were not upset enough to move the resident but were frustrated by things they thought would be easy to improve, such as removing a resident’s dentures after a meal, washing a resident’s hair, or giving a resident a drink of water.

Overseeing care included noticing when care was good. Some families in both nursing homes expressed deep gratitude toward the staff members, primarily direct care staff, for the care their loved one received. For example, looking back on the last days of his 90-year-old mother’s life (the resident had battled cancer for 10 years), a son commented:

The most helpful thing to me was the nurses at mom’s nursing home. Especially 2–3 of them were incredibly helpful. You can’t get all good ones, but mom sure had good ones…. They just lived there with mom. Anytime I walked into her room, they would be there in the room with her. They would be helping her, and that gave me a lot of peace of mind, that mom had good care. They called me anytime to let me know that something happened to her, and that gave me some peace of mind—to be in the loop and to understand what was going on.

When family members saw that basic care was being provided to their loved one, their trust in the staff increased. When good care was not consistently provided, trust in the staff dropped. Being able to trust the staff was an important step in family members’ achieving and maintaining peace of mind.

Cleanliness as a Proxy for Good Care. Most family members in both nursing homes commented to the researcher about highly valuing cleanliness. The family members were pleased and indeed proud that the nursing home where their loved one lived was clean. Family members also wanted to see their loved ones kept clean. They wanted to see clean hair, a clean face, a clean mouth, clean fingernails, and clean clothes. Seeing their loved one kept clean was foundational evidence of good care.

Seeing their loved one unclean raised suspicions about overall care. One daughter said, “Yes, I am pretty much satisfied, but I don’t like to come in and see eye crud, dirty ears, my mom’s nose not clean. These are the things that are easily seen by staff members, and yet they are not clean, so it just leaves the rest to my imagination.”

Staffing Concerns. The family members’ holding themselves responsible for overseeing the provision of care to their loved one was complicated by staffing challenges. The need for more direct care nursing staff was mentioned many times by many family members in both nursing homes. One said, “They could get more help; there is not enough…. At night, you don’t see anyone here…. Mom says from 11:00 p.m. [to] 7:00 a.m., you don’t see anyone.” Another family member reported:

Like the other day, she [my mother] was coughing. I asked, “Does my mother have a cold?” They said, “I’ll check the chart and tell you.” Nobody came back to tell me. That bothers me.… The only nurse is passing out medication—[so the nurse] can’t leave. You can’t find them at the nurse’s desk. I walk up looking for someone, [and] there is no one there. And don’t even talk to me about weekends or evenings. They don’t have enough people working.

Through their experiences of overseeing the care of their loved one, the family members in both nursing homes believed that a lack of nurse aides was a direct obstacle to the residents’ receipt of care. It is unclear how other factors may be contributing to the lack of prompt attention to residents’ care needs, in particular, the frequently mentioned needs related to continence and repositioning. As far as many family members were concerned, dependable and knowledgeable nurse aides are essential for adequate care. The following comment reflects the family members’ connection between lack of staff and poor resident cleanliness and, therefore, poor care. This woman captured the sentiments of many family members attending a family council meeting, who nodded in agreement:

I will never get used to coming in here and seeing my mom lying in her feces. That is not right. That is not good care. I don’t care what anyone says…. I can tell you right now, that is not care. It makes a person want to sue the nursing home. And it is because of not enough staff. It isn’t right…. Staff may have 10 or 20 people to care for, but she is the only mother I got [sic], and I don’t like her sitting in feces.

Other family members expressed their feelings about the lack of staff as life-or-death issues. One daughter expressed the following frustration:

A social worker once asked me if I would want my mother to be revived if her heart began to fail. My response was this, “What is the difference? When it takes 30 minutes for someone to respond to the emergency button, there will be no need to revive her—by then she’ll be gone.”

One son wondered if his mother’s life was cut short because of poor care. After his mother died, he hired a lawyer. He considered filing a lawsuit against the nursing home for poor care, which he believed led to his mother’s death. He was deeply concerned about the response time for meeting his mother’s basic care needs. He became frustrated during visits to the nursing home by call lights that went unanswered and when he saw residents, including his mother, laying in soiled clothing. While his mother was alive, he spoke with the nursing home administrator, who said there was not enough money to hire more staff. Rather than considering it a budgetary issue, the son considered it a “human rights issue.” He explained, “What is a family supposed to do? How are you supposed to support your family when they need more help than you can give them?”

Representatives of the Resident’s Perspective and History

The second theme related to family responsibilities toward their loved ones involves representing the resident’s perspective to the staff. Although staff members know the facility and its protocols and rules and are learning about the residents in their current conditions, it is the family who knows the personal and health history of their loved one. The families’ connection to the resident had developed over decades; in some cases, over more than half a century. Family members remember which of the resident’s hips was operated on and when. They remember medication allergies. They know the long struggle with cancer or diabetes or dementia that the resident had endured. One resident said about her daughter, “She remembers pain I forget I ever had.” Family members are able to help the staff understand the resident in the context of the rest of his or her life, if staff members have the time and are willing to listen.

It was disconcerting to family members to have their knowledge and insights about their loved one disregarded by the staff. One daughter noticed on a Friday afternoon that her mother was unable to move her left arm or leg and that her facial expression looked odd. She tracked down the charge nurse and told her she thought her mother was having a stroke. The charge nurse told the daughter that sometimes her mother acts that way and dismissed the comment. On Monday, when other regular staff members also noticed that the resident was not herself, the same charge nurse who dismissed the daughter’s comments on Friday sent the resident to the hospital where it was determined that she did, in fact, have a stroke. By then it was too late for medication to be effective in reversing the stroke. The daughter was angry as she told the story to the researcher, stating, “That’s the only thing that really pisses me off about this place is you know every time I tell them something, they try and tell me I am wrong.”

Sometimes the staff and the family member agreed a resident’s behavior was problematic but disagreed on the underlying cause and, therefore, on the solution. Although the staff members were the experts on the effects of the current behavior, the family members were often the experts on putting the behavior into context. For example, the daughter of one resident conceded that her mother was treating the staff poorly by yelling at them, refusing to accept medication from them, and demanding they leave her room. The charge nurse classified the resident as a “behavior problem,” but the daughter considered that some of the behavior may be due to early dementia and the fact that her mother’s eyeglasses had been lost in the nursing home months before. The resident could not see who was in her room. The daughter also reported that her mother had poor hearing and was startled easily when she noticed staff in her room. The daughter attended a care plan meeting and made her case to the staff. A member of the nursing staff suggested the daughter find another placement for her mother. A social services staff member followed up on the daughter’s view of the situation and asked the resident how she would like to be treated by the staff. The social worker shared the resident’s preferences with the nurse aides who were caring for this resident and charted this note in the medical record:

Spoke with [the resident] regarding dislikes in [nursing home] placement and thoughts about death. 1) Don’t call her “honey, sweetie, etc.” Address her by her first name or Mrs. __. 2) Be careful with approach and explanation…. Show concern; don’t just say “wait a minute.” 3) [Resident] is frustrated by a particular nurse. 4) [Resident] is bothered when staff persist. 5) This writer observed that [resident] gets angry if staff “tell” her what they are going to do and then quickly do so without giving her time to process what they have said. [Resident] is unhappy but does not know where she would rather be. Says she wants to die, “I wasn’t playing, I mean it.” She says she wants to get better or to die. Says she likes cookies. [Resident] doesn’t hear well. Wears glasses. She lost her glasses since admitted to facility. Falls are a great concern.

The issue of when and how much to speak up about care concerns was mentioned as family members discussed their responsibilities toward their loved ones. Some family members learned to think twice before speaking up on behalf of the resident. A daughter reported that although she felt comfortable tracking down the charge nurse, the administrator, or the social worker to point out some of her mother’s un-met needs, she believed she had to be careful what she complained about and not to complain too much. She explained:

You really got to watch what you say. You are not free to really speak your mind…. I think to myself, should I go over there and raise Cain? If I do, will they take it out on mom when I leave? Then they will really ignore her.

One family member said she stopped attending quarterly care meetings with the staff because she did not feel her comments were welcomed at the meetings. An upper-level staff member told this adult daughter that if she did not like the nursing home, she was welcome to move her parent to another facility. That bothered and frightened the family member, and she stopped bringing unmet resident care needs to the staff’s attention.

Keepers of Family Connections

Most family members in this study remained committed to being part of their loved one’s daily life out of a sense of love or duty. This commitment represents the third theme. This desire to remain connected was grounded in a combination of the family members’ expectations of themselves, of their capabilities (e.g., time, health, transportation), and the nature of their relationship with their loved one through the years. The field notes included many concrete examples of family members demonstrating their connection, including visiting, telephoning, sending flowers, giving gifts, bringing special food, providing supplies (e.g., makeup, clothing), decorating the room with the resident’s personal possessions, attending meetings about the resident’s care, meeting loved ones at the emergency room, coming to eat with the resident, and taking the resident out of the nursing home on occasion.

Many of the family members who were a generation behind the resident explained that their loving concern was a way to return the care the resident had provided to them earlier in life. One stepdaughter who visited her stepmother daily and often brought home-cooked meals commented, “She did for us when we were young, this is her payback.” A nephew said of his uncle (a resident) and his aunt (who had died recently), “They cared for me when I needed it. I should return the values.”

Another nephew mentioned that his 92-year-old aunt on his father’s side had married as a young woman. Her husband had died when she was in her late 20s. She then lived by herself until age 90. The nephew said his dad kept an eye out for her and would bring her groceries occasionally or fix things around her house. The nephew mentioned that his aunt had helped to raise him and that she was a very important part of his growing up. When the nephew’s father died 15 years ago, the nephew took his aunt aside at the funeral and said, “Auntie, now that Daddy’s gone, I’ll take care of you.” He remained an important part of her life in the nursing home.

Family members remained involved in the lives of the nursing home residents out of a sense of love or, sometimes, a sense of obligation or duty. In one case, the resident had abandoned the family when the daughter was 14 years old. With her father in his old age and her mother dead, the daughter was the responsible party and the family member most involved in his care. She remained involved not because of who he was but because of who she was.

Limitations

In the original study, the respondents were never directly asked about their sense of their social role responsibilities toward their loved one in a nursing home. The findings were developed during a secondary analysis of all of the comments the family members shared with the researchers during the course of formal and informal interviews, primarily about their impressions of the care the resident was receiving. Although the preliminary findings were supported by family members from both nursing homes, additional themes may have been added to those presented in this article had the respondents been directly asked the question.

The themes we report are general themes from a heterogeneous sample. To understand how the themes may be fine-tuned based on ethnicity, gender, relationship to resident, resident’s illness, and so forth, further research is needed.

Discussion and Implications

Despite the fact that the nursing home residents in the original study were invited to enroll because they were considered to be at the end of life, the findings reported in this article did not reveal an emphasis on end-of-life issues facing family members. Indeed, the themes from the family perspective are not specific to the end-of-life experience of their loved one, but rather to the nursing home experience in general. This is not completely surprising because less than half of the residents died during the study and 10 were alive 2 years after study enrollment. This is in keeping with results from the SUPPORT study, which indicated that the timing of death for people with advanced, multiple chronic illnesses is notoriously difficult to predict at the individual level (Lynn et al., 1996). Therefore, advocates for excellence in end-of-life care in the nursing home context should strongly support excellence in overall care, because the distinction between candidates for care as usual and end-of-life care among older adults with multiple chronic conditions living in a nursing home is blurred at best. As exemplified by these findings, the quality of care provided by the nursing home staff will affect the family members’ ability to meet their own responsibilities toward the resident throughout the stay, including at the end of life. The quality of care affects family members’ peace of mind.

The remainder of this discussion is organized around two ideas that underscore the need for strong collaboration among all nursing home staff members: a) Family members have much to contribute to the life of the facility and the lives of individual residents; and b) Family members may have emotional needs related to having a loved one live and die in a nursing home.

Family Members as Contributors

We have reported that the family members saw themselves as overseers of care, representatives of the resident’s perspective and history, and keepers of family connections. Many family members have the information, perspectives, time, and commitment to help improve the experience of residents living in a nursing home.

In their qualitative study of self-perceived roles of family caregivers in the United Kingdom, Davies and Nolan (2006) reported three themes, two of which are similar to those reported in this article: Maintaining Continuity and Keeping an Eye on the care received. Evidence for their third theme, Contributing to the Nursing Home Community, was not found in this study. However, their study was focused more on the transition to the nursing home, and ours on residents with declining health.

During federally mandated quarterly care plan meetings to which the residents and their family members are to be invited, nursing home staff should ensure the family members’ ideas, insights, and perspectives are welcomed and carefully considered. Many family members are unfamiliar with daily living and dying in the nursing home context. Nursing and social work staff, along with the facility’s medical director, should consider organizing regular group meetings to help socialize family members to the nursing home setting, provide education about common disease processes affecting living and dying with advanced chronic illness, and offer information and support related to constructive ways to advocate for the needs of loved ones. Family members could also benefit from the emotional support of staff and other family members attending these meetings. Much of this information could also be stored on the nursing home’s Web site, summarized for family council meetings, and included in facility newsletters. Research is needed to test the effectiveness of such mechanisms, especially for family members at different stages of the family life cycle and from different racial, ethnic, and religious groups. Another suggestion is for nursing home staff to experiment with a family section on the residents’ medical chart, so family members (who have access to the resident’s confidential information) can share their observations, insights, and information about the resident with staff who may work on shifts without much direct family contact.

Tension exists between the group care that staff needs to provide to all residents and the individual care a family may want for their loved one. To keep the relationship between family members and staff collegial, rather than adversarial, family members may benefit from help in understanding the culture, constraints, and challenges staff face in providing care to all residents. On the other hand, staff need to be constantly reminded of how emotionally difficult it can be for family members to have a loved one living and dying in a nursing home (e.g., “She is the only mother I got.”). Without realistic staff (including nursing and other kinds of staff, such as social work and activities) to resident ratios, a stated commitment to excellent care is not achievable.

Family Members with Emotional Needs

Bauer (2006) reported that nursing home staff perceive the environment as their domain and that residents and their families are believed to fall under their authority and control. Friedemann, Montgomery, Rice, and Farrell (1999) reported that family members face uncertainty about their role in the nursing home. Role theory indicates that a social role is affected by individuals’ own expectations of themselves and the expectations of others in the social environment. If nursing home staff do not clearly communicate the role of family members, then family members must figure it out on their own.

We recommend that at admission and throughout the stay, nursing home staff develop and communicate opportunities for family participation. Some family members hold themselves responsible for overseeing the care of their loved one, representing the resident’s perspective and history, and keeping the family connections; therefore, if their self-expectations are not met, the result may be stress, strain, frustration, anger, and deep regret, according to role theory. These feelings can be damaging to family members and can affect their relationship with the staff and the resident.

We call especially for nursing and social work staff in nursing homes to take the lead and work together to identify and address family members’ concerns. The nursing staff works most closely with residents, and social work staff can be an asset to residents and family members who are facing emotional and psychosocial challenges related to nursing home living and dying. According to the National Association of Social Workers (2003), part of the role of social workers in long-term care is working with the family around psychosocial issues related to health declines; Beaulieu (2002) and Brody (1974) concurred. But nurses and social workers cannot work miracles alone; families would benefit from information and support from all staff members.

We cannot expect all of the adaptation to occur at the individual resident and family level. It is important to work toward making the nursing home environment responsive to the needs of residents and family members. Nursing home staff should strive to anticipate common resident and family emotional needs and to be mindful of the unique needs of some residents and family members related to their health scenario, family history, or other circumstances. Staff need to constantly ask, “To what extent does our facility support positive family involvement?”

Families hold themselves responsible for demonstrating ongoing commitment to family connections. Many go to great lengths to keep in touch on a regular basis, through daily visits, telephone calls, and other activities. Although nursing home staff members could develop ways to recognize, honor, and celebrate these enduring family connections, staff should not be expected to shoulder this challenge alone. The community needs to step forward to recognize and support family members as they continue to care for loved ones in nursing homes.

Conclusion

Family members have strengths that, if identified and maximized, can be assets to nursing home residents and to nursing homes in general. Families can be assets and have emotional needs simultaneously. Nurses can play an important role in helping family members adjust to having a loved one living in a nursing home and can help the nursing home better meet the needs of the resident by learning about the resident from the family. Nurses can use their skills and knowledge to identify family members who may be struggling with emotional challenges related to having a loved one living and dying in a nursing home. Nurses are encouraged to work closely with the social work staff to anticipate, identify, and address the informational and emotional needs of family members.

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Family Members’ Responsibilities

Bern-Klug, M & Forbes-Thompson, S2008. Family Members’ Responsibilities to Nursing Home Residents: “She Is the Only Mother I Got.”Journal of Gerontological Nursing, 342, 43–52.

  1. The quality of care provided by the nursing home staff will affect the family members’ ability to meet their own responsibilities toward the resident throughout the stay, including at the end of life.

  2. Nurses can play an important role in helping family members adjust to having a loved one living in a nursing home and can help the nursing home better meet the needs of the resident by learning about the resident from the family.

  3. Nurses are encouraged to work closely with the social work staff to anticipate, identify, and address the informational and emotional needs of family members.

Authors

Dr. Bern-Klug is a John A. Hartford Geriatric Social Work Faculty Scholar, Obermann Center for Advanced Studies Scholar, and Assistant Professor with joint appointments in the School of Social Work and the Aging Studies Program, The University of Iowa, Iowa City, Iowa, and Dr. Forbes-Thompson is Associate Dean, Academic Programs, University of Nebraska Medical Center, College of Nursing, Omaha, Nebraska.

Address correspondence to Mercedes Bern-Klug, PhD, MSW, MA, Assistant Professor, Room 308 North Hall, The University of Iowa, Iowa City, IA 52242; e-mail: .Mercedes-bern-klug@uiowa.edu

10.3928/00989134-20080201-02

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