Every-day Living Inventory for Nursing Home (PELI-NH)
1* Showing Care and Respect。
4* Bathroom Needs
（5）Feeling Better When Upset
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“Make Me Feel at Ease and at Home”: Differential Care Preferences of Nursing Home Residents
Purpose of the Study: Assessing and honoring older adults’ preferences is a fundamental step in providing person-centered care in long-term care facilities. Researchers and practitioners have begun to develop measures to assess nursing home (NH) residents’ everyday preferences. However, little is known about how residents interpret and conceptualize their preferences and what specific clinical response may be needed to balance health and safety concerns with preferences.
Design and Methods: We used content analysis to examine interview responses on a subset of eight open-ended items from the Preferences of Every-day Living Inventory for Nursing Home (PELI-NH) residents with 337 NH residents (mean age 81). We considered how residents self-define various preferences of care and the associated importance of these preferences.
Results: Residents identified preferences for interpersonal interactions (greetings, staff showing care, and staff showing respect), coping strategies, personal care (bathroom needs, setting up bedding), and healthcare discussions. Respondents highlighted specific qualities and characteristics about care interactions that are necessary to fully meeting their everyday preferences.
Implications: Results contribute to an emergent body of research that utilizes patient preferences to achieve the goals of person-centered care. The complexity of these responses substantiates the use of qualitative inquiry to thoroughly assess and integrate NH resident preferences into the delivery of person-centered care.
Nursing homes Person-centered care Preferences Long-term care
Individualized, person-centered care has been placed as a top priority for the United States health care system through the passage of the Affordable Care Act (Love, 2011). A major component of person-centered care is accurately assessing and integrating patients’ individual needs and preferences in the healthcare delivery process (Housen et al., 2009; Talerico, O’Brien, & Swafford, 2003). Understanding and honoring patient preferences helps to build patient-provider relationships, improves quality of life for the individual receiving care, and is now a fundamental aspect of providing quality medical care. Within the specialized context of a nursing home (NH), the staff is responsible for delivering quality medical care while simultaneously building a comfortable environment where residents feel at ease and at home. One barrier to NH residents feeling at home is the ambiguity associated with simultaneously viewing the NH as a home verses a place to live, a social environment, and the institution where professional health service is provided (Nakrem, Vinsnes, Harkless, Paulsen, & Seim, 2013). Thorough assessment of resident preferences for everyday living and care is one mechanism by which NH staff can work effectively toward making residents feel at home. In recent years, the basis for evaluating the quality of long-term services and supports have been redefined by an appreciation of the role that NH residents play in directing and assessing the effectiveness of the care they receive (Cohen-Mansfield & Jensen, 2007; Edvardsson & Innes, 2010; Jones, 2011; Wunderlich & Kohler, 2001). For example, in 2010, resident preferences were added to the revised structure of the minimum data set (MDS), the standardized assessment completed by residents admitted to Medicaid-certified and Veteran Health Administration Community Living Centers (Saliba et al., 2012). Further, the NH culture change movement mirrors the values of the Affordable Care Act in its aim to prioritize quality-of-life and quality-of-care (Zimmerman, Shier, & Saliba, 2014). In response, a growing body of research is focused on assessing, understanding, and supporting NH residents’ preferences about their daily lives and the care that they receive while in long-term care facilities (Cohen-Mansfield, Marx, Thein, & Dakheel-Ali, 2010; Coppola et al., 1999; Simmons & Rahman, 2014).
Several assessment tools have been developed in recent years with the goals of evaluating preferences of NH residents and using such assessments to influence policy and practice (i.e., inclusion of preference items in the MDS and assessment of preferences as a goal for the Advancing Excellence NH Campaign, http://www.nhqualitycampaign.org; Van Haitsma et al., 2013; Van Haitsma, Crespy, et al., 2014). Resulting research work with these measures reveal important insights into how and why NH residents’ preference may change (Heid et al., 2014) and how staff can use preferences to elicit responsiveness in NH residents with dementia (Cohen-Mansfield et al., 2010). These measures offer insight into what general preferences are important to residents. As such, preferences can be used to guide care delivery efforts (i.e., knowing it is very important to a resident to choose what time to go to bed at night helps ensure that the care delivery conforms to the preferences of the resident and not the system).
However, clinical care often requires higher degrees of specificity about residents’ explicit preferences in order to more fully meet their individualized care needs (i.e., that the resident wants to go to bed precisely at 8 p.m. after watching television for an hour before turning the light off). Preliminary work in the intervention literature provides evidence for such individualized tailoring in care (Van Haitsma et al., 2015) while qualitative inquiry highlights a series of contextual factors that affect preference importance ratings and fulfillment (i.e., individual or environmental characteristics; Heid et al., 2014). However, researchers have yet to determine the range of preference interpretations and different ways in which preferences can be met within long-term care facilities. Understanding the specificity of preferences helps staff learn what is being interpreted by residents when asked questions about their care. More in-depth inquiry is needed to explore the specific characteristics of everyday preferences that residents identify as meaningful. This additional information will more fully guide the development of adaptive intervention efforts and the process of providing preference-based, person-centered care to NH residents.
The present study sought to describe how NH residents define their everyday preferences for care. We explore, from a qualitative perspective, the specific way that a person defines eight key care preferences. Further, we consider importance ratings associated with such responses. Although quantitative inventory contributes to our depth of knowledge pertaining to NH resident preferences, this approach illuminates the range of interpretations that residents may have about how best to meet their preferences in care and contributes to our depth of understanding resident perspectives on preferred ways to having preferences met.
Participants were NH residents recruited from 35 NHs in the greater Philadelphia area (Table 1). Cognitively capable residents were referred by facility staff (i.e., administrators, directors of nursing, and/or activity directors). Eligible residents were also English speaking, had been at their facility for at least 1 week, and were expected to remain at the facility for at least one more week. All residents who met the eligibility criteria were referred by staff to the study. Once residents were identified, the director of nursing verified that the elders had either the capacity to consent for themselves and/or had a family member that could consent for the resident and were cleared by their physician for cognitive capacity to consent and medical stability.
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Informed consent for participation in the study was established in-person by iterative questioning according to institutional review board approved procedures and protocol. After a resident consented, a trained research assistant administered the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975) to confirm that the resident was cognitively capable (MMSE score ≥ 13). Upon completion of the MMSE the research assistant conducted an in-person interview with each participant in their room or a place of their choosing. Participants were asked questions about their preferences, health, and well-being as a part of a larger study (PI: Kimberly Van Haitsma, NINR, R21: NR011334-01). The final sample consisted of 337 residents out of 580 who met eligibility criteria and 1,496 total resident population in the NHs. Participants were 71% female, 78% white with an average age of 81 (SD = 11.23).
The present study utilized the Preferences for Everyday Living Inventory for NH residents (PELI-NH; Van Haitsma et al., 2013; Van Haitsma, Abbott, et al., 2014), a measure developed to examine the content, meaning, and importance of psychosocial preferences in NH residents (Curyto, Van Haitsma, & Towsley). The PELI-NH includes 72 items that assess the level of importance of a variety of everyday preferences from leisure pursuits to personal care preferences that fall into five domains: social contact, growth activities, leisure activities, self-dominion, and enlisting others in care. Eight items are assessed through an open-ended question to gain insight as to the particular way that the subject prefers having that preference met. (1) How would you like staff to show you respect? (2) How would you like staff to show they care about you? (3) Who would you like involved in discussions about your care? (4) What would you like your daily caregiver to know about your needs when going to the bathroom? (5)What helps you feel better when you are upset? (6) How do you like to set up your bed for comfort? (7) When I greet you, what name would you like me to use? (8) What are your favorite hobbies? These open-ended questions are the focus of the present study. Respondents also rated these items on “How important is it to you to… [insert preference]” with a 4-point Likert Scale of 1 (very important), 2 (somewhat important), 3 (not very important), or 4 (not important at all).
Open-ended responses of questions were transcribed verbatim into Microsoft Excel. We approached data analysis of interview transcriptions using the qualitative content analysis procedures of Graneheim and Lundman (2004). An initial review of responses to each question was conducted by the first author (LRB). This review produced an understanding of general categorical responses to each question and served as an initial step in determining final response categories. Upon additional analysis, these initial categories were used to guide the development of more precise categories created by grouping words and phrases deemed similar in meaning through the content of the text and context of the questions. For example, initial response categories for to the question “How would you like the staff to show you they care?” were “Interpersonal Interaction,” “Professional Interaction,” and “Physical Contact.” Upon further analyses of the text within these three initial groupings, “Interpersonal Interaction” was parceled out into three unique categories (etiquette, attitude, and communication), “Professional Interaction” was divided into two separate categories (professionalism and care inquiry), and “Physical Contact” remained its own category. This procedure of refining initial categories was repeated for all questions and was guided by an expectation that residents may indicate differential preferences in the various domains explored by the PELI-NH (Heid et al., 2014). Coding notes documented the reasons for grouping similar preferences and distinguishing preferences into finalized response categories; this process generated a thorough interpretation and detailed description of various themes and patterns contained in the text (Hsieh & Shannon, 2005).
In an effort to enhance the representativeness and clarity of these categories, definitions, and examples that emerged through content analysis were discussed among authors (K. V. Haitsma, A. R. Heid, and K. Abbott). Weekly team meetings were held throughout the coding process in order to review the definitions and appropriate responses embedded within individual categories. This structured collaboration also allowed for multiple perspectives to refine categories and collapse other categories considered to be similar in meaning. Responses that were not easily ascribed to a specific category were discussed and assigned to an appropriate category when the research team reached 100% consensus. This process was repeated until all responses were coded. A primary concern in qualitative data collection is reaching a point wherein no new additional data are found that contribute to the concept (Glaser & Strauss, 1967). Theoretical saturation was reached after roughly 85% of the data were examined. For descriptive purposes, the quantitative importance ranking given by a participant to each associated PELI-NH item (i.e., “How important is it to you to… [insert preference]”) was used to calculate a mean importance ranking of each of the eight preferences.
The final sample consisted of 337 residents (Table 1) who answered eight open-ended questions about preferences for care. Qualitative content analysis of these questions generated 3,555 responses embedded within 61 categories (Table 2). Responses indicated great diversity in how residents define their preferences and in many cases, residents articulated multiple answers to each question. Further, we report importance ratings for each preference specification to indicate the range of importance associated with participant responses. Overall, the most important preferences were choosing who is involved in care discussions, staff showing they care, and staff showing respect. Table 2 also provides the descriptions, frequency, and importance ratings for preference responses.
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Preference Categories, Descriptions, Frequencies, and Importance Ratings
Discussions About Care
“Who would you like involved in discussions about your care?” yielded a broad range of preferences that included both family and nonfamily members (Table 2). Through free recall, residents reported individuals within (i.e., children, spouse, siblings) and outside (i.e., doctors, nurses) of the family that they preferred to be involved in care discussions. On average, residents reported 1.48 individuals whom they would like involved in care discussions (range = 0–4); only two residents indicated that they did not want anyone involved in such discussions. Residents (42%) most frequently indicated that they wanted their children/children in-law to be involved in care discussions; “My son, his wife and myself. But at this point the way my head is it has to be them.” In responding, 35% of residents specified that they wanted to be involved in their own care discussions, and 19% indicated that they wanted unspecified family members to be included in care discussions. Overall, nonfamily members were less frequently cited than family members as preferred individuals involved in care. These findings are comparable to patterns and composition of health discussion networks of NH residents (Abbott, Bettger, Hanlon, & Hirschman, 2012) and research on NH residents’ preferences for surrogate decision making (Ni et al., 2014). Among nonfamily members, residents most frequently preferred a nurse/nurse practitioner (8%), a doctor (6%), or a long-term services, and supports provider (5%) to be included in care discussions.
Staff Showing Care and Respect
Two items generated some parallel preference responses (“How would you like staff to show they care about you?” and “How would you like staff to show you respect?”). Attitude, communication, professionalism, and etiquette were preference specifications that emerged from both of these questions. Attitude was the most frequently cited preference for both staff showing the resident respect and staff showing the resident that they care. This preference included high-quality interpersonal treatment and interactions, as well as showing interest, kindness and compassion towards the resident. Residents identified staff attitude as an important opportunity to show care and respect: “By their kindness and their way of interacting with us, that does a lot of it. Their whole attitude means a lot. When you come in you’ve given up your whole life so to speak. You want that. You need that.”
Communication is another way that residents preferred the staff to show both respect and care. Preferences for quality and frequency of communication were identified through several examples such as taking time to talk to the resident or actively listening to the resident when they are talking. One resident said she felt respected when the staff: “Actually hear what I’m asking of them. Actually being interested in what I’m saying.” One participant spoke of communication as opportunity to be respected: “Listen to me and involve me in your discussions because I don’t like to sit in a room where everyone is talking about me but not to me.” Professionalism was also cited as an important aspect of feeling cared for and respected by staff; this preference category entailed the staff responding to immediate care needs, and the general competence of staff in following care routines. One example comes from a participant who said: “Be knowledgeable about the job… for example, I have a sore leg and they should know how to deal with that.” Another resident indicated that a professional relationship was more important than an interpersonal bond: “They are here to do a job. Not to like me or care about me. I don’t look at it like we have a bond or friendship.” Some residents suggested their frustration with the lack of professionalism they experienced: “For example, I rang the bell and I was in a lot of pain. The aide came in and asked me what I needed and I told her my foot needed to be adjusted it was in a lot of pain. I had to wait 3hours for her to come back to help” while others seemed satisfied with the staff “I’m very bossy. They know what I want and accommodate that.” Etiquette also presented as a mechanism by which residents feel cared for and respected by staff. Etiquette included staff showing manners and being polite: “As long as they are mannerly and not abrupt or ill mannered” honoring the privacy and independence of the resident: “Privacy, pulling (the) curtain around.”
Care inquiry and physical contact also emerged as two preferred ways for the staff to show residents that they care. Care inquiry was characterized by staff asking questions about care needs, listening to and addressing the needs of the resident. Residents frequently indicated the importance of staff asking questions “Ask certain questions to let you know they care.” Another resident stated, “Tell me the medicine I am taking and why I am taking it. Listen to me when I feel the medicine doesn’t agree with me.” Physical contact was another important part of staff showing they care about the resident. This category entailed the nature of physical touch and handling, as well as more specific preferences for what types of physical contact the participant valued. Some residents spoke about the gentile physical contact they wanted: “Handle us softly-physically.” Another resident said: “I like them to touch you nicely and gentle.” Other responses were more specific as one resident stated: “They give me a kiss and hug and that means a lot.” and another said: “Give you an extra little back rub with lotion.”
Three additional preferences for staff showing respect were generated from analysis: greetings, person-directed care, and reciprocity. Greeting preferences included the specific way that staff addressed and approached the resident. One resident indicated his partiality for staff entering his room and addressing him: “When you come, knock on my door. Greet me as Mr. [last name]. Mr. [last name] is a big thing to me.” Another resident acknowledged: “Some (staff) call me [last name]. I hate that.” The next category, person-directed care, referred to staff taking the time to get to know the resident, giving them what they want and understanding the particular desires and emotions of the resident as opposed to being focused on care tasks. Examples come from residents who indicated that staff can show respect by “Asking me… trying to be helpful rather than imposing what they think I want.” Finally, reciprocity emerged as a frequently cited preference for staff showing respect. One participant explains: “If you want respect you have to give respect. If you treat (staff) with respect, they will treat you with respect. Just like they want me to show them respect, they should show me respect.” Another participant responded similarly: “(They) do the best they can. Most are nice, if you treat them well they treat you well.” Many residents described multiple preferences for each item, as one participant describes the many ways that staff can show they care: “They know my name, listen when I want to talk, empathize, ask questions like about whether I should have this surgery or not.”
Six distinct preferences categories emerged in response to the question “What name would you like to be called?” These preferences include first name, last name, middle name, full name, nickname, and a salutation. Of these responses, residents most frequently preferred to be called by their first name.
When asked “What are your favorite hobbies?” residents indicated a wide range of inclinations, most frequently cited were creative hobbies (art, crafts, music, singing, woodworking), educational activities (reading, writing, learning, and academic discussions), and playing games (cards, bingo, puzzles, gambling, or collecting things). Some residents indicated that they were no longer able to perform certain hobbies either due to a physical impairment “Until I had my stroke, I crocheted a lot. None now. Watching TV and activities here.” or a sensory impairment: “Used to be computers, but now it’s hard to see.” or a lack of opportunity to fulfill their preference within the facility “Used to knit, crafts, reading. Not interested in anything they have here.”
In response to the question “What would you like your daily caregiver to know about your needs when going to the bathroom?” residents most frequently designated that they wanted their caregiver to know that they were independent and did not want or need assistance in any aspect of toileting: “I do most everything myself, I’m very lucky I can do a lot on my own.” Others commonly responded that they only needed transport assistance, specifically, traveling to and from the bathroom: “I need a transfer from the bed to my chair and then I do everything by myself in the bathroom.” Residents also wanted their caregiver to know about their medical issues pertaining to toileting (incontinence or bladder control issues) which often required them to take medications or utilize an adult brief or catheter: “I need assistance because I have colitis, and when I ring them I want them right here because I have no control over it, so that’s very important.” Other preferences that emerged, but were less frequently cited, included a preference to have staff assist them with cleaning themselves and a residents’ preference for privacy. One resident stated: “I don’t need assistance so much as privacy” although another resident indicated that their preference for privacy was not always met due to safety precautions: “They want to be right with you to do it so you don’t fall and hurt yourself.”
When asked “How do you like to set up your bed for comfort?’ residents replied with fairly specific responses. Most frequently, preferences concerned the physical adjustment of a bed (adjusting to a specific position or angle and positioning movable side rails); these adjustment preferences were often coupled with residents’ concerns for preventing injury, discomfort, bed sores, and breathing restrictions: “Raise and elevate (my) feet to help with fluid level in (my) legs.” Residents recurrently described preferences for pillows (number of pillows, and the softness or firmness of pillows). Other residents voiced preferences for blankets (number and fabric type) which were linked to medical issues: “To be covered with the top sheet. With multiple sclerosis I’m sensitive to heat.” or change in temperature: “In winter time, I like two blankets. In summer time, when it’s warm I wear one blanket.” Other preferences included aesthetics (the order and neatness of their bedding), mattress type (firm verses soft), and having personal items (their own blanket or a stuffed animal).
Feeling Better When Upset
Table 2 describes participant responses to the question “What helps you feel better when you are upset?” revealed coping preferences that align with established coping strategies (i.e., problem-focused, cognitive reframing, emotion-focused, social support, and religious coping; Folkman & Lazarus, 1988). Most frequently, residents indicated a preference for problem-focused coping, which typically included behaviors and cognitions toward solving the problem or forming a plan to solve the problem. Examples of this coping preference included working out the problem with other people involved: “Voicing my opinion, talking about it” or taking medication (prescription or over-the counter) to calm down: “Tylenol makes me feel better. I get a headache when I’m upset.” The goal of cognitive reframing is to change behavior in a way that increases well-being (Robson & Troutman-Jordan, 2013). Cognitive reframing emerged as another common way that residents felt better when they were upset; this strategy entailed efforts to make sense of the problem. Residents achieved cognitive reframing through managing the problem alone, thinking or reflecting about the issue and letting the problem go. One resident explicates their own cognitive reframing in their response “Be by myself. When I (am) hurt I cry on the inside and not on the outside so people don’t know when I’m upset.” whereas another says “I like to be left alone to solve my problem.” Another resident replied: “Keep a smile on my face. That has been my mantra. You can’t wear your heart on your sleeve. You have to let it go.” Emotion-focused coping included efforts to manage one’s emotional reaction to the problem through avoidance or withdrawal. Such preferences manifested through indulgence in food; “Maybe a cup of coffee and cake” other substances such as nicotine; “Having a smoke” or alcohol; “I’m not a drinker [laughing] although I do like wine” relaxation; “Just to sit and breathe and be calm” and emotional expression; “I have a dirty mouth and I use a colorful vocabulary to vent my anger.” Social support included eliciting help from others, such as asking advice or requesting assistance with the problem. Specifically, residents preferred to seek social support through engagement in social leisure activities; “I forget my problems by reading or looking at something worthwhile on the TV” being around friends; “Going to activities… I like something to do… to be with a crowd… and getting involved in groups.” Finally, religious coping was another preferred mechanism for feeling better when upset as one resident explains “Say a prayer and thank God for another day and bless my friends and family.” Religious coping also included reading the bible or attending religious services. It was common for residents to engage in multiple coping mechanisms. One resident replied: “I try not to get upset. I just pray it out and with the help of a little medication if I want.” Another resident stated: “Valium or a drink or prayer, they’re all pretty good.”
The open-ended questions addressed in this manuscript are embedded within the 72-item PELI-NH which was designed to assess which preferences for everyday living are most and least important to NH residents and the stability of such preferences. Although the quantitative PELI-NH data contributes to our breadth of knowledge of NH resident preferences, the open-ended items used in the present study are essential to strengthening the depth of this understanding. Within the larger goal of assessing NH resident preferences, qualitative inquiry is crucial to the development of a framework for understanding resident perspectives on preferred ways to having preferences met. This comprehensive understanding allows for staff to individualize care and is therefore essential to converting the NH culture from a medical model of care to a person-centered system (Koren, 2010). NH residents are key stakeholders in the culture change movement that shifts care toward a model of person-centered care and can play an essential role in helping NH management establish realistic steps (i.e., care plans tailored to resident preferences and specific types of staff training) for implementing person-centered care (Rosemond, Hanson, Ennett, Schenck, & Weiner, 2012). Similar to previous research that utilizes the reports of NH residents (White et al., 2012) results indicate a wide range of resident preferences and offer empirical insight into how NH residents respond to preference-based questionnaires (i.e., Van Haitsma et al., 2013). Because many residents had multiple preferences embedded within each response, the complexity of these responses substantiates the use of qualitative inquiry to thoroughly assess NH resident preferences. In addition to the qualitative responses of residents, we report importance ratings for each preference specification (Table 2) to indicate the range of significance associated with resident responses. The similar, and high, levels of importance lend credence to the need to assess these preferences for older adults. Each individual item was very important to individuals regardless of how individuals specified the preference being met. Therefore, understanding the specification for each of these preferences carries weight in care demonstrating to staff how these preferences can be adhered to. In particular, residents rated staff showing they care, staff showing respect, and choosing who is involved in care discussions as their most important preferences. We focus our discussion on these top three preferences.
Staff Showing Care and Respect
Oosterveld-Vlug and colleagues (2014) argue that NH residents’ dignity is maintained through being treated with respect by professional staff. Our findings support this work and further highlight how residents define respect and want to be shown respect. Attitude of NH staff emerged as a central preference for feeling both care and respect from staff; this theme has emerged in similar literature as a major concern for staff, family members of residents, and NH administrators (Park, 2010; Ren, 2013; Tse & Ho, 2014). Staff attitude has also been found to be related to differences in NH residents feeling at home (de Veer & Kerkstra, 2001). Another common preference for feeling respect and care, communication, is a significant aspect of patient-provider interactions that is often a source of conflict (Tsai, Tsai, Weng, & Chou, 2013). Communicative interactions between NH residents and staff are often a missed opportunity to deliver person-centered care (Savundranayagam, 2014). Our results confirm that communication is also an opportunity for staff to show care and respect. Thus, communication training is a logical priority for NH management to implement in their effort to achieve person-centered care and improve the lives of residents (Matusitz, Breen, Zhang, & Seblega, 2013). The professionalism of NH staff was another important way that residents felt cared for and respected by staff. Related research by Kim-Godwin, Baek, & Wynd (2010) indicates that professionalism among nurses varies by nationality and cultural values. Residents who interpret staff as engaging in unprofessional behavior may indeed feel that their personal care is not a priority to staff; this in turn may elicit doubts about the degree that staff care and respect the residents. Our results highlight that residents see staff responding to immediate care needs, and the general competence of staff in following care routines as professional behavior, yet, more research is needed to understand how such behaviors can be optimized among staff providing long-term services and supports. In addition, some of preferences may in fact conflict with one another. For example, one resident replied that the staff shows they care: “Come in here and hang out a little while. Don’t act like it’s a job to get out of here.” Although this resident prefers more social communication with staff, this may be interpreted as unprofessional behavior if it impedes the staff fulfilling job requirements.
Discussions about care
Individuals included in healthcare decisions constitute a health discussion network which characteristically consists of a smaller subset of individuals from a larger social network (Abbott et al., 2012; Perry & Pescosolido, 2010). Although not all residents wanted to be included in their own health discussions, deciding which individuals to include in their health decision network was highly important for residents. Consistent with previous research on the health discussion networks of older adults in NH settings (Abbott et al., 2012; Abbott, Stoller, & Rose, 2007) residents reported small networks made up of both family and nonfamily members. Health discussion network size may also reveal residents’ perceptions of social support (or lack thereof). Likewise, the composition of a health discussion network that contains doctors and nurses may suggest the degree of partnership, comfort, and trust that a resident places in clinical staff. In contrast, a health discussion network that exclusively contains family members may indicate some level of dissatisfaction with clinicians or NH staff.
Following the cognitive decline of an older adult, many health decisions will be made by proxy (Givens, Kiely, Carey, & Mitchell, 2009; Lopez & Guarino, 2011). However, recent work demonstrates that family member’ views of older adults’ preferences in care do not always align (Carpenter, Lee, Ruckdeschel, van Haitsma, & Feldman, 2006; Reamy, Kim, Zarit, & Whitlatch, 2011). Individuals whom a resident prefers to be involved in discussions about their care may be better qualified to make proxy decisions for the resident following cognitive decline. Identifying the individuals that a NH resident wishes to be a part of their health discussion network may also give NH administrators an opportunity to bring these individuals together to make decisions with the NH resident. Interventionists who aim to improve care decisions and discussions among NH residents’ may consider integrating this important preference into building adaptive intervention models. These findings may help to develop the education of residents and members of health discussion networks with regards to health decisions and advanced directives (Monturo & Strumpf, 2007; Ni et al., 2014).
Limitations and Future Directions
This work is strengthened by the use of systematic ground up data-collection methods that allow the voice of the resident to be the focus of analyses. However, several limitations warrant comment. The findings are restricted to a sample of NH residents and therefore are not generalizable to other populations. Further research that extends beyond the limited scope of NH residents’ preferences is necessary to gain a comprehensive understanding of preferences of older adults in different care settings. This extension could be extremely useful in developing models of person-centered care in other clinical populations by highlighting both differences and similarities in preference specifications. Further, this study utilizes reports from only one time-point and therefore reveals no information about how these preferences and priorities change over time. Longitudinal research is needed to understand how preference specifications change within this population and to understand the frequency with which preference assessment should take place (Van Haitsma, Abbott, et al., 2014). Finally, the NH culture change movement is an incredibly complex process (Munroe, Kaza, & Howard, 2011). There are many practical challenges associated with delivering person-centered care including the workplace culture and physical environment (Corazzini et al., 2013; McCormack, Dewing, & McCance, 2011). Translating the principles of person-centered care into one’s daily work routine is another major barrier to implementation (Hagenow, 2003). Although we suggest several connections between residents’ preferences and achieving person-centered care, these recommendations are but a small component of building and sustaining person-centered care within the NH setting; translating research into practice is complicated by many facets of the NH environment (Cammer et al., 2014).
Overall, our findings contribute to a growing body of research highlighting the ways that NH residents’ preferences can be met. Results here support the practice of both asking NH residents to indicate how important preferences are and for further specificity as to how their important preferences can be met. Clinicians can draw upon the findings presented here to learn specific ways that they can achieve residents’ preferences. Researchers can learn from the complexity of the preferences indicated to develop flexible intervention evaluations and future inquiry around how to promote and sustain person-centered care in NH settings. The findings presented here further demonstrate the need to have in-depth discussions and assessments with NH residents about their preferences to fully study and implement person-centered care practices.
This work was supported by the National Institute of Nursing Research (R21NR011334). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health. Additional support was provided by the Arnold S. and Bette G. Hoffman Internship Scholarship in Adulthood and Aging.
We would like to thank the research team members who worked diligently to collect this data, and the older adults who participated in the project. We would also like to thank Karen Eshraghi and Christina Duntzee for their work in supporting data collection.
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The Gerontologist (2015) doi: 10.1093/geront/gnv026 First published online: April 15, 2015
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