“It’s Going to be Different for Everyone”: Negotiating Quality of Life and Care Priorities Within Care Convoys

Abstract

Objective:

The overall goal of this analysis was to learn about residents’ quality of life and quality of care in assisted living over time and from multiple viewpoints within support networks.

Method:

This grounded theory analysis examined qualitative data collected from 50 residents and 169 of their care network members followed over two consecutive 2-year periods in 8 diverse settings.

Results:

Quality involved a dynamic process of “negotiating priorities,” which refers to working out what is most important for residents’ quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because quality is personal, subjective, dynamic, and situational.

Discussion:

Communication and collaboration among formal and informal care partners are vital to residents’ ability to age in place with a high quality of life and quality care.

A Convoy Approach to Understanding Quality of Life and Care: Negotiating Priorities

The concepts of quality of life and quality of care have been used extensively in long-term care (LTC), primarily nursing homes, as shorthand for the constellation of metrics used to evaluate and assess facilities. Research using these metrics privileges quality of care measures, the provision of care, the conditions of the environment, and the incidence of deficiency. Although methodological and measurement research is useful for providing a global and comparative examination of quality, Kane (2003) notes this emphasis on metrics fails to encourage nursing homes to focus on quality of life, particularly as experienced by LTC residents. Further, according to Kane, “nursing homes are plagued by low expectations for what providers can do to improve quality of life for residents” (2003; p.35). Some scholars have sought to rectify this by developing different, more comprehensive metrics for quality of life that incorporate multiple perspectives or address distinct populations, such as residents living with dementia (Crespo et al., 2013; Johs-Artisensi et al., 2020) or by emphasizing residents’ self-reported quality of life (Conney et al., 2009; Kehyayan et al., 2016; McCabe et al., 2021; Mitchell & Kemp, 2000). Others moved away from metrics altogether to institute culture change in LTC by centering discussions of quality around the resident. Yet comprehensive reviews of this research suggest that evaluations of person-centered care (PCC) and quality remain underdeveloped (Duan et al., 2020; Sion et al., 2020).

Although assisted living (AL) is an increasingly common choice for older adults because the perception that AL will provide a higher quality of life than nursing homes (Falzarano et al., 2020; Silver et al., 2018), research on quality in AL has received less attention. The AL industry promotes autonomy and choice as central to the home-like supportive residential environment. However, unlike nursing homes, AL communities are not federally regulated resulting in less oversight regarding quality metrics. AL communities are mostly fee-for-service and many rely on outside formal and informal care to meet resident needs (Kemp, 2021). Additionally, there is considerable variation across and within states. For example, in Georgia, the location of this research, AL is divided into two categories – personal care homes and AL communities – with each providing different services based on licensure.

Prior research on AL has focused on defining and measuring quality and identifying factors influencing quality; however, few studies have included the perspective of multiple stakeholders in defining quality in AL, especially over time. Ball and colleagues (2000, p. 311) characterized quality of life in AL as a “subjective, complex, multidimensional concept with interlocking and overlapping domains.” Similarly, Shippee et al.’s (2019) scoping review identified satisfaction and quality of life as vital measures of AL quality, in addition to other domains (e.g., safety, staffing, resident health outcomes), particularly as residents in AL communities become increasingly frail with complex care needs. Morgan et al.’s (2011) research on quality of life from the AL residents’ perspective found, “opinions about quality vary widely” and can vary from other groups, such as family or staff (p.2). They argue that this perspective is “dynamic” and can change over time creating a “quality balance” between resident needs and the AL profile.

Derived from a synthesis of conceptual, methodological, and empirical work, our Convoys of Care Model (Kemp et al., 2013) offers a promising framework for a holistic understanding quality and its embeddedness in care relationships, settings, and systems. This model extends Kahn and Antonucci’s (1980) seminal “Convoy Model of Social Relations,” which posits that over the life course individuals are surrounded by an evolving network of persons with whom they have close personal relations and exchange support. With a focus on understanding the intersection of formal and informal care, our model incorporates all those involved supporting individuals receiving long-term care, including those who are paid to provide care and may not have close personal relationships with the care recipient (Kemp et al., 2018; Kemp et al., 2013). Our previous AL work shows that residents typically are embedded in care convoys (i.e., networks) comprised of a dynamic collection of formal and informal care partners that have important implications for residents’ quality of life and care (Kemp, Ball & Perkins, 2013). Our recent in-depth longitudinal research (Kemp et al., 2018) found that care convoys in AL vary by resident and over time in composition, size, and function. Most, but not all residents, had informal care partners, including traditional (children and spouses) and non-traditional (other family, friends, and acquaintances) contributors.

The goal of this analysis is to learn about residents’ quality of life and quality of care in AL over time and from multiple viewpoints within care convoys. Our aims are to: 1) understand perspectives on quality of life and care in AL from the perspective of multiple convoy members; and 2) identify the factors that influence stakeholders’ perspectives and shape residents’ experiences of quality.

Method

“Convoys of Care,” a five-year longitudinal qualitative study, was set in eight care communities (see Table 1), purposively selected to provide maximum variation (Patton, 2015) in ownership, capacity, licensing, location, resident profile, resources, and availability of memory care. Seven were licensed as personal care homes and one as an AL community, which can provide higher levels of care in the state of Georgia. Monthly fees across the communities ranged from as low as $1,000/month at Camelia’s Cottage to a high of $5,505/month at Feld House. Three communities had separate memory care units. Access was granted by each executive directors’ written consent. The study was approved by Georgia State University’s Institutional Review Board. We use pseudonyms for all sites and individuals for anonymity.

Table 1.

Select Community, Resident Support Needs, and Health Characteristics by Setting

	Data Collection Period 2013–2015				Data Collection Period 2016–2018
	Hillside	Feld House	Garden House	Oakridge Manor	Camellia’s Cottage	Thames Place	Magnolia Gardens	Riverview Estates
Capacity	11	46	54	99	2	12	19	48
Ownership	Private	Foundation	Private	Corporate	Private	Private	Private	Corporate
Location	Rural	Suburban	Small town	Urban	Urban	Urban	Urban	Suburban
Resident Race/Culture	All White	All White/ Jewish	Mostly White	All African American	African American	African American and White	African American and White	Mostly White
# of Focal Residentsa	3	10	5	10	1	4	5	12
Help with ≥ 3 ADLs	2	7	3	4	0	1	2	7
Help with ≥ 3 IADLs	2	10	5	5	0	3	2	10
Help with Medication	3	9	4	5	0	3	2	11
Uses a walker	2	8	3	4	1	0	1	5
Uses a wheelchair	1	5	1	4	1	0	0	4
Average Number of Comorbiditiesb	6.6	7	4.4	5.5	4	5.25	4.2	5.8
Range of Comorbidities	6–8	5–10	2–7	4–7	4–4	4–7	3–7	1–10

^aHealth characteristics listed here only relate to these focal residents and not to all residents in each community.

^bComorbidities were determined and calculated based on the most common chronic conditions in AL by Caffery et al. (2012)

Participants

Study participants included 50 residents and 169 of their care convoy members, including 91 informal caregivers, 49 AL administrative and care staff, and 29 formal external care partners. We interviewed approximately two (M = 1.82; SD = 1.42) informal participants per resident (range=0–5). Residents ranged in age from 57–96 (M = 82; SD = 11) and had a range of support needs and health conditions (Table 1). Most were female (58%), white (68%), and widowed (58%). Forty percent of residents had a high school diploma and nearly one quarter (22%) had a post-graduate degree.

Study Design and Data Collection

Between 2013 and 2018, trained gerontologists and sociologists, spent two years in each study site, collecting data in four communities simultaneously. Our research was guided by a grounded theory approach (GTM) (Corbin & Strauss, 2015), involving simultaneous data collection, hypothesis generation, and analysis. Consistent with this approach, analysis builds cumulatively on our previous analyses (Kemp et al., 2018; Kemp et al., 2020; Morgan et al., 2021).

Data collection involved participant observation, in-depth semi-structured interviews, and review of residents’ health records. Participant observation was ongoing and involved regular visits and conversations with residents, staff, and any visitors to learn about daily life, care arrangements, and routines, including any changes. Semi-structured interviewing began with executive directors to learn about residents, staff, organizational characteristics, and care environment.

During the first month in each setting we began recruiting, interviewing, and following residents and their convoys members. Initially, we recruited residents for variation in characteristics research suggested would create variation in care arrangements and experiences (e.g. marital status, age, race). As the study progressed, we used theoretical sampling to recruit residents who provided insight into different care scenarios and arrangements. Thirty-six resident participants had the capacity to consent and engage in semi-structured interviews; we detail recruitment, consent and assent procedures for the sample, including those unable to consent, elsewhere (Kemp et al., 2017). Briefly, we obtained written consent for all participants and as consent is an ongoing process, sought assent before any researcher-participant interaction (for details, see Kemp et al., 2016; 2019).

Resident interviews inquired about their background, care needs, arrangements, and experiences. Care partner interviews considered their care roles and relationships. All interviewees were asked to reflect on their definitions of quality of life and quality of care, including what was most important. Conducted one time with each participant, these semi-structured interviews were audio-recorded and transcribed verbatim.

We followed residents and care convoys members, connecting with them using their preferred contact mode(s) as established following the interview: in-person, phone, email, or text, for two years or until the resident died (n=9) or was discharged or moved out (n=14). These contact points facilitated member-checking, which helped to verify or refine ongoing hypothesis generation, recognize and correct researcher biases, and alert researchers to resident, convoy member, and care community change. Overall, the team made 1,561 field visits with 3,738 observation hours. Researchers documented observations from visits and interviews in detailed fieldnotes, including information about resident and care partner quality of life and care priorities.

Data Analysis

We used the qualitative analytic program NVivo 11 to store and capture our coding of fieldnote and interview data. Following Corbin & Strauss’ (2015) GTM conventions, we used a three-pronged coding procedure beginning with line-by-line “open coding” of all data pertaining to quality of life and quality of care. Initial codes, included, for example, “physical well-being,” “being safe,” “timely care,” “relationships and engagement,” “quality dilemma,” and “quality conundrum.” Next, we used axial coding to connect categories and link data, indicating quality processes, conditions, contexts, and consequences. In this stage of analysis, we found, for instance, that among residents with higher care needs because of limited cognitive or physical function, quality of care tended to assume a larger dimension of quality of life. We found that what matters most for quality of life and care is variable and influenced by resident and care partner characteristics, relationships, dynamics as well as care community and regulatory contexts. A 10-person team diverse in age and background, including seven graduate-level field researchers and led by the authors, engaged in initial and axial coding. Alongside coding, each coder memoed about the quality data and analysis. Throughout data collection and coding the team met regularly to compare, discuss biases, and resolve differences. In the final stage, the authors collaborated to review existing codes and engaged in selective coding to identify “negotiating priorities” as the central story line explaining how quality of life and care are defined and experienced over time within and across care convoys.

Findings

“Negotiating Priorities”

Examining quality of life and of care from multiple perspectives within and across care networks over time shows that far from static or universal, quality involves a dynamic process of negotiating and prioritizing preferences. “Negotiating priorities,” our core category, refers to the process of working out what is most important for residents’ quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because, as our analysis confirms, quality is personal, subjective, dynamic, and situational. Negotiating priorities takes place within the context of the care setting and relationships and is bidirectional. Residents care routines and daily lives shape and are shaped by the negotiation of priorities as illustrated in Figure 1. The son of a Garden House resident explained, quality, “is one of those definitions that’s almost like an abstract because it’s going to be different for everybody. . .In my mind, it’s pretty simple. If I’m happy with it, [then] it’s [good] quality. . .If Dad’s happy, that’s quality.” Despite this litmus test, in practice, quality was exceedingly complex and not abstract. Resident and care partner preferences often changed over time in response to shifting individual, convoy, and AL community contexts.

Figure 1.

Negotiating Priorities and Potential Quality Outcomes

Given resident and care partner heterogeneity and the range of convoy member roles and responsibilities, participants’ characterizations of what was most important for quality of life and care varied. Participants routinely spoke about quality of care influencing quality of life and visa-versa. Such interdependence was especially strong when care needs escalated or were unmet. Sometimes they were viewed as one in the same, especially by care partners focused on meeting resident care needs and by certain residents, including this Oakridge Manor resident who explained: “See[ing] that my basic needs are met. That’s food, drink, and shelter. Managed health, which is cleanliness and medicine, balanced meals, safe facilities, caring people. When I said caring, I mean concerned about you as an individual.”

Quality of Life

Alongside quality of care, there were discernable dimensions of quality of life. As a collective, residents and their care partners identified the following four additional phenomena as central to residents’ quality of life: 1) well-being; 2) autonomy and independence; 3) optimal engagement; and 4) meal experiences. Regardless of stakeholder type, most participants identified multiple domains of quality of life as being important; many quotes highlight overlap across quality domains. Oakridge Manor’s executive director said, for example, “It’s really a mixture,” adding, “The most important attribute for residents’ quality of life is great medical care coupled with great dining, to accommodate the special diets, and great engagement.” Below, ‘we discuss each domain separately.

Well-being.

A multi-dimensional construct, well-being encompassed psychological, including emotional, well-being as well as social, physical, and spiritual wellness, and was central. One resident from Thames Place explained that “having no problems” contributed to her quality of life, “Right now I can take care of myself. I can wash myself. I can go for a walk if I want to.” Discussing what she saw as most important for resident quality of life, a direct care worker at Oakridge Manor summarized, “I think their physical needs, of course, I think their emotional needs, their spiritual needs, and that need to be loved. Those are so important.” The daughter of a male resident of Garden House also noted that global well-being was not merely taking care of: “bodily needs, but also attending to the spirit of the person and the mind. . . they’re all intertwined deeply and I don’t think you can just take care of one without the other.” Family members and staff frequently identified resident happiness as a marker of quality of life.

A long-time care worker from Garden House noted that most residents face challenges to their physical and emotional well-being, “Their quality of life is their health. It does bother them when they have aches and pains.” She believed in staff being there for residents and if needed, become their “eyes” and “ears” to compensate for decline and elevate well-being. This labor was especially important given that many residents endured physical and emotional pain and loss.

Autonomy and independence.

For residents with greater cognitive and physical function, being able to take care of themselves as much as possible was especially paramount to quality of life, signaling autonomy and independence, contributing to “not being a burden,” and enhancing all aspects of well-being. While talking about what mattered most to her quality of life, this Feld House resident said, “I have been working on [taking care of myself]. Such as brushing my teeth, and I brush my own hair when I don’t go to the beauty parlor.” For certain residents, autonomy and independence meant doing for and keeping to themselves and “not having anybody” over their “shoulder.”

Even residents with limited self-care abilities wanted as much control and choice as possible. For example, a Riverview Estates resident, who had mental health diagnoses, vision problems, used a wheelchair, and was dependent on others for all activities of daily living and instrumental activities of daily living, viewed his quality of life as shaped by having a sense of control. In his words, what is most important is the ability to “do as I please,” which meant as his ex-wife noted, just “stay[ing] in his room, in his recliner, his lift chair.” However, he lamented, “The crazy people, they get me up at 6:00” when breakfast is at 8:00 am, but “it doesn’t do any good” to protest, implying limits to control for residents who were not self-reliant.

Optimal engagement.

Many residents and care partners emphasized the importance of having optimal levels of social engagement and inclusion, including relationships and interactions with staff, in some cases, co-residents, and with family and friends. What was “optimal,” depended on resident preferences. This female resident described quality of life: “[It’s] the fact that I am able to see my family. Feld House celebrates great holidays; they have good games and so forth. I have all the conveniences and the staff is very likable.” Many residents aspired to see family more frequently but understood their limited availability.

Families emphasized engagement, including the daughter of a Garden House resident, who said, “they need to be engaged. . .they need to feel valuable, or like they have something to contribute or give.” Her father’s central role in the community’s music program was a source of considerable meaning. Meanwhile, a Feld House resident’s sister also emphasized, “for him to feel a part of something and to feel happiness” was most important.

Sometimes lack of optimal engagement underscored its importance. One male resident from Riverview Estates was younger than most residents and highly social. His cousin explained the centrality of and challenges with social connections:

There has been a lot of change in the people that work there, but he would get very close to the workers, to the previous nursing director, to the previous director. He would get close to some of the family. . .more so than [residents] because he doesn’t really have anything in common with them. . .

As this passage implies, turnover in the community disrupted relationships as did co-resident commonality and availability. A Feld House resident said that her life would be improved by having “male companionship.” Yet, there were few co-resident candidates.

For some, optimal engagement meant limited interactions and integration into community life. One Feld House resident, a widow with a history of depression and anxiety, noted ties between wanting to be alone and her physical and emotional well-being: “When I am in my apartment or my room, I feel more comfortable than when I am sitting among other people.”

Food/meals.

All communities provide three meals per day. Every participant type highlighted the importance of food and mealtimes. For providers, food was critical, but also challenging because of the implications for health and well-being and pleasing residents with diverse tastes. The owner of Garden House noted, “We always advertise when people come in that we can, you know, deal with preference. There are some people that just are picky eaters. Then there’s some that have special diets that needs to be addressed.” A staff member from Oakridge Manor, after noting the high levels of hypertension and diabetes among residents, identified “nutrition and staying active” as most important for quality of life, underscoring the need to “feed them well.”

Residents had mixed reviews on food quality, but most felt it influenced quality of life. Some were happy, describing the food as “good,” including a Garden House resident who gained much-needed weight. Her grandson remarked on her thriving: “I think that the fact that the food is prepared and it’s good and she’s eating, that’s helped her out.” A male resident from Riverview Estates said, “Well first off, the meals are regular and they are good.” Other residents, however, felt that better tasting meals would improve quality of life. The daughter of one Garden House resident explained, “Well, I know the food thing has been—that’s probably been his only complaint, is the food issue. . .he likes good food, you know? He also gets that in a large group setting like that, you have to be realistic.”

Some residents, including the Garden House resident described above who disliked meals, kept food accessible, which allowed them to remain in their room if they preferred not to eat in the dining room or if they wanted to eat outside of mealtimes. This same Garden House resident enjoyed having some control food:

At 3:00 or 4:00 in the morning, I’ll get up and make myself some instant oatmeal . . . the kids got me one of these Keurig coffee machines at Christmas, and so I’ll either make tea or coffee for myself. Then I usually have some kind of fruit . . .

Yet, not all residents had the same access or ability to eat what and when they desired.

Quality of Care

Participants in this study articulated a cohesive message quality of care dimensions, but sometimes their messages differed in terms of priorities. Quality of care involved: 1) meeting care needs; 2) care delivery; 3) care relationships; and 4) safety. Quality of care was not singular. Rather several dimensions, as our data illustrate, overlapped.

Meeting care needs.

Residents and their care partners talked about the importance of meeting care needs and preferences in all care domains, underscoring the importance of achieving care goals. Residents spoke about the importance of meeting care needs stressing, “they feed me” and “they keep me clean” (male resident, Riverview Estates) and “if I ask for something, they can do it for me” (female resident, Camellia’s Cottage). For many residents meeting care needs also meant not having everything done for them. As a female resident from Garden House explained, quality care means staff, “help when I need [and] let me do what I can.” Meanwhile, the daughter of a female Hillside resident with dementia noted, “Quality care to me is keeping them clean, comfortable, as content as possible and providing a pleasant environment for them to live in.” A hospice worker at Hillside reiterated this stating: “hygiene is always the biggest [concern] in my opinion, keeping them clean. We don’t know anybody wanna be dirty.” Administrators and care workers also emphasized meeting care needs.

Care delivery.

Quality of care involved timely care delivered with “compassion,” “respect,” “dignity,” and “sincerity.” Perhaps because of the social model of care and philosophy, administrators routinely emphasized care delivery. One long-time provider from Garden House noted, of quality, “I feel like hospitality is a big part of this type of business.” The Hillside executive director discussed the importance of residents’ rights as part of care delivery:

Good quality of care is just the overall the experience with the care that we provide for ‘em. . . a big thing is the residents’ rights. Residents’ rights include everything from (preventing) neglect to abuse to everything. As long as that’s been upheld and that they’re being cared for and loved for, it all falls in place.

Residents emphasized care delivery as essential for quality care, including a female resident from Feld House who explained:

Someone coming in first of all with a pleasant smile. They are neat and clean looking and seem to have my best interest at heart. And just whatever they do for me, do it in a gentle manner, a loving manner. Not a sympathetic or sorry manner, like, “Oh gee it is so sad you are this, that and the other.” A bit of encouragement and to tell me I am doing well.

Care workers stressed basic care and echoed the importance of encouragement as part of care delivery, including one from Thames Place who said, “Keeping ‘em clean. . . Comb their hair. If they get dressed up, say ‘Oh, you look so pretty. Your hair is so pretty.’ Encouragement. You have to encourage and try to get ‘em out of that down mood.” At times, the ability to deliver care was strained as shown in this Riverview Estates’ fieldnote:

There was a weird vibe coming from the staff today. They all seemed tired and irritated. I [the researcher] was extremely shocked with [staff member’s] behavior toward [resident]. I felt it was very childish and mean. I think the staff are becoming very overworked and burned out.

Care relationships.

Care delivery largely was related to care relationships, which all key stakeholders identified as essential to quality care. Many residents valued relationships with staff and frequently made efforts to cultivate connections, including a male Oakridge Manor resident:

I call ‘em my “young ladies,” who take such good care of me. Each one wanting to outdo the other when it comes to doing for me. That seems to be important to me. I give them the right privilege to pick out whatever they want me to wear on a given day.

Administrators discussed the importance of a “caring spirit” or “heart” among staff including the Garden House administrator who explained, “I think to have a caregiver that genuinely cares, that is not somebody that’s just here doing a job.” Most staff agreed, including a care worker from Thames Place who emphasized, “For good care you have to be understanding. You have to know each person.” Many staff emphasized knowing residents, “meeting them where they are at,” and being empathetic. A Feld House care worker explained, “You can’t just come in and bathe someone and make a bed and sit and wait. Being with that person and trying to see that they live a life.”

Family members, including the daughter of a Riverview Estates married couple, both with dementia, emphasized care relationships. Like others, she highlighted familiarity and a personalized and relational approach:

[Residents] are not just somebody who lives here or somebody [staff] have to take care of. They are a person; mom and dad are people to them. They know who they are, they know what they like, they know their mannerisms, they know they can kid around with them. And I am sure there are other residents they can’t kid around with so that they know each one as an individual.

Having additional time to spend with and get to know residents, of course, depended on staffing practices, workload, and resident need.

Safety/security.

A secure and supportive environment also was stressed as essential to quality care. For some residents the security of 24-hour oversight and not being alone increased their overall well-being. For instance, this male Riverview Estates resident with a history of passing out said he was pleased with his move to AL: “I am safe here. I am safe from myself here.” Given that most residents relocated to AL because they could no longer live safely alone, family members frequently emphasized security in the form of oversight, noting “they need to feel safe.” Family of frail residents and those at risk of falling, injuring themselves, or eloping were especially attuned to safety. One daughter said of her father, a Riverview Estates resident with dementia, “Our main concern was to have him in a safe environment [and] I think he gets the care, security and safety he needs.” Care workers and administrators also spoke about safety, but drew attention to feelings of comfort. One care worker from Oakridge Manor said for example, “Security. If they feel secure and they feel at home and they feel love and they feel needed, then I think that’s the highest for me.” Care partners united in emphasizing safety and security. Not all residents prioritized it equally.

Quality Dilemmas

In the process of negotiating priorities, quality domains frequently competed. Within convoys, residents’ and their care partners’ priorities of what was most important sometimes were conflicted. We labeled such instances, “quality dilemmas.” One common dilemma arose when residents’ desires for independence and autonomy competed with convoy members’ preferences for maximizing residents’ safety. Most residents wanted to feel safe, but not at the expense of autonomy and independence, reinforcing the overlap and potential conflict between quality of care and of life. Conflict arose when residents, family members, and staff had different ideas of what to prioritize. Family often wanted their loved one to be “happy” but this was rarely mentioned in discussion of quality by the residents themselves. A social worker from Thames Place explained, “If the family members and the provider” have “very different views of what the best thing” is, that gets “really sticky.” He went on to say, “The family, of course, would take offense because that implies they don’t know what’s best for their loved one.”

When priorities failed to align, power relations were inherent in the process of “negotiating priorities” and among the most influential factors determining how priorities were worked out, including in quality dilemmas. A Thames Place resident with dementia, diabetes, hypertension frequently resisted care and self-care prompts. A staff member noted, “He’s set in his own ways. Why I’m saying it’s difficult, because he wouldn’t let you take care of him or pay attention to his feet unless he’s going to the doctor. Personal hygiene is starting to fall apart.” The provider and staff frequently called his informal support for assistance in encouraging self-care. This situation was fluid marked by intermittent successes. Sometimes he prevailed; other times he cooperated.

Residents with dementia frequently refused care exercising their autonomy. One Thames Place care worker explained, “If they refuse [care], you cannot force anybody to do anything they don’t want to do because they have their rights.” Staff sometimes grew concerned when family members emphasized their priorities rather than what was important to residents. One Thames Place care worker described certain families as taking “away from residents’ rights” by trying to structure the resident’s day according to their preference rather than the resident’s preference. Yet, as families generally were not on site 24–7, their influence was not constant. As power is fluid and situational, the locus of control also ebbed and flowed by circumstance and over time as did what mattered most to whom. Quality, therefore, was a relational and negotiated process.

Quality Conundrums

The nature and extent of the overlap and hence relationship between the quality of life and care were neither uniform nor consistent and frequently shifted over time and across resident. Given their emphasis on overseeing resident care, care managers emphasized care when defining what is most important for quality of life. A manager from Garden House said:

Quality of life, of course, is mostly defined by their everyday care, and by their doctors and what’s going on with them. Most doctors are gonna look for quality of life by trying to give them the right medications to suit what’s going on. As long as that’s in place, then in a facility like this our staff can help preserve their dignity and give them as much quality of life as possible.

In some instances, however, quality of care and quality of life were somewhat distinct. In others, they overlapped where at times and for certain residents, quality of life and care were indistinguishable. This latter scenario created “the quality conundrum.” The “quality conundrum” arose when a resident’s care needs escalated, and care tasks and routines occupied a larger proportion of daily life. In these instances, negotiating priorities involved quality of life being defined exclusively by quality of care. Typically, residents’ declining health, decreased level of cognitive or physical function, limited participation in self-care, and increased dependence on others for activities of daily living, instrumental activities of daily living, and health care decision-making led to quality conundrums. The daughter-in-law of a Hillside resident with dementia described her experience: “I hate for her to just lay in the bed sleeping all the time because they have to keep her sedated when she’s having a bad day. That, to me, is no quality of life at all.” The following fieldnote derives from a conversation with a memory care unit staff member at Garden House and a scenario when meeting perceived care needs overshadowed quality of life dimensions:

In our Unit, everyone is on a different level. . . Like, if you have Mr. Neil who’s a wanderer, just being able to give him that one-on-one attention that he needs to calm him down when he’s sundowning. Make sure he gets to the bathroom, because he has a habit of going in someone else’s room on the floor, or on his clothes. . . That he’s not walking around wet or you know…His hearing aids, he has a battery in his hearing aids. He loses it sometimes. His glasses, he hides them. Just constantly watching him and making sure that he has his glasses so he can see or his hearing aids so he can hear.

The conundrum therefore refers to the ongoing challenge of finding ways to enhance resident quality of life that are not exclusively about meeting residents’ escalating care needs, and when residents have limited involvement in their care or are unable to articulate preferences.

Quality as Dynamic, Situational, and Relational Processes: Case Example

We illustrate the dynamic and complex nature of quality of life and care, including how they are intertwined, can range in scenarios and viewpoints, key factors, and outcomes, with a case example involving quality dilemmas and a conundrum.

When Mr. Barker, an 88-year old veteran, and his wife moved to Garden House, quality of life to him involved: meaningful activity, relationships, independence and autonomy and supporting his psychological and spiritual well-being, life-long learning, and sense of purpose. Good food, staff, communication, responsive care partners, and support for his quality of life preferences were key to his definition of good quality care. Initially, he complained about suboptimal engagement and food quality, but as his wife declined, he emphasized quality of life and care as connected to his role of husband and prioritized being with and caring for his wife. Staff and his family were supportive of his goals. The introduction of hospice for her, however, disrupted his routine. Workers arrived unannounced and took over care. Mr. Barker requested they schedule appointments and keep him engaged in her personal care. Convoy members created respite opportunities. Except for doctors’ appointments, he resisted.

After months of intense spousal caregiving, Mrs. Barker passed away and according to their son, “Mom’s passing was, obviously, devastating to him emotionally, but it really was like a load lifted off of him, too.” Mr. Barker felt that he had lost purpose and his most meaningful relationship. He was lonely, bored, and wanted to move home. His children disagreed, creating a quality dilemma. Mr. Barker said, “being here solves THEIR problem of what to do with Dad,” not “my problem of wanting to be more socially stimulated and independent.”

Mr. Barker sought out relationships with residents and staff and with the help of staff, family, and friends left Garden House regularly to attend a veterans’ group, church, and other community activities. He began spending weekends at his home, his children’s homes, and traveled. Staff gave him ownership of his care. He said, “They allow me to do more for myself than they did before…Anything I can do for myself, I want to do.” He developed a romantic relationship, which further buoyed his quality of life and care. He commented, “We’re both easy going and get along. You know she sometimes comes to my room and we’ll have a glass of wine together.” Although this relationship brought him great happiness, his daughter disapproved.

A year later, Mr. Barker got sick and refused to get out of bed. Honoring resident rights, one of his care workers said, “They’re old and tired and sometimes they don’t want to do things when we ask them. That’s okay.” Mr. Barker’s grandson complained, “He’s just lying there and that is not him. He doesn’t just lie there doing nothing. He expects me to motivate him.” After the grandson left, the care worker said, “The family can do that [make a resident do something]. We can’t” and reiterated the need for Mr. Barker to rest. For his family, he got up, which tired him out. The following day, he fell and broke his hip.

In the hospital his physical incapacitation led to an emphasis on his physical care needs, a quality conundrum. His prioritization of independence, autonomy, and optimal engagement were overshadowed. However, his girlfriend began calling and playing music. He explained, “I’ve never felt like giving up except that one time in my life, but she got me through it.”

Mr. Barker moved to a rehab facility chosen by his children without seeking his input. Yet, he was determined to walk, regain independence, and resume his relationship and meaningful activities. Fearing another fall, his daughter prioritized safety, prioritizing wheelchair use outside therapy sessions. He complied reluctantly. Garden House’s care coordinator felt this quality dilemma hindered his recovery. After a month of rehab, he returned to Garden House though not at his previous level of physical function, which depressed him.

At the end of the two years, he had returned to being mostly active and rejected his daughter’s oversight, which placed strain on their relationship. In addition to disapproving of his romance, Mr. Barker said “My daughter gets upset if I even leave my room.” He said, “What am I supposed to do? Curl up and get ready to die like some of these other people? No. I want to live.” This time, he had support from his two sons and Garden House management and staff in prioritizing engagement over playing it safe. His daughter and grandson became less involved in his life, which by most accounts, improved his quality of life and care.

Influential Factors

As Mr. Barker’s case demonstrates, a myriad of intersecting factors operated at multiple levels to shape perceptions and experiences of residents’ quality of life and care. The societal, regulatory, and industry-level factors, including resident rights, the view of residents and family members as consumers, and the type of care and expectations for care environments, including training and staffing ratios, all of which set the parameters for daily life and care delivery in AL.

Care community factors influenced quality expectations and experiences, including the size, location, staff composition, training, and knowledge, job configuration, workload and care demands, resident acuity levels, resources, and involvement of family, friends, volunteers, and external care workers, including hospice, doctors, nurses, social workers, and a variety of therapists. A care community’s overall care philosophy and culture also influenced how people perceived quality of care. As one daughter of a Riverview Estates resident noted, “The staff seem to imbue that entire philosophy of the home. The people who work there feel valued. . . it spills over into their care for the people.” Quality of care was compromised when care staff were untrained or unsuitable for care work. As one Oakridge Manor male resident noted, “There are people here who have no training, whatsoever.”

Next, influential convoy factors included the size, composition, and type. Cohesive convoys, those with greater communication, consensus and collaboration, had the best quality processes and outcomes. As the Oakridge Manor director explained, “[Quality] takes a village.” She elaborated:

it works at its best when we’re all on the same page for a common cause, and the common cause daily is quality of life. Every day we’re partnering with families to maintain the quality of life for the residents. Some days are better than others.

Administrators often expressed the importance of “teamwork” to provide quality and the role of external care partners. The executive director from Feld House stated, “We would not do as well, and the resident quality of life would not be anything what it is, without our volunteers.” Nevertheless, given the dynamism of resident and convoy member situations, quality was fluid and dilemmas and conundrums occurred across all convoy types.

Mr. Barker’s convoy members played a part in creating tension and frustration in his life and alternatively helping him and preventing him from achieving the quality of life he aspired to and quality care he preferred. As demonstrated, individual care convoy members’ characteristics, involvement in care, and their knowledge, attitudes and beliefs, and care strategies were highly consequential. As the Garden House care director noted, “I think the family’s role in quality of care is being there for us when we need them, being there for our residents when we need them.” This was universally the case. However, not all residents were equally supported by informal care partners, which placed additional demands on care staff and providers.

Domains of quality of life also were prioritized differently depending on a combination of resident factors, including background, attitudes, strategies, beliefs, and their needs, abilities, preferences, and resources. Mr. Barker’s story could have played out any number of ways, particularly if he was less assertive, determined, physically mobile, or cognitively able.

Discussion

This article examined residents’ quality of life and quality of care in AL over time and from multiple viewpoints within care convoys. Findings show that quality is more than a checklist; rather it is a process as highlighted by our core category of “negotiating priorities.” In line with previous research (Ball et al., 2000; Morgan et al., 2011), we found the notion of quality included overlapping and interrelated domains. Resident well-being, autonomy and independence, optimal engagement, and meal experiences emerged as salient dimensions of resident’s quality of life. Quality of care included meeting residents’ care needs, the delivery of care, care relationships, and addressing the needs for safety and security. Resident and care partner priorities were not always consistent or shared, in part because, as our analysis confirms, quality is personal, subjective, dynamic, and situational. Our concepts of quality dilemmas and quality conundrums represent the dynamic points at which negotiating priorities are most evident and further illustrate the value of a longitudinal approach.

Findings reinforce the increased prevalence and complexity of health care delivery and perceptions of quality within this population and the “evolving mosaic of care” in response to their escalating care needs (Kemp et al., 2019). Building on our past work (Kemp et al., 2018; Kempt et al., 2020), we analyzed the beliefs of multiple stakeholders in the care convoy, including the resident, informal and formal care partners. Quality dilemmas occurred when competing stakeholders in a care convoy differ in the assessment of quality priorities. Residents’ care convoys typically included a variety of care partners who exert variable influence on resident daily lives and care routines.

Understandings of quality dilemmas are tied to these interlocking stakeholders. As shown in Mr. Barker’s case, the composition and relative power of convoy members influences what domains of quality are prioritized. Moreover, as with Morgan and colleagues’ (2011) finding of “resident quality balance,” we show that quality also is about the match between the resident’s needs and the AL’s profile. Moreover, industry-level and AL-level barriers such as regulations, finances, and staffing facilitate or impede decisions about and interpretations of quality. By using a convoys perspective, we extend Morgan et al. (2011) discussion of quality balance by incorporating an intermediary- or relational-level to the understanding of quality in AL. The quality dilemma recognizes power that informal care partners can play in “negotiating priorities” between quality domains. Additionally, the composition and structure of the convoy matters. For example, residents with discordant or absent convoys lack informal stakeholders to advocate on their behalf. Moreover, as Hawes and Phillips (2007) suggest, a wide variety of communities fall under the regulatory category of AL, leading to differences between resident and family expectations for quality and the resources of their community leading to a different type of quality dilemma.

Quality conundrums occur when quality of life becomes subsumed by care needs. Our research confirms the longstanding finding that AL residents have significantly more care needs than in the past (Arneson et al., 2020; Kemp et al., 2019). Our previous research shows that most residents actively participated in their own convoys through self-care, including self-advocacy, and for a select few, convoy leadership, including organizing care (Morgan et al., 2021). Our current findings support these previous findings and further demonstrate that resident convoy participation decreases alongside declines in cognitive and physical function. As resident involvement declines or when residents cannot articulate their preferences over time, informal and formal care partners’ involvement increases thus care needs overshadow quality of life.

In AL, there is a hierarchy of quality. At the most basic level, quality of care must be met. When essential care needs are met, residents and their care convoys broadened discussions to include quality of life. Care needs were prioritized when residents’ daily needs for care expanded due to frailty, declining health, and/or cognitive impairment. Prior research grappled with this decline noting a “scaling down” of expectations whereby persons with limited function prioritize satisfaction derived from smaller actions (Ball et al., 2004; Ball et al., 2000; Rubenstein et al., 1992). Additionally, it mirrors the shrinking or decreased use of physical space which can occur with increases in frailty and impairment (Rowles, 1978; Vandenberg et al., 2018). Despite heightened care needs, quality of life retains value. As nursing home research shows, identifying ways for residents to make choices about their care and lives, a key PCC tenant, enhances quality of life even for those with high-level care needs (Abbott et al., 2018; Poey et al., 2017).

Our research is not without limitations. First, our research was conducted exclusively in one state. Although we purposively sampled eight AL communities representing variability in several factors, the AL context varies from state to state due to variability in state regulations and regional differences. Second, while we sought to include as many convoy members as possible for each focal resident, inevitably some chose not to participate. As such, we may be missing the opinions about quality from the full spectrum of convoys members. Finally, this research focuses exclusively on the qualitative evaluation of quality. A mixed-methods approach might incorporate standardized metrics to explore the broader continuum of quality.

Our research has considerable strengths which have implications for research, policy, and practice. The use of in-depth, qualitative, longitudinal data collection to examine quality across multiple stakeholders allows for a dynamic and contextual exploration of these issues in AL. This in-depth examination of quality of life and care over time allowed us to observe and document changes in perceptions of quality among convoy members that could not have been captured using cross-sectional or survey data.

A substantial component of quality of life among stakeholders is optimal engagement not just activities. With health decline over time, many residents lose interest in and are less able to participate in planned activities, yet engagements remain important to quality. Future research should examine how AL and Convoys of Care can facilitate optimal engagement for frail and cognitively impaired residents to enhance quality of life. For example, we have begun to examine value of meaningful engagement for residents with dementia (Ciofi et al., 2021; Kemp et al., 2021).

Quality of life and care are contextualized to the individual and their convoy. Residents and stakeholders should attend to relationships and understand the perspectives of those involved in care. Changes in resident care needs over time shift the definitions of quality and the salience of quality of care for the resident and convoy members. These shifts are regularly negotiated within care convoys and often result in quality conundrums and quality dilemmas and illustrated in Figure 1. Balancing risk and promoting autonomy can be at odds (Barmon et al., 2017; Perkins et al., 2012); both should be addressed with efforts to build consensus within convoys around care and life goals and strategies to achieve them, which can help maintain balance between quality of life and quality of care. Shared definitions of quality and agreed upon strategies within care convoys for achieving quality led to residents and caregivers feeling supported whereas competing definitions did not. For practitioners, one approach could be to enhance quality by incorporating PCC principles assessing individual preferences and distinct care plans to meet the meets resident’s ever-changing needs (Abbott et al., 2018; Fazio et al., 2018; Morgan et al., 2021; Sion et al., 2020). In conclusion, the overall availability and involvement of formal and informal support and communication, consensus, and collaboration are central and influence care and residents’ ability to age in place with a high quality of life and quality care. Daily life and care in these settings are complex, dynamic, and involve an array of stakeholders – factors that are essential to acknowledge in research and should be considered in the development and implementation of meaningful quality improvement strategies.