Filling In: Family Member Support for Nonrelative Residents in Long-Term Care Homes

Abstract

Background and Objectives

Past research about family involvement in long-term care (LTC) homes mainly focuses on family members’ involvement with their own relative, interactions with staff, and collective activities such as Family Councils. Our research provides novel insights into family member’s involvement in the care of residents who are not their relatives, an area that has not previously been explored.

Research Design and Methods

This critical ethnographic study examined ways that family members negotiate and navigate their roles within LTC homes. Data collection and analysis took place at 3 LTC homes in British Columbia, Canada, between 2014 and 2018. Data were collected through participant observation and semistructured interviews. Eleven family member participants shared experiences of caring for residents who were not their relatives.

Results

The umbrella theme was “filling in,” which takes place in a care environment that is understaffed and underresourced. The subthemes reflect the various ways that families are “filling in”: responding to resident’s needs, supporting staff to respond to resident needs, and filling in for residents’ families.

Discussion and Implications

Caring for residents who are not their relatives is facet of family involvement in LTC homes that has not been previously explored. Many family members have expertise in providing person-centered care and they extend this expertise to residents who are not their relatives. Policies and legislation are needed to formalize family involvement in caring for nonrelative residents as it is a component of quality of care for all residents.

Background and Objectives

Family presence is a fundamental part of daily life in long-term care (LTC) homes (also referred to as nursing homes, aged care facilities, and residential care facilities; a key characteristic of these homes is that residents need round-the-clock nursing care). Family members’ involvement in their relatives’ care is well documented and touches on all aspects of support, including personal/physical, emotional, and instrumental care (Gaugler & Mitchell, 2021). Roberts and colleagues (2020) found that family contributions were mediated by individual- and facility-level factors. For example, family members provided more “hands-on” care when their relative was an older woman and had greater cognitive impairment. As well, family members who were women, older, spouses, had higher educational attainment, and from racial minorities were more involved in direct care. Family members were less involved in direct care when they found the staff to be friendly and felt satisfied with communication with staff.

Another focus of research in this area is family–staff relations. Family members of residents are typically positioned as “visitors” by staff, despite their substantial involvement in and contributions to care (Holmgren et al., 2013). Issues affecting the relationship between family members and staff tend to center around trust-building and a lack of familiarity with each other, family members’ need to redefine their caregiving role, care expectations, and communication (Hovenga et al., 2022). At times, staff may also leverage their formal roles in LTC settings to limit family involvement, using it to impede family advocacy for their relative (Baumbusch & Phinney, 2014). Other researchers have suggested that when family members feel they are being listened to and their knowledge about their relatives is valued, relationships with staff are perceived more positively (Barken & Lowndes, 2018).

Rarely considered in the existing body of literature are the ways in which family members contribute to the care of residents who are not their relatives. In a comprehensive review of the literature about family involvement in LTC homes, Puurveen and colleagues (2018) describe the contributions of family members to the care of residents who are not their relatives in the following ways: facilitating leisure and social activities, and assisting in staff tasks such as distributing refreshments and meals. The motivations for engaging in these activities were altruistic, connected to personal areas of interest, or a means to facilitate relationships for their relative. Barken et al. (2017) similarly identify ways in which family members supplement care provided by staff while connecting these practices to historical understaffing and underresourcing of supports in LTC. The authors describe the absence of family involvement in care from site documents such as informational guidebooks and pamphlets, which reinforces the invisibility of these contributions. Despite their reliance on families, research illustrates ways that administrators manage family involvement by threatening to restrict access to their relative if family members were too vocal in advocating for other residents (Baumbusch & Phinney, 2014).

Given the limited exploration of family members’ role in the care of residents who are not their relatives, the aim of this paper is to explore this aspect of family involvement in LTC homes. It is important to address this gap in knowledge in order to more fully illustrate the essential role of families within LTC homes, and to extend understanding of how their involvement also contributes to the quality of care of all residents. Within the context of a critical ethnographic study examining how family members negotiate their roles within this environment, the research question guiding our inquiry was: how do family members contribute to the care of residents who are not their relatives in LTC homes?

Research Design and Methods

The methodology for this study was critical ethnography. Critical ethnography is an approach that surfaces power relations and inequities through the process of immersion. As a methodology, it prompts researchers to identify and disrupt the status quo by questioning and analyzing the accepted view of a culture or environment (Torres, 2021). Within the context of family presence in LTC homes, critical ethnography is particularly useful. The role of families in this setting is informal in that most aspects of family involvement are not formalized in oversight legislation or policies. Family presence is often negotiated through relations with staff and administrators. This negotiation was illustrated during the coronavirus disease 2019 (COVID-19) pandemic where administrators and staff had varying approaches to managing family presence through the inconsistent application of public health measures. For example, in our study about family visitation we found that although public health measures were set at the provincial level, it was then up to individual administrators to interpret and apply the measures. As a result, there was inequitable access to visitation by family members across different LTC homes (Cooke et al., 2023). These kinds of interactions, that is when interpersonal interactions are mediated by structures such as policies and procedures, are well suited to ethnographic research that involves researcher immersion and observation.

As part of a broader inquiry into how family members negotiate their presence in LTC homes, we identified engagement with residents who are not their relatives as a role some family members adopted. Findings that are not the main focus of an inquiry but are important new areas of exploration are often associated with “negative” or “contradictory” cases (McPherson & Horne, 2006; Phoenix & Orr, 2017). In our study, however, the cases were not so much contradictory to the larger data set as different or unanticipated. These are important findings that help to extend what is known (or expected to be known) on a topic and identify new areas for further inquiry. Given the scant amount of research about family members caring for residents who are not their relatives, we decided to further explore the “exceptions” that arose in our study. Research ethics approval was granted by the University of British Columbia’s Behavioural Research Ethics Board.

Setting

The study took place at three LTC homes in British Columbia, Canada. At Site 1 there were 80 residents and it was publicly owned by a health authority and located in an urban area. Site 2 was also home to 80 residents; however, it was owned by a nonprofit society and was located in a suburban area. Site 3 was the largest site with 150 residents, and was owned by a nonprofit society and located in a rural setting. Within the funding and ownership model of British Columbia, all participating sites were publicly funded. The sites were chosen to allow us to compare and contrast families’ experiences in differently owned care homes and across communities of various sizes. At all sites we encountered family members who were involved in the care of residents who are not their relatives.

Recruitment and Participants

At each site, a period of “entry to the field,” which is an initial stage in ethnographic research, took place to facilitate participant recruitment. During this stage, we sent letters of information to every resident’s primary family contact person as identified within their medical record. We also posted flyers in public areas and held information sessions for family members. When a family member expressed interest in participating, we provided them with the consent form, which a research team member reviewed with them. Because of the ongoing nature of data collection, we renewed consent verbally during each subsequent interaction.

Across the three sites, there were 38 family member participants including 26 women and 12 men. Within this larger group, 11 family members identified the role of being involved with residents who were not their relatives during data collection. Demographic information about these 11 family members is in Table 1.

Table 1.

Participant Demographics (N = 11)

Characteristic	N
Family member participants
Age (years)
Mean	63
Range	48–78
Gender
Men	1
Women	10
Race
White	10
Other	1
Highest education level
Master’s degree	2
Bachelor’s degree	2
College diploma	5
High school diploma	2
Employment status
Full-time	2
Part-time	2
Retired	5
Other	2
Relationship to person living in long-term care home
Child	8
Spouse	2
Sibling	1
Relative living in long-term care home
Age (years)
Mean	85
Range	77–97
Gender
Men	4
Women	7
Length of time living in long-term care home (months)
Mean	28
Range	2–111
Missing	1

Data Collection

In keeping with ethnographic methods, an immersive period of fieldwork occurred at each site. We conducted data collection consecutively at the three sites, which allowed us to focus on each site individually, and then analyzed the data across all sites. We collected data between 2014 and 2018. The main sources of data were semistructured interviews and participant observations. Each participant was assigned a code to maintain confidentiality. Participant codes identified the role of the individual (e.g., FM = family member, R = resident, S = staff), assigned a site (e.g., Site 1 = 01, Site 2 = 02, Site 3 = 03), and then a consecutive number for their role. In the findings section, we have included participant codes and brief information about their characteristics.

Across the three sites, 38 family members participated in 36 semistructured interviews, as two families chose to have more than one family member present for an interview. Three team members conducted the semistructured interviews; one was a postdoctoral fellow with extensive experience in qualitative research conducted in LTC settings, two were graduate trainees (gerontology, social work) who had some experience with qualitative methods and received training on conducting the interview for this study. Interviews were scheduled at a time and place convenient for the family members. An interview guide informed by existing research about family involvement in LTC homes was used. The interviews ranged between 22 min and 3 hr 48 min, with an average of 1 hr 37 min. Interviews were transcribed verbatim and identifying information was removed prior to entering the transcript into NVivo11, a qualitative software program used to support data management and analysis.

Participant observation is a hallmark of ethnographic research. The same team members who conducted the interviews did the participant observations. Across the three sites we conducted 49 hr of focused participant observation with family members. “Focused” observations entailed spending time with a specific family member and accompanying them while they were at the LTC home. These observations took place after interviews with participating family members. We also conducted 90 hr of general observations, which entailed spending time in common areas (e.g., dining rooms, hallways, outdoor garden areas). During observations, team members focused on patterns of interactions among individuals, verbal and nonverbal communications, and the role of the physical space in relation to these interactions. Observations were written up immediately as field jottings and later expanded into detailed field notes.

Data Analysis

Data analysis and interpretation focused on inductive, thematic coding with the aim of generating a rich description of ways in which family members contribute to the care of residents who are not their relative. J. Baumbusch, a doctoral-prepared nurse researcher with expertise in doing critical ethnography (Baumbusch, 2011), two postdoctoral fellows with expertise in LTC, a graduate-prepared nurse, and two graduate research trainees in gerontology and social work conducted the analysis. The initial step of data management entailed entering the interview transcripts, field notes, and memos into NVivo11, a qualitative software program. Guided by Jenkins and colleagues (2018) approach to multisite analysis, we developed the initial codebook based on Site 1. With the addition of each site, we reviewed the codes and expanded the codebook as necessary.

The specific code used for the analysis that is the focus of this paper was “taking care of other residents.” The author group for this paper then further analyzed these data. We examined all examples of the ways that family members were contributing to the care of residents who were not their relatives. After categorizing the examples, we developed the subthemes that reflected the umbrella theme presented in the findings.

Rigor

In keeping with ethnographic research, throughout the study, we engaged in a reflexive process in which we continually reflected upon and documented our positionality and responses as researchers (Jootun et al., 2009). Following participant observations, research team members completed memo writing, which involved writing reflective notes. We also kept an audit trail, which entailed writing analytic memos and recording minutes of research meetings. Then, as part of collective data analysis, we reviewed these notes. We employed triangulation, which involved using multiple data collection strategies across three sites and having multiple researchers involved in the process (Noble & Heale, 2019).

Results

The overarching theme was “filling in.” The 11 family members who were involved in caring for residents who were not their relative were frequently present at the LTC home and had the opportunity to observe other residents, learn their routines, and get to know them. The subthemes reflect the key ways that these family members were “filling in”: responding to resident’s needs, supporting staff to respond to resident needs, and filling in for residents’ families.

Responding to Resident’s Needs

One way that family members were “filling in” was by responding to residents when they expressed unmet needs in common spaces, as observed in this interaction:

R0120 asked FM0110, “How do I get out of [common area] by myself?” FM0110 said, “You’ll be taken back by the woman in green” referring to [care aide] [FM0110, 78-year-old sister, field note].

Because the resident’s needs were not met in a timely manner, the field note continues:

Very soon, however, the resident began trying to initiate leaving on their own, which presented a safety risk. At that point, the family member directly asked staff to help the resident. R0120 started pushing her feet against the floor and was in danger of moving backwards into the pillar behind her and FM0110 goes up to Residential Care Aide 7 and said, “Are you with her? She wants to leave.” Residential Care Aide 7 went over and grabbed R0120’s chair and helped her to leave.

In another example within the same field note, the researcher wrote:

Some requests from residents were very practical, “Where’s the bathroom?” R0112 starts undoing her jeans, revealing white underpants. FM0103 (70-year-old wife) points at a door to a general washroom a few feet away: “Right there, you made it!” R0112 echoes, “I made it!” and goes inside the washroom, closing the door.

Another need fulfilled by family members was addressing residents’ feelings of loneliness and isolation. “I think a lot of them are quite lonely in there. We do chat with some of the other ladies. They always seem happy to see us” (Interview: FM0301, 74-year-old son). An aspect of this activity also involved facilitating social interactions among residents. The communal dining area was a common place for facilitating interactions, as FM0301 went on to describe, “We have a nice chat with a couple of the other residents there. One next to her is 101, he’s 101! He’s a character and we sit and chat with him. He always tells me something. He sits at the same table with her.”

Many of these family members had expertise caring for a person living with dementia from their experiences with their relative. This expertise helped them to navigate situations with other residents and, at times, role model person-centered care for staff.

There was one lady upstairs and she would be jabbering and I went over to her and [staff] said, “Oh, she’s a bit aggressive.” And I said, “Okay, that’s okay.” So I got down on her level and she said, “Mama, Mama.” You know, she was calling me Mama. And I held her hand and the nurses said, “Well, she might get aggressive.” And I said, “No, she won’t. She’s okay with me.” And so I … when I go upstairs, every time I see her and she’s in the same corner and she’s holding onto me [FM0206, 60-year-old daughter].

These family members acknowledged the personhood of each resident, as FM0206 went on to share “I make a special effort to know everybody’s name on the floor where my father is, because each one of those people are … they’re a person.”

Another a narrative shared by FM0306 (68-year-old daughter) about a situation that involved a resident known for having responsive behaviors. She began the reflection by explaining her knowledge of the resident who was not her relative and the activity she was starting with her mother:

[Resident] was in that mood when I was in. I got mom’s book. It was just after lunch. And I said, “Let’s go look outside and see what’s going on out there.” So I got her moved over there.

It is clear that the participant is aware of the safety risk potentially posed by the resident, whose mood she has picked up on and yet she still engages with him when approached:

And then down came [resident] and I could see he was over at [another resident’s] chair again and I just got up and I went over and I said, “[Resident], are you okay?” And he said, “Yeah.” I said, “Are you all right?” And he said, “Yeah, yeah.” And then he just looked up to me and he said, “Well, I don’t know what’s happening. I don’t know what’s going on. I don’t know, I don’t know.” So I just put my hand on his shoulder and I said, “You know what? Everybody here loves you.” And he looked at me. I said, “And you’re safe here. You’re safe here.” He said, “Thank you.”

The family member effectively diffused the situation by acknowledging and addressing the resident’s concerns. She then invited him into the activity with her and her mother:

He followed me then, when I went back to mom. I distracted him enough, he was following me now. And he came and put his chair kind of just onto the side of me and put his hand on my back and he sat there and listened for two chapters of the story.

This example illustrates the type of care that a family member can extend to a resident who is not their relative. She had in-depth knowledge of his behavioral cues from regular visits. And, importantly, she acknowledged his personhood and invited him to be part of meaningful activity (listening to her read), actions that de-escalated a potentially unsafe situation.

Supporting Staff to Meet Residents’ Needs

Family members were also “filling in” by taking on staff members’ tasks when necessary. These activities particularly occurred during social times or as collective group activities. In this field note, FM0304 (55-year-old daughter) shared:

[FM0304] explains that staff often don’t have time at 2 p.m. to distribute the cookies for afternoon snack and so if she’s here, she’ll do it. As if to illustrate, she gets up from the table, walks back over to the servery, grabs the tray of cookies and takes it around the dining room to the few residents still sitting at their table. She returns the tray to the servery and then comes back to the table and sits down again, next to her mum.

Some family members also created activities that engaged a group of residents. For example, FM0323 (60-year-old daughter) started gardening at her mother’s LTC home. She described how the garden area had been largely ignored:

When I arrived that garden area—the bench was upside down, there was a pile of dirt in that area and no one had utilized that garden area probably for more than almost a year or two I was told. So [relative] and I persisted because we are gardeners and we cleaned out all the weeds and put all the plants in.

Once the family had cleaned up the garden area, she shared how the residents became involved:

A couple of weeks ago, I had a bunch of [residents] out, about, I guess four or five of them. And we planted all the little seedlings we had planted inside a couple of months earlier. We took them outside and planted them and did all of that.

She further added how the family had organized an ice cream social with the gardening group:

We brought ice cream for them, so it was like an ice cream social watching the gardener do things. And by the time … [FM0323b] was there helping and everything else, which I always totally appreciate, there was about fourteen people outside in the garden, enjoying the outdoors, the ice cream and the atmosphere.

This example illustrates how family members can bring their skills (e.g., gardening) to create a shared activity for a group of residents.

Family members also ensured that broader care home activities were inclusive of residents, even those who might not be actively involved or engaged. For example, a field note from a general participant observation on Easter stated:

[Daughter] who had been playing cards with her mom had finished. She stood up and came into the lounge area and started to help distribute some of the eggs. She woke a slightly dozy resident up to give her a chocolate egg. The resident seemed confused and [Daughter] said “It’s Easter today dear”. The resident looked down at the egg and the woman told her “it’s chocolate.”

In this activity, a family member was making sure that residents did not miss out on a treat because they were sleeping. Music was another shared activity initiated by family members. FM0206 said:

I’ll play the piano sometimes. Not a lot because I don’t like to interfere with their structure, but if the piano’s there and the ladies are listening in. Then [resident] at the front she always says, “‘Oh, they love the music. Play some more.’”

In this situation, the family member carefully pointed out that she didn’t want to disrupt the structured schedule created by staff at the LTC home.

Filling in for Other Families

The third way family members were “filling in” was to supplement or replace absent or nonexistent family connections for other residents. FM0101 (48-year-old daughter) described the presence of families on the unit where her mother lives, “There’s only four of us that show up on second floor. Everyone else, like, you barely see. I feed the lady next to my mum.” Another family member shared “There’s a lot of people, a lot of people that I’ve noticed in here that don’t have visitors, and I try to kind of bring about a little happiness to them” (FM0126, 52-year-old daughter). This family member went on to share about her relationship with one of the residents, “I’ve sort of adopted one lady that reminds me of my grandma, [voice shakes] and she has a son but he never comes to visit her. It’s interesting; on Mother’s Day I came—she loves the dogs, so actually we bring the dogs for her—and one care worker thought that she was my mom.”

Another key role for these family members was taking up collective advocacy on behalf of other families and residents in the form of participating on Family Councils. An example of a successful Family Council initiative was described by FM0306 “I mean I advocated long and hard to get an activity box on those floors so that the staff would have some tools to use with people who were agitated.” These kinds of initiatives were often ascribed to efforts by the Family Council, another important way that these family members contributed to the care of residents who were not their relatives and acted on behalf of all families.

Discussion and Implications

This research provides an expanded view of family involvement in LTC homes, capturing the range of ways in which families contribute to the care of residents who are not their relatives. The findings also illustrate how this type of involvement is mediated through the informal/formal power relations of care work between family members and staff in institutional settings such as LTC homes. Researchers have previously noted that the failing to acknowledge family contributions to care in most formal documents such as policies and handbooks (Barken et al., 2017) shifts power to those whose roles in these settings are formalized. Structural changes through legislation and policy that address these power inequities are needed. While formal policies and legislation exist for some aspects of family involvement such as Family Councils, they do not address individual relationships between family members and residents who are not their relatives. As well, the main theme of “Filling in” reflects the broader issues in LTC homes that lend themselves to this situation, that is, understaffing and underresourcing (Barken et al., 2018). These underresourcing issues were particularly evident in the subtheme related to “filling in” for staff.

As demonstrated in this study, family members who are experienced caregivers for a person living with dementia have expertise in person-centered care approaches that, at times, exceed that of staff. Palmer (2013) described a role for family members in LTC homes as “preserving personhood” for their relatives with dementia. This role entailed supporting personhood through ensuring an individual’s needs were met, sharing stories, and facilitating their participation in meaningful activities. It also involved observing ways that staff did or did not also preserve personhood. Findings from our study extend the role of family members to also recognizing and attending to the personhood of residents who are not relatives in the LTC home.

In contributing to the care of residents who were not their relatives, some participants noted the absence of family contacts for some residents. In the literature, residents who do not have family contacts and lack decision-making capacity are called “unbefriended.” These residents tend to be more socially isolated, they may lack financial resources, and aspects of their care plan may be incomplete, such as end-of-life planning (Chamberlain et al., 2020). There are also residents who have family contacts, but they do not visit frequently. In our study, family members extended aspects of their roles with their own relatives to other residents, including: creating meaningful activities, advocating for their unmet needs to be addressed, and providing social connections. Family members also viewed their contributions to Family Councils as a way of improving care for all residents through collective advocacy. Our study suggests that an important area for future inquiries is to index these activities as part of articulating the roles of families in the LTC context.

The social construction of family members as “visitors” in LTC (Holmgren et al., 2013), despite their substantial and essential contributions to care for all residents, set the stage for the restrictions on family presence through public health measures during the COVID-19 pandemic (Cooke et al., 2023). In the absence of families during the pandemic, researchers demonstrated serious issues in quality of care, particularly for residents without personal family contacts. In a study conducted in Ontario, Canada, researchers found that residents without family contacts had a 35% greater excess mortality rate. They may also have experience more interpersonal isolation, loneliness, and social exclusion, which are also risks for premature mortality (Savage et al., 2022). Our study reinforces the need to ensure that family presence in LTC homes is articulated in policies given their essential role in the daily lives of all residents, not just their relatives.

There were limitations in this study. This research involved ethnographic methods conducted in public spaces, which may have deterred some individuals from participating. Family members participated voluntarily and knowingly in the interviews and observations. These methods may have contributed to bias in terms of who chose to participate in the study. All the study sites were Eurocentric and therefore we did not access culturally specific care sites where there may be different approaches to family involvement in the care of residents who are not their relatives.

This study has implications for education, research, and policy. Given the capabilities of some family members in providing person-centered care, there are opportunities to create collaborative education programs that bring together family members and staff. These programs could acknowledge the skills of both “informal” and “formal” care providers while building expertise in this area among those who need skill development. Researchers who are examining family involvement in LTC settings ought to include questions about ways in which family members contribute to the care of residents who are not their relatives so that we can better understand this phenomenon and develop this area of inquiry. In terms of policy, family presence needs formalization to recognize their essential role in LTC homes. Whilst family members have the right to choose their optimal level of involvement, such policies should also address issues such as the resident’s right to choose to include other resident’s family members in their daily lives as well as privacy issues that accompany these choices.

In conclusion, the findings of this study serve to expand our understanding of the role of families in LTC homes. Family members who are experienced caregivers bring a unique set of skills when their relative moves into a care home and are well-positioned to support residents who are not their relatives. Structural issues that impede family presence and family contributions to care need to be addressed to ensure that those residents who do not have active involvement from their families still benefit from this essential source of care in LTC homes.

Funding

Canadian Institutes of Health Research Funding Reference Number: 130542.

Conflict of Interest

None.

Data Availability

Data are available upon reasonable request to the corresponding author. This study is not preregistered.

Author Contributions

Jennifer Baumbusch (Conceptualization [Lead], Data curation [Equal], Formal analysis [Lead], Funding acquisition [Lead], Investigation [Lead], Methodology [Lead], Project administration [Lead], Resources [Lead], Software [Lead], Supervision [Lead], Validation [Lead], Writing – original draft [Lead]), Heather Cooke (Conceptualization [Supporting], Data curation [Equal], Formal analysis [Supporting], Investigation [Equal], Writing – review & editing [Lead]), and Isabel Sloan Yip (Data curation [Equal], Formal analysis [Lead], Investigation [Supporting], Writing – review & editing [Supporting])