Understanding functional ability : Perspectives of nurses and older people living in long-term care

1 UNDERSTANDING FUNCTIONAL ABILITY: PERSPECTIVES OF NURSES AND OLDER PEOPLE LIVING IN LONG-TERM CARE Vilhelmiina Lehto a,b,Outi Jolanki c,a,b, Jaakko Valvanne d,b,e,f, Lauri Seinelä d,b,g,h, Marja Jylhä a,b a Faculty of Social Sciences, University of Tampere, Finland b Gerontology Research Center, University of Tampere, University of Jyväskylä, Finland c Department of Social Sciences and Philosophy, University of Jyväskylä, Finland d Faculty of Medicine and Life Sciences, University of Tampere, Finland e Geriatric Unit, Tampere University Hospital, Finland f Social Services and Outpatient Care, Welfare Services, Tampere, Finland g Purchaser for the Promotion for senior citizens welfare, Tampere, Finland h Pirkanmaan erikoislääkäripalvelu Oy, Tampere, Finland Abstract The functional ability of older people has come to play a significant role in their care. Policies and public debate promote active aging and the need to maintain functioning in old age, including among older people living in long-term care. This study explores the meanings given to functional ability in the interview talk of long-term care nurses (n=24) and older people living in long-term care (n=16). The study is based on discourse analysis and positioning theory. In this study, accounts of functioning differed between nurses and older residents. For the nurses, functional ability was about the basic functions of everyday life, and they often used formal and theoretical language, whereas for older long-term care residents, functional ability was a more versatile concept. Being active was promoted, particularly in the nurses’ talk but also sometimes in residents’ talk, thereby reflecting the public discourse about functioning. In their talk, the nurses positioned themselves in relation to functional ability as competent professionals and active caregivers. In residents’ talk, we found three positions: an active individual taking care of him or herself, a recipient of help, and a burden to nurses. To move in a direction that promotes activity and rehabilitative care, a better understanding of older people’s individual needs and their own views of functional ability is needed. Keywords Functional ability, functioning, long-term care, positioning theory, discourse analysis Highlights - Understandings of functional ability differ between nurses and long-term care residents - Public discourse is especially reflected in nurses’ talk about functional ability - Residents view their functional ability in relation to their life course and coping - Residents position themselves as active persons—not only as care receivers - Understanding different views of functional ability can contribute to better care This is the accepted manuscript of the article, which has been published in Journal of Aging Studies. 2017, 43, 15-22. http://dx.doi.org/10.1016/j.jaging.2017.09.001 2 Introduction Functional ability and long-term care In this study, we analyze the meanings of functional ability1 in the interview talk of long-term care (LTC) nurses and older people living in LTC. Functional ability is broadly understood here as an individual’s capacity to carry out the activities that he or she needs or wishes to carry out in a given environment. Functioning has become an important part of elderly care, not least because of the paradigm of active aging that highlights functioning and independence (Katz, 2000; World Health Organization, 2002a). In public discourse, those who remain active in their later years are seen in a positive light (Weicht, 2013). Active aging has been promoted worldwide; however, consensus has not been reached on its meaning, and it has been criticized for excluding the frail and dependent (Boudiny, 2013; Walker, 2002). Increasing age is associated with the risk of decreased functioning. LTC residents, who are often frail elders with progressive diseases, could be regarded as a group that is not achieving the ideal of active aging. However, geriatric rehabilitation programs and general aging policies aim to change the care culture in LTC by shifting it toward the promotion of activity (see Routasalo et al., 2004). Measuring functional ability plays an important role in aging research, and a range of instruments have been used to assess older people’s functioning (Guralnik & Lacroix, 1992). Activities of Daily Living (ADL) (Katz et al., 1963) is a traditional method to assess older people’s functional ability and is widely used in LTC (den Ouden et al., 2015; Grönstedt et al., 2013; Littbrand et al., 2009; Phillips et al., 2007). The Resident Assessment Instrument (RAI) is commonly used worldwide, including in Finland (National Institute of Health and Welfare, 2017), to assess LTC residents’ functioning and the quality of their care (Kahanpää et al., 2016; Onder et al., 2012). In addition to these, physical performance measures (Grönstedt et al., 2013; Peri et al., 2008) are used, to mention but a few. In gerontology and geriatric nursing textbooks, functioning is often classified into physical, mental or cognitive, and social categories (Guralnik & Lacroix, 1992; Harrison, 2013; Heikkinen et al., 2013). Guralnik and Lacroix (1992) add sensory functioning to this list. Based on a biopsychosocial model, the International Classification of Functioning, Disability and Health offers language and concepts for the discussion of disabilities and functioning, describing functioning as a mixture of not only health conditions but also personal and contextual factors (World Health Organization, 2002b). Long-term care in Finland In Finland, the municipality is responsible for organizing elderly care services. These services can be provided by the municipality itself, together with other municipalities, or the municipality can buy the services from a private provider (Finlex, 1982; Finlex, 2012). Elderly LTC consists of nursing home care, LTC wards in health center hospitals or community hospitals, and assisted living with 24-hour assistance and care (Johansson, 2010). At the end of 2015, 0.4% of Finns aged over 75 lived on an LTC ward and 1.7% in a nursing home, whereas 7.1% lived in assisted living facilities (Sotkanet Indicator Bank, 2017). Recent research shows that the use of LTC increases with advancing age and in the last years of life (Forma et al., 2017). Nursing homes and LTC wards are regarded as institutional care. In Finland, as in many other countries, there has been a shift toward the reduction of these institutions (Anttonen & Karsio, 2016; Ministry of Social Affairs and Health, 2013) in favor of so-called homelike facilities, such as assisted living with 24/7 care. In both institutional care and assisted living with 24-hour care, the majority of employees are practical nurses. There 1 In Finnish, the word toimintakyky, which refers to the extent to which an individual is able to carry out different activities, can be translated as “functioning” or “functional ability.” In the text, we use both, depending on the context. 3 are also other employees, such as registered nurses or physical therapists. A physician is available for consultation mostly by phone and may visit the facility a few times a month. On LTC hospital wards, the physician may be present daily. Policy debate around elderly services in Finland emphasizes the care providers’ responsibility to support the functioning of their residents. Function-focused care and the promotion of older people’s functioning are required by national quality recommendations and by law (Finlex, 2012; Ministry of Social Affairs and Health, 2013). In Finland, disability is the main criterion to qualify for a place in LTC. Moreover, policies such as “aging in place” are based on the expectation that care services support the idea of older people living in their own homes for as long as possible (Ministry of Social Affairs and Health, 2013). This means that they usually have remarkable disabilities by the time they move into an LTC facility. Functional ability is, thus, an important issue among those living in LTC. In addition to promoting functioning, a major principle in present-day LTC is “person-centered care,” which emphasizes the self-determination of older people and partnership between the individual and the caregiver rather than the treatment of older people as objects of care (McCormack, 2003). In Finland, person-centered care is expected by the law (Finlex, 2012). The aim of this study This study analyzes the interview talk of nurses and older people living in LTC regarding functional ability in the context of LTC. To our knowledge, no previous study has investigated this theme. The ways in which people talk can be seen as not only reflecting but also constructing the reality (Burr, 1996). We have approached functional ability as a discursive phenomenon. The ways in which LTC nurses and residents talked about functioning were examined by drawing on discourse analysis and using the concept of positioning. Position analysis has been utilized in elderly care, for instance, when studying client engagement and the power relations between residents and staff (Petriwskyj et al., 2014). Taking particular positions and using certain discourses can have both positive and negative consequences and can even contribute to tolerance for the mistreatment of older people in care homes (Sabat, 2003; Stevens et al., 2013). Therefore, discourses in care facilities have significance for good care and are worth looking at more closely. An analysis of the interview talk of LTC nurses and residents can help us to understand the care culture in these facilities. Although originating from research interviews instead of from an authentic care situation, we think that the ways of talking in interviews reflect social and, for nurses, professional norms, as well as public discourses concerning elderly care and functioning (Allen et al., 2013; Harré et al., 2009). Material and methods Interviews We conducted semi-structured one-on-one interviews with LTC nurses and older LTC residents. The interviews took place in eight different LTC facilities in two cities in southern Finland with populations between 215,000 and 230,000. After acquiring approval for our study from the cities’ ethical committees, we requested a list of the care facilities where the cities offered LTC for older people. We included all the facilities using the RAI (National Institute of Welfare, 2017). We excluded two facilities where the first author had previously worked. From the included facilities, we chose two in each city that provided institutional care and two that provided assisted living with 24/7 care. After we contacted these facilities, two assisted living facilities declined to participate because they could not find eligible participants for this study. Consequently, two more assisted living facilities were chosen. In the other city, there was only one hospital providing 4 institutional care that was eligible for this study. Two different wards in this hospital were contacted. One of these wards declined to participate, so the hospital was given an opportunity to choose another ward to participate (Table 1). Table 1: Participating facilities and number of nurses and residents interviewed City Care facilities Public/private Nurses Residents #1 nursing home Public n=3 n=2 nursing home Public n=3 n=2 assisted living facility Private n=3 n=2 assisted living facility Private n=3 n=2 #2 LTC hospital ward Private n=3 n=2 LTC hospital ward Private n=3 n=2 assisted living facility Private n=3 n=2 assisted living facility Private n=3 n=2 Total n=8 n=24 n=16 The ethical committee of the local hospital district and the manager of each facility approved our research plan. The first author contacted the facilities by e-mail or by phone, after which written information about the study was sent to the manager of each facility. The care facilities were asked to choose three nurses and two residents to participate in the study. Eligible residents had to have no more than a minor memory impairment to ensure that they could give informed consent. This was confirmed with an adequate memory test score (Mini Mental Status Examination MMSE>18) or Cognitive Performance Scale score (CPS≤2). The interviews in the care facilities were carried out by the first author. The interviewees were told that the interviewer was also a registered nurse. There were 40 one-on-one interviews altogether. The nurses (n=24) interviewed for this study had worked as nurses for between one and 40 years. They had been working between one and a half months and 20 years at their current care facility. Nearly all (n=23) the nurses were female. Nineteen of them were practical nurses and five were registered nurses. The residents (n=16) participating in this study had lived in their current care facility for between one month and seven years. Two of them could not give an answer about how long they had lived there. More than half (n=11) of the interviewed residents were female. The interviews were conducted during autumn 2016. The interview guide was formulated jointly by authors 1, 3, 4, and 5 utilizing the expertise and experience of the group. The themes of the interviews—functioning and rehabilitation—were decided beforehand, but the interviewees were given the opportunity to elaborate on the themes. Lasting between 16 and 58 minutes, the interviews were audio-recorded with the consent of the interviewees and transcribed verbatim. The analysis of this study concentrated on the parts of the interviews in which the participants were asked about the functional ability of older people living in LTC. The nurses were asked to describe the meaning of “functional ability”—that is, what they were talking about when they discussed functional ability in the LTC context. The residents were asked how they would evaluate and describe their own functional abilities. Analysis 5 This study draws on discourse analysis based on social constructionism as an approach to understanding the meanings constructed in participants’ talk (Burr, 1996). Discourse analysis focuses on how language is used and the functions that the language has (Burr, 1996; Potter & Wetherell, 1987), as opposed to merely reporting what is said. The first stage of the analysis was to read and reread all the transcribed interviews several times and to get to know the data. During this stage, notes were written in the transcripts, and preliminary coding was done. The aim was to find recurrent patterns of talk—that is, in what way the participants defined functional abilities. These patterns of talk are referred to as discourses. Drawing from positioning theory (Allen & Wiles, 2013; Harré & Lagenhove, 1999; Harré et al., 2009), we were interested in how participants positioned themselves in relation to functioning. For this self-positioning, we use the term subject position. The next stage of the analysis concentrated on how the patterns of talk—the discourses— constructed different subject positions. With each discourse, we examined what kind of position it was constructing for the speaker—that is, what kind of function the discourse had. We noticed that in some cases, several discourses represented the same subject position. Positions can change, and repositioning can even occur during a single speech act (Langenhove & Harré, 1999, pp. 17–18), resulting in the overlapping and intertwining of the positions. In the analysis, one interview excerpt could be categorized into several discourses. During the process, authors 1, 2, 3, and 5 read all the data and made their individual observations based on the research aim. All the authors then discussed these findings and the preliminary analyses by the first author to reach a consensus about the identification of the discourses and the positions they represented. The first author then conducted the final analysis after several, frequent consultations with the other authors. Results In the data, we found different subject positions for both the studied groups. As is typical, the subject positions were often overlapping rather than separate. In the excerpts, all the names are pseudonyms, and VL refers to the interviewer. The nurse as a competent professional and active caregiver We looked at nurses’ talk in the interviews using the discourse analysis approach to see what kind of subject positions the nurses constructed in their discourses on functional ability. We could distinguish two different subject positions: competent professional and active caregiver (Table 2). The difference between these two is that when the nurses positioned themselves as competent professionals, they used theoretical, formal, and abstract language. When they positioned themselves as active caregivers, they talked about the concrete daily activities of the residents that affected their work as nurses. In several cases, however, these positions intertwined. Table 2: Nurses’ positions in their interview talk about functional ability: Competent professional and active caregiver Group Subject position Discourse Excerpts showing how functional ability is described 6 Nurses Competent professional Functioning as an abstract category Functional ability as independence Functional ability as part of daily life Functional ability as a target of nursing interventions So, it is that. Mental, physical, cognitive, this is the wholeness of the human being. Are you able to do anything yourself, or is everything done for you. It is that you cope in your daily functions. We always try to see and find those resources everyone has, and [to see] what one can do. And a little more from there like, then, with rehabilitative nursing, we try. One gets more, like, what one thinks one is capable of. Active caregiver Functional ability as tangible daily activities Is one able to go to the toilet and to change one’s clothes. Is one able to bathe, take care of hygiene, brush one’s teeth. Does one remember to come to eat or how to eat. Functional ability had several meanings. In the next excerpt, Laura, a registered nurse working in an assisted living facility, replies to the question about functional ability: VL: Okay. Well, could you tell me in your own words what it means when we’re talking about the functional ability of older people living here in this kind of care home? Laura: What functional ability? VL: Functional ability. Like when we’re talking about functional ability— Laura: Err, in my own words. VL: What does it mean? Laura: Well, to me, when I think of functional ability, I think of this kind of physical and psychological well-being. What a resident can do by himself and in what he needs help. At first, Laura is somewhat hesitant to answer the interviewer’s question. She asks, “What functional ability?” This could be interpreted in different ways: Either Laura has not quite heard the question, or she presumes that there are different domains of functional ability and is asking which domains she should talk about. The interviewer tries to clarify that, in this case, she wants Laura to talk about functional ability as a whole. Laura then defines functional ability in a very objectified way, dividing it into two domains. She uses abstract concepts: “physical” and “psychological” well-being. Mentioning different domains was typical when talking about functional ability as an abstract category, and the domains that different nurses mentioned were largely the same. This talk is not a part of everyday language; rather, it is theoretical and likely draws on a formal description of functioning that was learned during their studies, as well as textbooks and policy papers. Laura then describes functional ability as an activity that a “resident can do by himself” or, conversely, as “in what he needs help.” She constructs functional ability as independence when she states that it is an activity 7 that a “resident can do by himself.” The dichotomization of residents as either independent or bedridden was repeated in the nurses’ talk. Functional ability was described with regard to how independent one was and what one was able to do without help. In the nurses’ interviews, functional ability was linked to nursing interventions. These were, for instance, the evaluation of functional ability, rehabilitation or function-focused care, and individual care. By describing these, the participants were efficiently constructing themselves as both competent and good nurses. In the next excerpt, Liisa, a registered nurse who works on an LTC ward, tells the interviewer how she understands functional ability. The interviewer refers to this facility as a nursing home. RAI is the instrument that the nurses use to evaluate the residents’ functioning. VL: Okay. Well. How would you describe, in your own words, what it means when we’re talking about the functional ability of a resident living in this kind of nursing home? Liisa: Well. Usually, when we’re doing care plans, as we still do for everyone, every six months, we check it after the RAI, after we fill the RAI instrument, we always update it. Quite often, there will be that sentence that we try to maintain the functioning that is still left. Like. No, there isn’t going to be that much of something, like, else. VL: Yeah, right. Liisa: Like, we aim for it to not get to a worse condition. Here, Liisa begins her account by referring to the written care plans that nurses make for every resident. She states that they are updated every six months after the nurses fill out the RAI measurement instrument. She also explains that they use “that sentence”—a specific sentence, in which they mention the possibility of maintaining residents’ functioning. She also talks about herself as a part of nurses as a group by saying that “we” update it and “we” try to maintain the functioning. This kind of talk positions nurses as actors in maintaining residents’ functioning and residents as objects of nurses’ actions. She even strengthens her statement by saying that they “always” update the care plans. We categorized talk about making and updating care plans, measuring functioning using the RAI, and supporting functioning as a discourse of functional ability as a target of the nurses’ intervention. This discourse was used to construct the position of a competent professional, demonstrating knowledge about nurses’ obligations and tasks in terms of the care system. We interpreted discourses about functional ability as an abstract category, functional ability as independence, and functional ability as a target of nursing interventions as reflecting the subject position of a competent professional. Discourses in this position included talk in which nurses made functional ability appear as a broad concept that is quite distant from the daily life of the care facility. Several of the nurses used the same phrases: “how independent one is” or “physical and psychological well-being.” By positioning themselves as competent professionals, the nurses simultaneously depersonalized the residents as a group of frail people in need of help. When positioning themselves as competent professionals, the nurses described functional ability as daily life in the care facility. In response to the question about what functional ability is, a common phrase was simply “daily activities” without the inclusion of any details. Contrary to this rather abstract vocabulary of the subject position of the competent professional, the position of the active caregiver was characterized by more concrete and detailed descriptions of physical activities, such as eating, moving, getting dressed, and taking care of one’s own hygiene. In some cases, participation in social activities was also mentioned. In the following excerpt, Kirsti, a practical nurse who has worked on this LTC ward for almost 30 years, describes 8 functional ability as different tasks in daily life. What is interesting is that in her talk, the positions of the competent professional and active caregiver overlap and exist at the same time. VL: Okay. Well. Mm, how would you describe, in your own words, what it means when we’re talking about the functional ability of old people living in a nursing home like this? Kirsti: [Sighs] Mm. Well, it is, after all, coping. With all the tasks of the day: eating, dressing, washing. All the daily chores. Totally. And, indeed, moving, and eating, and. Mm participation and. Everything that belongs to life how you yourself, how, how we, we who still have everything left. Yeah and the social side. Like how. It is exactly the same in institutions, in the nursing home, like nevertheless, that. Sure, it is like that. They wouldn’t be in an institution if they wouldn’t have in some area-. These days, you almost should, have in every area, like, well, a need of help or a need of assistance or a need of guidance. Here, Kirsti is stating that functional ability in a nursing home is “coping with all the tasks of the day.” She connects functional ability to everything that happens in a nursing home during a day: “all the functions,” “all the daily chores,” and “everything that belongs to life.” These statements paint a big picture of functional ability as something broad, inclusive, and difficult to describe because it is “everything.” Describing functional ability was not an easy task for the nurses. In several cases, the nurses’ talk was very hesitant. This can be seen in the previous excerpt with Kirsti. She uses several filler words when trying to explain her understanding of functioning. Several of the nurses underlined that what they said were only their own thoughts and opinions and not necessarily the opinions of nurses as a group. This was interesting, because although they did not present themselves as part of a group, their views and the phrases they used were very similar. Kirsti is constructing the subject position of the active caregiver when she specifies the different daily activities: eating, dressing, washing, and participation. At the end of her account, she states that they would not be in an institution if they were not in need of help. Hence, she is justifying the residents’ need for their help. Even when she says that “you almost should have [the need for help] in every area,” she is stating that the residents do have a need for help if they are living in a nursing home. This could also be regarded as a discourse that constructs the other subject position: a competent professional. The competent professional knows that residents’ functioning is evaluated before they enter a care home and that a decline in functioning is a prerequisite for admission. When she positions residents as people needing nurses’ help, she simultaneously positions nurses as active caregivers and justifies both the residents’ place in a nursing home and the nurses’ role as their caregivers. LTC residents as active individuals and recipients of help Older LTC residents’ talk in interviews about functional ability was not as abstract or formal as nurses’ talk. The concrete aspects of functional ability were described not only in terms of what residents could do by themselves but also which tasks they needed help with. The residents described functional ability as not only daily chores, such as eating or dressing, but also as activities that were not necessarily basic daily tasks but were, nevertheless, important to them. Functional ability was connected to resilience. The residents used different aids and managed their lives so that they were able to do the activities they were currently able to do, even if these were done with difficulty. The residents talked about the changes in their functional abilities. These changes were often due to different diseases or impairments. Change could also be described through experiences in previous health-care 9 environments. The residents compared their functional abilities with those of other people. Although many assessed their own functional abilities favorably compared with those of other residents, some of them stated that their conditions were no longer good. Functional ability was linked to their own personal life course: what had been, what was, and what seemed to be the future or feared future. We could find three different but intertwining subject positions in residents’ interview talk (Table 3): an active individual taking care of him or herself, a recipient of help, and a burden to the nurses. Table 3: LTC residents’ subject positions in their talk in interviews about their own functional abilities: active individual taking care of him or herself, recipient of help, and burden to nurses Group Subject position Discourse Excerpts showing how functional ability is described LTC residents Active individual taking care of him or herself Independence Managing to maintain good functional ability Functional ability as coping It [functional ability] is pretty good. I do know how to dress myself and (VL: Yes). And I cleaned up, too, when I was at home by myself-. By myself everything and washed the laundry. Well, I wouldn’t, wouldn’t say it [functional ability] is poor yet. It is poor when one stays-. When in everything one needs help. But I don’t need help yet with everything. I have poor vision, that I must say: that I have poor vision. That restricts me. But as long as I see with my glasses and then with the magnifying glass, it works. Help recipient Poor functional ability as physical illness or impairment Present functional ability as compared with that in the past Well, the whole functioning of my left side has been lost (VL: Yes). In my hand and foot. (VL: That’s right). The result of an infarct. These hands are-. They have done a lot of work before that I’m not able [to do] anymore. Burden to nurses Functional ability as a means to help nurses’ work Functional ability as not needing help from nurses I do try here, too; when there’s only a few nurses, I try to help. I dress myself on my own, hands and all. These kind of things. Nurses don’t help almost at all. In this next excerpt, the interviewer is asking Aino, a woman who lives in an assisted living facility, how she would evaluate her functional ability. The interviewer has just asked Aino how she would evaluate her health status—whether it is very good, quite good, quite bad, or bad—to which Aino has replied that her health is quite bad. VL: Quite bad. Well, how would you evaluate your functional ability using this same scale? 16 den Ouden, M., Bleijlevens, M. H. C., Meijers, J. M. M., Zwakhalen, S. M. G., Braun, S. M., Tan, F. E. S., & Hamers, J. P. H. (2015). Daily (in)activities of nursing home residents in their wards: An observation study. 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