Nursing staff perceptions of outcomes related to honoring residents’ “risky” preferences

Abstract

Nursing homes (NHs) are challenged to consistently deliver person-centered care (PCC), or care based on residents’ values and preferences. NH staff associate certain resident preferences with risk. However, there are limited evidence-based person-centered risk management strategies to assist NH staff with risky resident preferences. The purpose of this study was to explore NH staff perceptions of health and safety outcomes associated with honoring NH residents’ risky preferences to inform intervention development. This descriptive, qualitative study used sequential focus groups and content analysis, revealing that nursing staff perceive negative and positive outcomes for both staff and residents when seeking to honor residents’ risky preferences. This is supported by three themes: 1) Potential Harms to Staff, 2) Potential Harms to Residents; and 3) Positive Shared Outcomes. These results contribute a set of nurse-driven quality of life and quality of care outcomes for NH staff and residents associated with PCC delivery in NHs.

Introduction

There are 1.3 million residents living in 15,600 nursing homes (NHs) throughout the US, 47.8% of whom live with Alzheimer’s Disease or other dementias (Harris-Kojetin et al., 2019). All NHs that receive federal funding are required to deliver person-centered care (PCC), that is, care based on residents’ values and preferences; however, resident preferences are not consistently honored in NHs (Andrew & Meeks, 2018; Van Haitsma et al., 2014), attributed, in part, to the potential for adverse events, divergent staff values, and staff perceptions of risk associated with honoring residents’ preferences. Adverse events, defined by the Centers for Medicare & Medicaid Services (CMS) as “any undesirable, and usually unanticipated event that causes death or serious injury, or the risk thereof” (Centers for Medicare & Medicaid Services, 2016, p. 68848), includes physical harms or injury (e.g., death or loss of physical independence), psychological harms or injury (e.g., depression or loss of identity, autonomy, or confidence), social harms (e.g., isolation, loss of friendships), and financial harms (for example, loss of income) (CNA Financial Corporation, 2018). In the NH, preferences that could lead to an adverse event are commonly referred to as “risky preferences”.

NH staff perceptions of potential health and safety risks is a barrier to honoring residents’ preferences for care and activities of daily living (Behrens et al., 2020; Parker et al., 2019) and are largely unexamined in the research literature. There are a number of resident preferences that staff consider ‘risky” including going outdoors/walking outdoors alone, frequent snacking, refusing a room change, refusing to use fall prevention devices, refusing to adhere to prescribed diets, and declining personal care and prescribed therapies (Behrens et al., 2018; 2020). Recent work suggests that nursing staff predominantly avoid taking risks around honoring residents’ preferences due to a lack of evidence based, person-centered risk management strategies (Co-Author et al., 2018; Calkins & Brush, 2016), and fear of causing resident harms leading to litigation and/or job loss (Behrens et al., 2020). Consequently, some nursing staff default to what they believe to be the ethical imperative, to “do no harm”, and avoid any (perceived) “risky” preferences of NH residents, rather than engage in mutual planning with the resident to mitigate potential risks related to the preference (Behrens et al., 2020). Complicating efforts to honor resident preferences is the presence of divergent safety perceptions and values, including differences between the staff and administration’s perceptions of safety culture (Banaszak-Holl et al., 2017). Moreover, preferences perceived by staff as ethically difficult to manage are associated with decreased job satisfaction (Vassbø et al., 2019), indicating challenges in balancing high-quality PCC with ethical values.

The development of culturally relevant and acceptable intervention strategies requires an understanding of the expected outcomes NH staff associate with honoring residents’ “risky” preferences. Thus, the purpose of this study was to identify the health and safety outcomes staff associate with honoring NH residents’ risky preferences for everyday living and care activities. Findings can inform development of person-centered interventions that will help staff find ways to manage risky preferences of residents in compliance with expected standards for PCC delivery in NHs.

Methods

Design

A qualitative descriptive methodology with sequential focus groups was used to obtain in-depth description of the complex and sensitive phenomena of risk as used in the everyday language of nursing staff. The methodological approach has been discussed in a previously published study (Behrens et al., 2020). Briefly, we introduced direct-care nursing staff to the definition of risk as a decision-making process that involves self-recognition, recognition of others, and a weighting of possibilities for harm or loss associated with a specific risk event (Shattell, 2004). We then asked focus group participants to reflect on their perceptions of risk associated with honoring (or not honoring) residents’ preferences for care and activities of daily living over two consecutive focus group meetings.

Theoretical Framework

This study was guided by the conceptual model for preference-based risk engagement (Behrens et al., 2020) (Figure 1). This model guided the development of the semi-structured interview guide and framed data analyses. This model was chosen because it offers a comprehensive view of the social and cultural aspects that may influence NH staff perceptions of preference situations that carry risks of harm to residents’ health and/or safety. What the model lacks is a clear link between honoring residents’ preferences and consequential outcomes that can be expected in the NH setting.

Figure 1.

The Preference-Based Person-Centered Risk Engagement Model

Note. Conceptual model for preference-based risk engagement with older adults living in nursing homes. This model was adapted from Behrens et al. (2020), adding quality of care concepts.

Setting and Sample

Purposive sampling (Creswell & Creswell, 2018) was used to recruit direct-care nursing staff employed in three NHs located in northeast (n= 2) and southeast (n=1) Pennsylvania. The participating NHs were actively responding to 6–12 regulatory citations for care activities that could potentially harm or actually did harm residents, suggesting nursing staff should have been engaging in risk management. Nursing staff were eligible to participate if they were: (a) employed as a direct-care registered nurse (RN), licensed practical nurse (LPN), or certified nursing assistant (CNA); (b) were 18 years or older; and (c) were willing and able to attend two, off-shift focus groups (FG). To avoid coercion staff were recruited using a study flyer posted in the NH community which asked staff to contact the researcher directly if they were interested in participating. Participants were provided refreshments and upon completion of both focus groups were given a $50.00 gift card.

Ethical Approval

Ethical approval was obtained from the university of record and as required by one NH prior to initiating study procedures (Behrens et al., 2020). All participants were fully informed about the study with a written study summary document and were asked to provide verbal consent prior to starting FG activities.

Data Collection and Analysis

Data were collected for this study between March and April 2019 in sequential focus groups (SFGs) conducted immediately after day shift about one week apart. SFGs involve conducting multiple consecutive focus groups with the same participants, over time, and around the same central topic (Jacklin et al., 2016). The first author (LLB) conducted all 12 SFGs with a co-moderator using a semi-structured interview guide (Figure 2). FG sessions lasted approximately one hour each, were audio recorded, and transcribed verbatim. Data were analyzed by two coders (LLB, MB) using conventional content analysis with a constant comparative method (Saldaña, 2016). Trustworthiness of study results was established through purposive recruitment, review of major themes with FG participants at the conclusion of each FG, consensus agreement of multiple coders that data saturation has been achieved (Krueger & Casey, 2015), data triangulation between audio recordings, field notes, peer debriefing(Creswell & Creswell, 2018), and use of peer reviewed criteria for transparent study reporting (Tong et al., 2007).

Figure 2.

Sample Focus Group Questioning Route

Results

Demographics

The characteristics of the NHs are described in Table 1. A total of 27 licensed (RN; n=6, LPN; n=8) and unlicensed nursing staff (CNA; n=13) participated in 12 SFGs, with a range of four to five participants per group except for one FG, which had three participants. Most participants were female (85.2%) and white (59.3%). Participant ages ranged from 18 to over 60 years. Just over half (51.8%) of the participants reported over 11 years of experience in their current roles (i.e., RN, LPN, CNA) and over 11 years of collective experience working in NHs (51.8%). Most (66.6%) of the nursing staff reported their highest level of education as high school (n=6) or technical school/specialty diploma (n=12).

Table 1.

Characteristics of Participant Nursing Homes

Variable	Site #1	Site #2	Site #3
Organization type	Non-profit	Non-profit	For-profit
Payer type	Medicare, Medicaid	Medicare, Medicaid	Medicare, Medicaid
# Certified beds	130	324	180
Overall star rating	4	5	1
# Health inspection deficiencies	6	6	12

Note. Characteristics of nursing homes that interview participants were recruited from are shown. Data for this chart was initially retrieved from https://www.medicare.gov/nursinghomecompare on 10/18/2018 and subsequently updated on 5/9/2019. The reporting period for health inspection ratings was 4/1/2018–3/31/2019.

Themes

Staff perception of outcomes that result from honoring resident risky preferences are grouped into three themes: 1) Potential Harms to Staff; 2) Potential Harms to Residents; and 3) Positive Shared Outcomes. See Table 2 for a summary of themes and illustrative quotes and Table 3 for a summary of health and safety outcomes nursing staff associated with each resident risky preference category.

Table 2.

Summary of Themes and Illustrative Quotes

Theme	Sub-theme(s)	Code(s)	Exemplar Quote
Potential Harms to Staff	Injury	Staff Injury	“And somebody tha′s not experienced, that would go and do that for that resident, it could possibly lead to injury for the resident. Or the staff” – FG#1, Site_3_Unl_1
	Emotional Reactions	Fear	“… nurses are losing their job. When they′re providing the preference and having significant problem, they end up losing job.” FG#2, Site_2_Lic_5
		Frustration	“I feel like that with a lot of residents. You go out of your way to try to help them, and then they don′t want to help themselves, so it′s frustrating” – FG#2, Site_3_Lic_1
		Guilt	“Personally, I feel damn guilty, … but you just feel guilty if something happens or you didn′t get so-and-so a drink or somebody wanted this.” FG#1, Site_3_Unl_3
Potential Harms to Residents	Physical Harms	Cardiovascular Risks	“[Not] adhering to their diet…tha′s their preference and that can cause some cardiac issues, fluid retention”-FG#1, Site_3_Lic_2
		Choking/Aspiration	“If they were a choking risk, I wouldn′t do it [honor preference]…Because they might choke. They might die. They′d be going down the hall with the code cart…I wouldn′t be happy about that.”- FG #1, Site_1_Lic_4
		Changes in Weight	“If they continuously miss breakfast, because they′re sleeping in, that can be a weight loss issue.”- FG#1, Site_3_Lic_1
		Skin Breakdown	“I explained to him the risk for wound infection, risk for wound not healing, not getting out all that debris, which he never understood. -FG#2, Site_2_Lic_2
		Falls	“…That was a big risk for me because I didn′t think he would come back in [from outside], …I was nervous about that. That could have been an elopement that could have resulted in a fall…”-FG#2, Site_3_Lic_1
		Incontinence	“…he didn′tt believe we′d be fast enough to get him to the bathroom. He said when it comes on he has to go. I tried to give him the … urinal and he wasn′t fond of the idea…”-FG#2, Site_3_Lic_4
		Physical Discomfort	“ … the one by the window might want the window open, or they might want the heat on. It could be either way, … might not want it cold or they might not want it hot. They′re not comfortable. They′re complaining they′re hot, or they keep complaining.” -FG #1, Site_3_Unl_2
	Psychosocial harms	Resident Mood/Behaviors	“when I think of the risk, I think of the… anger, the isolation, the sadness, when you don′t give the request, the desire that they want…”-FG#2, Site_2_Lic_3
		Loss of Dignity	[Resident] said, “I don′t feel good because I don′t have no more dignity, because I have to stay naked to take a shower in front of you guys.” Then she cried.” -FG#1, Site_2_Unl_3
		Negative social interactions between residents	“You know, you have to take them to a different table where they get assisted, because those resident don′t want that particular resident there....Think about high school and the lunch room.”-FG #1, Site_2_Unl_1
Positive Shared Outcomes	Combined Staff/Resident Outcomes	Nurse-Resident Relationship	“Just look to us like we are your family. We are your daughter. So we are taking care of you…. She [Resident] said to me, “You make me happy, and then you make me comfortable with all of you guys.” -FG#1, Site_2_Unl_3
		Positive Care Interactions	“It makes them happy, and it makes your job easier, because you find happiness for them. So it′s like, pleasant atmosphere for everyone.”- FG#1, Site_2_Unl_1

Table 3.

Health and Safety Outcomes Associated with Honoring Residents’ “Risky” Preferences

Preference	Health and Safety Outcomes
	Downside of Risk-Taking: Potential Harms	Upside of Risk-Taking: Potential Benefits
Food/Fluid intake	• Choking (P)2 • Aspiration (P)3 • Weight loss (P)3 • Dehydration (P)3Skin breakdown (P)3 • Skin burns (P)3 • Loss of dignity (E, S) 2, 3 • Death (P)3 • Family disagreements (S)1	• Choice (E)2 • Improved resident mood (E)2 • Increased food intake (P)2 • Weight gain (P)3 • Reduces negative resident behaviors (P)3 • Makes staffs’ job easier (S) 1
Shower/bathing	• Skin breakdown (P)3 • Skin irritation (P)3 • Skin burns (P)3 • Poor wound healing (P)3 • Loss of dignity (E, S)2, 3 • Increased anxiety and anger (E)3 • Family complaints (S) 2 • Overall negative atmosphere (S) 1	• Reduction in resident anxiety (E)3 • Increase in positive affect and touch from the resident (E, P)2 • Resident’s feeling good about themselves (E)3
Adaptive equipment	• Falls (P)3 • Loss of dignity (E, S)2, 3	• Positive emotions (E)3 • Engagement with environment (S) 2
Bedtime/Wake-up time	• Falls (P)3 • Weight loss (P)3 • Missing scheduled medications (P)3 • Negative behaviors from residents (P)2, 3	• Promotion of independence & risk (E)2
Medication Administration	• Increased aggression (P, E) 3 • Regulatory deficiency (S) 3 • Intake of unknown medications (P)2 • Drug interactions (P)2	• Medication compliance (P)2 • Feelings of independence (E)3 • Improved participation in eating and therapy (P)2 • Increased trust between resident and nurse (E)2
Walking/Ambulation	• Falls (P)3 • Decreased range of motion (P)3 • Contractures (P)2, 3	• Improved mood (E)3 • Physical independence (P)2 • Compliance with care activities (P)2 • Improved well-being (E)3
Leisure activities	• Falls (P)3 • Elopement (P)3 • Sunburns (P)3	• Positive emotions (E)3 • Reduces negative behaviors (P)2, 3
Transfers	• Falls (P)3 • Broken bones (P)3 • Skin tears (P)3 • Staff injury (P)1	• None discussed
Spending time alone	• Fall with injury (P)3 • Unwitnessed choking (P)2 • Negative resident to resident interactions (S) 3	• None discussed
Toileting	• Falls (P)3 • Increased workload on CNA (P, S) 1 • Skin Breakdown (P)3 • Incontinence (P)2	• None discussed
Care provider	• Skin breakdown (P)3 • Increased confusion (E)3 • Agitation (E)3 • Combativeness (P)3 • Complaint-initiated state investigation (S) 3	• None discussed
Being helpful	• Unintentional harm to another resident (P, E) 3	• None discussed
Seating location	• Negative resident to resident interactions (S) 3	• None discussed

Note. This table summarizes health and safety outcomes identified by nursing staff and groups them by risky preference category. Types of potential harms or injuries and nurse sensitive quality indicators were attributed based on literature review and denoted as: (P) Physical; (E) Emotional; (S) Social;

¹measures structural factor that affects nursing care delivery;

²measures type of direct care delivered;

³measures impact on patient outcome.

Theme 1: Potential Harms to Staff

When discussing the management of residents’ risky preferences, nursing staff described their own, negative psychosocial responses including fear, frustration, and guilt. They described themselves as fearful by nature and apt to avoid taking risks in pursuit of honoring resident preferences. They described deep fear associated with reporting adverse events that could result in losing their jobs. For example, one CNA discussed a situation where the NH was working short staffed and a resident, who was identified as a “fall risk”, preferred to toilet independently - often turning off her fall alarm and attempting to independently walk to the bathroom. On one occasion the CNA assisted this resident to the bathroom and, at the resident’s request, left the bathroom door closed just enough to peek in and see her. At the same time a resident across the hall who was described as a “persistent, angry lady who will swat you if you don’t do what she wants” rang her bell for assistance. The CNA made a judgment to run over to tell the resident that she would be right there to help. When she returned to the resident in the bathroom, she was reprimanded by her supervisor for leaving a person with a fall alarm unsupervised potentially increasing the risk for a fall. While the CNA agreed with the supervisor’s rationale, the CNA and her colleagues expressed frustration with how difficult it is to multi-task to fulfill residents’ preferences especially when they do not feel supported by their supervisors. They described being rushed to provide basic care, resulting in skipped care or things done wrong - potentiating resident injury. Staff did not feel they could speak freely about their risk perceptions around honoring preferences with their supervisors, and were mostly concerned with the possibility of retribution from NH leadership:

“… nurses are losing their job. When they’re providing the preference and having significant problem, they end up losing job.” FG#2, Site_2_Lic_5

Nursing staff also suggested that their views are less valued than those of the residents and their families. One staff member explained:

“…they try to honor the family request instead of thinking about [the staff] ... cause you can replace [me], you can get rid of me and get somebody else...” (FG#2, Site_2, Unl_1)

Other negative feelings expressed by nursing staff included anxiety, anger, aggravation, and guilt. For example, nursing staff expressed feelings of guilt when facilitating residents’ preferences that resulted in harm, or if a resident requested something and the staff member failed to fulfill the request. One staff member reported that when she goes home at night she reflects on the day and often feels guilty:

“Personally, I feel damn guilty, … guilty if something happens or you didn’t get so-and-so a drink or somebody wanted this.” (FG#1, Site_3_Unl_3)

Her guilt led her to consume alcoholic beverages on a routine basis after work. These internalized coping responses were pervasive among nursing staff.

Likewise, another licensed nurse reflected on how her lack of work experience and high workload demands in the NH make it difficult for her to honor resident preferences. When coupled with poor communication between NH leadership, families, and direct-care staff, it can contribute to a culture of blame. Nursing staff explained that they generally perceived that they get “screamed at” by residents, family members, physicians, and stakeholders when a residents’ preferences are not honored, or when preferences are honored and the resident is injured. An example was given describing the charge nurse’s role as a “buffer”, hearing complaints from residents, family members, physicians etc. and then is responsible to communicate the issue at hand with direct-care staff. Nursing staff expressed a range of distressing emotions related to feeling unappreciated by their colleagues or administration. In addition to psychosocial injuries, without detail, nursing staff suggested a risk for physical injury to themselves. One staff member stated:

“And somebody that’s not experienced, that would go and do that for that resident, it could possibly lead to injury for the resident. Or the staff.” (FG#1, Site_3_Unl_1)

Nursing staff explained that personal injury can result from efforts to protect residents from harm, particularly those with less experience in caregiving.

Theme 2: Potential Harms to Residents

Nursing staff described the potential for both physical and psychosocial harms resulting from honoring, or not honoring, residents’ preferences.

Physical harms.

Nursing staff commonly perceived the potential for physical harms when honoring residents’ risky preferences around choices for food, bathing, toileting, use of adaptive equipment, medications, walking/ambulation, transfers (e.g., from bed to chair), leisure activities, spending time alone without supervision, and gender of care providers. These physical harms included cardiac problems, choking/aspiration, weight changes, skin breakdown, and falls with injury.

Nursing staff predominantly discussed choking and aspiration as being related to unsafe food and drink preferences. Residents’ non-adherence to prescribed food consistency was thought by staff to put the resident at risk for choking and possibly death. Nursing staff were on high alert to this potential and reported a sense of responsibility to prevent this from occurring by denying residents’ preferences. One nurse stated:

“If they were a choking risk, I wouldn’t do it [honor preference] ...Because they might choke. They might die. They’d be going down the hall with the code cart…I wouldn’t be happy about that.”- FG #1, Site_1_Lic_4

Weight gain or loss of the resident was associated with food and fluid intake preferences, as well as preferences around bedtime and wake-up time. Nursing staff expressed concern that residents’ preferred times for medication administration may not align with prescription guidelines, resulting in missed or late administration and resultant negative sequalae. Nursing staff associated skin breakdown with a wide array of risky preferences related to food and fluid intake, showering and bathing, toileting, leisure activities, transfers between surfaces, and care provider preferences. Types of skin breakdown were discussed as burns, tears, irritation, and poor wound healing.

Nearly all risky preference scenarios were associated with the potential for residents to experience a fall with injury. Preferences around use of adaptive equipment, bedtime/wake-up time, toileting, independent ambulation, certain leisure activities, and spending time alone were all associated with fall injuries. In one scenario a wheelchair bound resident was described as typically anxious and easily upset when his wish to leave the building on his own was denied. The staff member was concerned about elopement risk, as the resident had left the building unattended previously:

“…That was a big risk for me because I didn’t think he would come back in [from outside], …I was nervous about that. That could have been an elopement that could have resulted in a fall…”-FG#2, Site_3_Lic_1

Nursing staff also described the potential for falls in situations where they were willing to honor preferences and in ones where they were not willing. In the latter scenarios, the risk for falls was the reason for not honoring the preference such as independent toileting or use of certain footwear.

Psychosocial harms.

Nursing staff described the potential for psychosocial harms across risky preference scenarios including negative moods and behaviors, loss of dignity, and negative interactions between residents. Negative mood and behaviors were perceived as negative outcomes of not honoring residents’ preferences. Staff described episodes of agitation, refusal of care, and physical and verbal aggression when preferences were not honored. Nursing staff identified the need to honor activity preferences to prevent psychological injuries such as depression and anxiety. One nurse discussed potential psychological injuries that could occur when a resident’s preference is not honored:

“When I think of the risk, I think of the... anger, the isolation, the sadness, when you don’t give the request, the desire that they want…” (FG#2, Site_2_Lic_3)

Loss of dignity was another potential harm associated with not honoring residents’ preferences. This was relevant in situations where the resident was perceived by staff to be infantilized by being required to use eating utensils that resembled childhood sippy cups or silverware. In one example a resident preferred to use her fingers rather than an adaptive utensil to eat, staff viewed this situation as creating a risk for burns, food spillage, and a loss of dignity for the resident. In another example, honoring residents’ preferences related to hygiene could lead to a loss of dignity:

“Some residents would prefer to never take a shower, and that could lead to poor hygiene and further breakdown, and just dignity decline; and everything else.” (FG#1, Site_1_Unl_5)

Nursing staff indicated the need to consider issues of dignity in preference situations to protect and promote the emotional well-being of residents. One staff member reported what a resident said to them while being left naked in front of staff:

“[Resident] said, “I don’t feel good because I don’t have no more dignity, because I have to stay naked to take a shower in front of you guys.” Then she cried.” (FG#1, Site_2_Unl_3)

In social situations, such as mealtimes, where more mentally and physically able residents were not respecting their fellow residents with declining physical and mental abilities, nursing staff described protecting the resident’s dignity by moving the resident to another table. Nursing staff often used emotional reactions of residents to gauge how to respond to preference situations or assess if they have met the needs of residents. While potential harms to residents were most often identified, nursing staff also identified potential physical and psychological benefits of facilitating preferences when risk is involved.

Theme 3: Positive Shared Outcomes

Nursing staff perceived the potential for positive shared outcomes related to honoring residents’ preferences. These shared outcomes included improvements in nurse and resident moods, the nurse-resident relationship, and positive care interactions. Nursing staff identified potential physical and psychological benefits of facilitating preferences when risk is involved. For example, nursing staff described the potential for improving residents’ moods, reducing negative behaviors, and increasing food intake by honoring food preferences. Similarly, nursing staff also described the potential for reducing resident anxiety and increasing positive affect and behaviors by honoring residents’ bathing preferences. These positive outcomes in residents in turn prompt positive feelings/attitude among staff. In one instance, staff described how allowing a residents’ risky preference to leave the building and go outside by himself with appropriate safeguards (e.g., use of wheelchair, set time limit, staff supervision) in place improved the mood of the resident which, in turn, made the staff happy - contributing to a collaborative nurse-resident relationship.

“The outcome was that he actually got to get outside so he was happy, and I was happy that he was happy.” (FG#2, Site_3_Lic_1)

The nurse-resident relationship was described as a bi-directional emotional attachment between the nurse and the resident that is facilitated by getting to know one another by spending one-on-one time together. Having this type of connection with the care provider is described by one nurse, as being like a familial connection:

“Just look to us like we are your family. We are your daughter. So we are taking care of you…. She [Resident] said to me, “You make me happy, and then you make me comfortable with all of you guys.” (FG#1, Site_2_Unl_3)

Honoring resident preferences, including both seemingly small and large requests, supports mutual understanding and appreciation between the nurse and resident, creating positive care interactions.

“I feel the little things just add up. Just little things that you can do for them, then they’re more appreciative…they’re more understanding then...They understand we get behind sometimes.” (FG #2, Site_1_Lic_2)

Positive care interactions change the care environment, wherein the happiness of the resident and reduced staff stress makes the atmosphere more pleasant for everyone:

“It makes them happy, and it makes your job easier, because you find happiness for them. So it’s like, pleasant atmosphere for everyone.” (FG#1, Site_2_Unl_1).

Discussion

The purpose of this study was to explore nursing staff perceptions of health and safety outcomes associated with honoring NH residents’ risky preferences for everyday living and care activities. We identified three themes: 1) Potential Harms to Staff; 2) Potential Harms to Residents; and 3) Positive Shared Outcomes. The themes associate multi-level (staff, resident) outcomes with nursing staff judgement to honor, or not honor, residents’ risky preferences. Themes included the potential for both physical and psychosocial harms to the resident and staff individually, and a set of combined staff-resident outcomes.

This work corroborates and expands previous qualitative data indicating nursing staff prioritize safety first when delivering PCC (Behrens et al., 2020). In this study, nursing staff more often identified the potential for physical harms as being related to the downside of honoring residents’ risky preferences, while identifying more positive social and emotional outcomes with the upside of honoring residents’ risky preferences (Table 3). Additionally, nursing staff described a theme related to an emotional reaction of fear that could discourage reporting of errors or near misses that could result in resident harms while delivering care. This is in distinct conflict with core principles of safety culture, which includes a blame-free environment where staff can report errors or near misses in care without fear of reprimand or punishment (Gaur et al., 2022). Collectively, this suggests that provider concerns for risk and safety in NHs is a significant challenge to PCC delivery. In this study nursing staff reported making significant trade-off decisions between physical and emotional health of residents in their efforts to provide quality PCC in an unjust culture (Guar et al., 2022). The recent release of the National Imperative to Improve Nursing Home Quality: Honoring our Commitment to Residents, Families, and Staff report highlights evidence supporting the legal rights of residents to take risks and have their preferences honored (National Academies of Sciences, Engineering, and Medicine, 2022). This report could assist NH administrators, staff, and family in accepting appropriate risk-taking of residents to improve quality of life and care.

The findings of this study suggest a potential alignment with existing nurse sensitive quality indicators (NSQI) that support person-centered nursing care delivery in NHs (Nakrem et al., 2009; Sillner et al., 2021), such as the potential harms and benefits identified in Table 3. Consistent with previous quality assurance and performance improvement (QAPI) literature, nursing staff in this study identified multi-level structural, process, and health outcome indicators used in NH performance improvement studies, validating significance of the indicators to nursing care. For example, in this study, nursing staff identified: issues in the care environment of concern (e.g., lack of psychologically safe environment producing fear); issues in leadership processes (e.g., lack of support from leadership); and health outcomes (e.g., weight loss or gain, skin breakdown, and death as potential downsides of honoring residents’ risky preferences), which has also been identified in previous work on general risks to nursing care (Dellefield et al., 2013; Nakrem et al., 2009; Rantz et al., 2012; Towsley et al., 2013).

Nursing staff identified potential harms to both the resident and the staff in this study. Findings from this study are congruent, in part, with studies on adverse events among residents found in the literature such as falls with injury, incontinence, skin breakdown, and death (Bliss et al., 2017; Caspi, 2018; Hanlon et al., 2017). The scant research on staff injuries focuses on physical harms (Choi & Brings, 2016). Little research has examined psychosocial harms to the resident or the staff and their potential contribution to negative physical sequelae. Results of this study offer a set of key physical and psychosocial safety outcomes for nursing staff and residents who are important to evaluating resident well-being, satisfaction with care, and staff contributions to the care environment. These metrics can be useful in benchmarking and conducting root cause analyses to determine continuous and systemic quality issues in preference-based care delivery (Dyck et al., 2014).

Results of this study support and build upon the guiding framework in a few ways (Co-Author et al, 2020). First, it supports the existing model that associates risk engagement with QOL outcomes for older adults living in NHs. Second, the results of this study offer an expanded definition of QOL for residents to include elements of quality of care (e.g., physical and psychosocial adverse events for residents and staff) specific to the NH community. Nursing staff in this study also observed positive and negative affect and behaviors when working to honor residents’ preferences, facilitating the future testability of this framework by offering decision-taking outcomes that can be objectively measured in future research. Based on results of this study, the guiding Preference-Based, Person-Centered Risk Engagement Conceptual Model has been updated to indicated QOL and quality of care outcomes as shown in Figure 1. Further, the NH community is conceptualized as having dynamic interactions between residents and direct-care nursing staff that facilitate resident QOL. Future research should explore resident and family views on important health and safety outcomes associated with honoring risky preferences in NHs and test the relationship between honoring residents’ risky preferences and outcomes described by nursing staff.

Implications

This work offers several potential implications for the provision of quality care in the NH environment. For example, just cultures in NHs promote appropriate accountability with staff for practice errors and near misses in care. Leaders within just cultures accomplish this by identifying at-risk behaviors of staff that may cause a harm to the resident or staff, followed up with a remediation plan that includes staff education, coaching, and Quality Assurance and Performance Improvement (QAPI) activities to deliver high quality care (Gaur et al., 2022). Quality indicators are quantitative measures that serve as surrogates for quality care measures to assess the structural factors affecting performance of care (i.e., care environment), the process of care delivery that staff perform, and the impact on patient outcomes (Nakrem et al., 2009). Furthermore, QAPI should be systematically and continuously evaluating care against evidence-based standards and correcting care delivery (Dyck et al., 2014). Evidence-based guidelines for person-centered nursing care suggest monitoring indicators for resident well-being, satisfaction with care, and a therapeutic care setting (Sillner et al., 2021). Rates of adverse events (harms) are useful for benchmarking quality of care and creating organizational quality report cards (Dyck et al., 2014). Knowing the upsides and downsides associated with specific “risky” resident preferences provides an opportunity to work with residents, family, and the healthcare team to develop a plan to mitigate risks. It may also provide an opportunity for residents to modify their preferences. NH QAPI committees could use the identified indicators in Table 3 to determine what person-centered NSQI to include in written QAPI plans around resident choice, clinical care, and quality of life (QOL) (Dyck et al., 2014). Likewise, nursing departments could use this data to determine core NSQIs in the development of performance improvement projects in preference-based care.

Maintaining dignity of residents living with dementia has been a long-standing concern in the NH community. When judging how to honor residents’ risky preferences, nursing staff in this study were concerned with worsening moods or behaviors of residents, contributing to a loss of dignity, and prompting negative social interactions between residents with varied levels of cognition. The confluence of these potential psychosocial harms has been represented in conceptual work to maintain or restore dignity in older adulthood (Jacelon, 2014; Jacelon et al., 2004; Jacelon & Choi, 2014), particularly in individuals with Alzheimer’s disease and related dementias (Torossian, 2021). Jacelon and colleagues (2004) describe dignity as a basic human trait that is based internally on self-worth and externally on behaviors of what a person is willing to do or partake in or how they are treated by others. Attributed dignity is a form of social dignity that can be gained or lost in interactions with others (Jacelon, 2014). Jacelon’s research (2014) suggests that community dwelling older adults maintain or restore dignity by introspective means (e.g., considering the source of the insult and taking the insult to God); active means (e.g., removing themselves from the situation or complaining about the behavior); and interactive means (e.g., maintaining one’s position on a circumstance or getting angry). In this study, nursing staff reported residents responding to situations where their preferences were not honored with verbal and physical aggression, along with refusal of care. These responses may represent the active or interactive means by which NH residents are communicating their loss of dignity in preference situations. Maintaining dignity is central to maintaining QOL for older adults living in NHs (Kane, 2001), thus a loss in dignity represents a decline in residents’ QOL.

In a scoping review of dignity in older adults with dementia, Torossian (2021) suggested that persons with dementia are at a greater risk for loss of dignity due to their diminished autonomy, altered sense of self, lack of meaningful social roles, and limited interactions with others. Torossian reports aspects of long-term care facilities that alter residents’ dignity including staff-resident interactions. Staff-resident interactions that are non-personal, controlling, and patronizing to the resident negatively affect the autonomy and dignity of a person with dementia, while caring encounters that call residents by name, are in-person and respectful, and negotiate care with the resident support dignity of the resident with dementia (Torossian, 2021). PCC aims to support the dignity of older adults with dementia through meaningful engagement and nurturing care relationships (Fazio et al., 2018). Nursing staff in this study also identified the importance of the nurse-resident relationship and positive care interactions in facilitating preference-based care, corroborating findings of Torossian (2021) and pointing to important process measures for delivery of PCC to older adults with dementia in NHs. Previous work has indicated that a positive nurse-resident relationship is perceived by NH staff and residents as a facilitator to honoring resident preferences (Abbott et al., 2016; Bangerter et al., 2017) and significantly contributes to residents’ QOL (McCabe et al., 2021). Future preference-based care interventions should seek to restore and measure the dignity of residents, particularly those living with dementia.

There is dignity in risk-taking for older adults who live in NHs. When residents are afforded their individual right to express autonomy through risk-taking this enhances personal growth and QOL (Ibrahim & Davis, 2013). The known barriers to honoring residents’ risk-taking include fluctuating decision-making abilities of residents, multiple parties in the decision-making process, discordance between the values of society to enhance resident QOL through risk-taking and the risk intolerance of our culture; and confusion and fear around legal responsibilities among care providers (Ibrahim & Davis, 2013). Findings from this study could be used to address these barriers by informing staff training on the dignity of risk-taking, sensitizing administrators to the staff experiences when attempting to honor residents’ risky preferences, and facilitating local policy and procedures around risk-engagement.

Finally, the COVID-19 pandemic has laid bare the need to explore psychosocial outcomes given the global restrictions on social activities and the negative resulting impact on NH residents (Abbasi, 2020). In March of 2020, the Centers for Medicare and Medicaid Services (CMS) restricted visitation except for essential care workers, required social distancing, and eliminated group activities due to the COVID-19 pandemic (Centers for Medicare & Medicaid Services, 2020). Visitor restrictions weren’t lifted until November 2021 when government officials verified low infection rates and acceptable levels of staff and resident vaccinations (Centers for Medicare & Medicaid Services, 2021). Restricting visitation in NHs created an unintended ethical dilemma for NHs and residents, between a psychosocial outcome of social isolation and physical infection control practices (Abbasi, 2020). The outcomes discussed above associated with honoring older-adult preferences may be of service in considering such difficult compromises. This work provides a basis from which to consider legislative changes that will support NHs in improving working conditions for staff, and the establishment of guidelines and effective strategies that promote resident preferences, while balancing legal risks to NHs and providers (Ibrahim & Davis, 2013). Future work should probe further on best ways to accomplish these potential goals with larger groups of NH providers, inclusive of family and resident views.

Limitations

Limitations include limited generalizability due to small sample size, NHs without inspection citations not represented, and resident, family, organizational, and regulatory perspectives not represented. Another potential limitation is the impact of group think, as licensed registered and practical nurses were interviewed in the same group. CNAs were interviewed separately from licensed staff to limit power differences.

Conclusions

Results from this study identified a set of physical and psychosocial outcomes associated with delivering PCC in NHs. These outcomes inform our broader understanding about the potential benefits and harms related to honoring residents’ risky preferences. Collectively, this work provides an expanded theoretical framework to inform future development and testing of person-centered risk management strategies for use in complex NH care environments.