In the context of persistent and pervasive concerns about the quality of care in residential care facilities (RCFs) internationally (Rolland et al., 2014), person-centered care (PCC) has been identified as a critical approach to improve quality of care and quality of life for residents (Grabowski et al., 2014; Zimmerman, Shier, & Saliba, 2014), as well as quality of working life for staff (Edvardsson, Fetherstonhaugh, McAuliffe, Nay, & Chenco, 2011; Koren, 2010). PCC transforms an institutional model of care whereby staff assess and plan care for residents (and residents are perceived to be passive recipients of care) to an approach in which residents' values, preferences, and needs drive what care is provided and how it is implemented.
PCC is a comprehensive philosophy of care whereby individuals' values and preferences are elicited and shape all aspects of their care (Ekman et al., 2011). PCC is accomplished by establishing and maintaining relationships among older adults, their family members, and care providers to become partners in accomplishing care goals (Ekman, Hedman, Swedberg, & Wallengren, 2015). Thus, a person-centered framework is a dynamic, continual process that reflects changing goals and preferences elicited from residents and their family members, rather than from RCF staff alone (Dellefield & Corazzini, 2015). In turn, RCF staff modify care routines to implement individualized approaches. Moving from provider-directed to person-centered assessment and care planning requires changing these relationships to allow residents, families, and staff to engage in new ways of planning and providing care (Corazzini et al., 2013; Corazzini & Anderson, 2014).
PCC is increasingly recognized as a fundamental human right (Jonikas, Cook, Fudge, Hlebechuk, & Fricks, 2005; Jönson & Harnett, 2016), reflected in recent long-term care policy changes in the United States and Europe (Edvardsson et al., 2016). Trends are occurring across European countries (Harding, Wait, & Scrutton, 2015), including person-centered requirements in how care services are provided. Examples include the United Kingdom's National Health Services' Five Year Forward View Plan (NHS England, 2014) and the Swedish Association of Health Professionals' strategy for PCC (Harding et al., 2015). However, despite this increasing emphasis on the importance of person-centered assessment and care planning, there is almost no evidence of its widespread adoption and little empirical evidence of how this protocol should be implemented in everyday practice (Edvardsson & Innes, 2010; Garcia, Harrison, & Goodwin, 2016; Harding et al., 2015).
Urinary incontinence (UI) is a pervasive and persistent challenge for residents in RCFs worldwide, and is related to increased frequency of adverse events such as falling, infections, polypharmacy, and pressure ulcers, as well as a variety of other health issues (Stenzelius, Westergren, Mattiasson, & Hallberg, 2006). Studies show that 70% to 80% of older adults living in RCFs have UI, which is a contributing factor in decisions to move older adults from their homes to an institution (Sitoh et al., 2005). Therefore, UI was chosen as the exemplar clinical outcome with which to evaluate the preliminary effects of implementation of a person-centered approach. The overall purpose of the current study was to examine the implementation of a person-centered approach focused on assessment and care planning during UI and to explore its impact on quality of life and care quality in older adults in RCFs.
Conceptual and Theoretical Foundation
Ekman et al. (2011) divide the concept of PCC into three key components. First, providers must initiate a relationship with the resident and family to elicit the older adult's individual narrative or contextualized understanding of his/her health status situated within a life-course perspective. This narrative must derive entirely from the resident's perspective and reflect his/her values and goals. Second, this narrative must be integrated into assessment and care planning that reflect the resident's goals for treatment and illness management, not goals of the provider. A provider's technical health care knowledge supports and facilitates the resident's achievement of these goals instead of directing them. Third, the resident's narrative must be embedded in documentation and implementation of the care plan. Consistently and systematically integrating the narrative ensures that it continues to shape the ongoing dialogue or partnership between provider and resident and his/her family, evolving as the resident's experience of his/her illness evolves (Olsson, Jakobsson Ung, Swedberg, & Ekman, 2013; Phelan & McCormack, 2016).
A person-centered approach, according to Ekman et al. (2011), has demonstrated significant positive effects on quality of care and self-efficacy among patients with cardiovascular disease in acute care settings (Ekman et al., 2012; Fors et al., 2015; Fors, Taft, Ulin, & Ekman, 2016; Ulin, Olsson, Wolf, & Ekman, 2016). However, despite studies exploring the effect of implementing a person-centered approach in RCFs (Edvardsson et al., 2016; Edvardsson & Innes, 2010), there is still a need to advance the knowledge of the benefits of PCC for older adults.
The purpose of the current study is three-fold. First, a person-centered approach (Ekman et al., 2011) to incontinence care was operationalized for older adults with cognitive impairment living in RCFs. Second, the feasibility of implementing this new approach was assessed in two RCFs and compared with a control facility. Finally, the following preliminary effects on participants were evaluated: impact on assessment, care planning, quality of life, and quality of care.
The study was conducted in accordance with the principles for medical research involving human participants outlined in the World Medical Association (2018) Declaration of Helsinki. All participants gave informed written consent after receiving verbal and written information about the study. The study was approved by the Regional Ethics Board in Gothenburg.
A controlled prospective cohort study was performed at three RCFs in western Sweden for adults 65 and older. Inclusion criteria were: all residents >65 years old with a cognitive status score of <23 on the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975), and RCF staff including nurse aides and nurses. The mix of professional and nonprofessional staff was equivalent in all three RCFs in terms of one nurse per RCF with an overall responsibility for the care and everyday actions performed by nurse aides. The three RCFs were situated in a rural part of a city of 500,000 inhabitants. The three RCFs were run by the municipality and situated in close geographic proximity. Two RCFs were randomly assigned to the intervention and one was assigned as the control. All residents living at the three RCFs, together with a close relative (e.g., partner, adult child), were informed orally and in a written document about the study and asked whether they were willing to participate. If interested, and after they had given informed consent, they were included in the study. Of 111 residents at the three RCFs, 79 (71%) consented to participate.
Demographic data included age and gender. Cognitive status of residents was assessed using the MMSE at baseline. The MMSE is a sensitive, valid, and reliable 30-point questionnaire used extensively in clinical and research settings to determine cognitive impairment and in medicine and allied health to screen for dementia (Folstein et al., 1975). The MMSE is also used to estimate the severity and progression of cognitive impairment and to follow the course of cognitive changes over time. As recommended in the literature, a cut-off score of <23 was used to classify cognitive impairment.
At baseline, participants were between ages 68 and 99 (mean age = 83.9 [SD = 8.72] years) and had a mean MMSE score of 9.28 (SD = 7.94). Of all participants, 40.1% were men. There were no significant differences according to age and cognitive status between men and women.
Data were collected prospectively from 2013 to 2015, before implementing a person-centered approach (baseline), during implementation (Follow Up 1), immediately after the end of the implementation program (Follow Up 2), and 6 months later (Follow Up 3). The person-centered approach was implemented for all residents at the two intervention RCFs. Data were only registered for individuals who gave informed consent to participate.
Implementation of a Person-Centered Approach Focusing on Incontinence Care
The design of the implementation of a person-centered approach at the two intervention RCFs was based on the assumption that health care workers are experienced and competent individuals who want to cooperate, share their experiences, and create a PCC environment if they are given the proper resources and opportunities. Twenty health care workers of the total number of staff (N = 100) were purposively recruited to take on the role of facilitators. This sample represented a mix of nurses and nurse aides who varied in age, gender, and work experience, and was evenly distributed between the wards of the two intervention RCFs. The rationale for adopting this recruitment strategy was to learn the effect of nurturing a selected group to take the lead in coaching and supporting their colleagues in implementing a PCC program. To enable these individuals to implement such a program, they were invited to join the program during the 10 months of its implementation (January to October 2013). A prerequisite for the participating RCFs was an engaged management that provided the necessary conditions for staff to adapt the PCC approach. The necessary conditions included staff training and assessment being conducted during normal working hours.
The purpose of the education and training program, which comprised five sessions, was to implement PCC in health care providers' daily work in continence promotion and incontinence management. The training comprised how to encounter and interview residents from a person-centered approach, how to transform significant elements of residents' narratives into their care plan, and how to evaluate the effect of individualized actions taken. In addition, participants were given specific education and training in incontinence assessment, planning, caring actions, and outcome follow up.
The training was designed to teach participants how to tailor a person-centered incontinence care plan at their RCFs in partnership with staff who did not attend the training (i.e., participants were expected to implement these new approaches with staff between sessions). Examples included supporting staff to perform a basal assessment of residents' unique incontinence problems and, based on that assessment, suggest a selected strategy, such as toilet assistance or a specific incontinence product rather than a standard issue product. The 10-month program ended with participants creating guidelines to make the change toward person-centered incontinence care sustainable, including how to orient new staff to acknowledge resident preferences, provide PCC, implement incontinence care and tools to enable change in the organization, and ensure ongoing implementation and administrative support.
Identifying the Person-Centered Approach During Implementation
PCC planning was defined as documenting in residents' health care records that their narrative had been elicited by staff and that significant parts of their narrative had been integrated in the written care plan, including incontinence care intervention. Thus, for each resident, participants coached their colleagues in how to elicit the individual resident's life story, which was captured as a narrative in the care plan to guide staff's engagement with residents and inform tailoring of the care plan. A sample excerpt from the notes for one resident included this narrative: “Mrs. Blom spent 50 years as an elementary school teacher in a small, rural village.” This notation in the resident's care plan informed staff about planning activities involving groups of children, which they thought she might enjoy. Another notation that integrated an element of the resident's narrative into his incontinence care plan read as follows:
Mr. Davidsson had a life-long habit of rising early to work on his farm; therefore, we will support Mr. Davidsson when he awakens at 5 a.m. to help him to the toilet and then back to bed, to support continuity in his life-long early morning waking while simultaneously supporting him being continent.
Figure 1 provides a schematic overview of the implementation of the person-centered approach.
Implementation of the person-centered care approach.
Older adults' health care records were assessed for the following outcome measures by the research team using a template developed for the current study.
Process Outcome Measures of the Person-Centered Approach. The outcome of the person-centered approach was initially examined by the research team in residents' records in relation to the documentation of the resident's life story and whether the personal health plans were based on facts. Measurable goal setting relating to personalized incontinence care was registered, as well as whether the action taken was documented and evaluated against the personal goal.
Impact Outcome Measures of Participants' Quality of Life. Quality of life was measured using the Swedish version of the Quality of Life in Late-Stage Dementia scale (QUALID; Falk, Persson, & Wijk, 2007), an instrument that measures 11 observable behaviors (e.g., smiling, signs of discomfort, or interaction with others) indicating activity and emotional states. Residents' behaviors were assessed by the professional caregiver (i.e., nurse or nurse aide) along with complementing interviews with residents' family members. Ratings were based on observations of behaviors during the past 1 week. The 11 observable behaviors were rated on a 5-point Likert scale from 1 (almost always) to 5 (never or rare). The QUALID scale has demonstrated adequate reliability and validity with older RCF residents in Sweden with MMSE scores of <25 (Falk et al., 2007; Weiner et al., 2000). Reliability and internal consistency for the QUALID scale was good (0.7 ≤ α < 0.9) during all measures in the current study.
Impact Outcome Measures of Participants' Quality of Care. Initially, the research team examined the health care plan for residents' status of continence, registered in the data template as either continent (1 p), partly continent (2 p), or totally incontinent (3 p). Continent was defined as being totally independent, using the toilet with no need of any containment product; partly continent was defined as continent if assisted when needing to go the toilet, with or without use of a containment product; and totally incontinent was defined as being dependent on containment products 24/7 and not managing by oneself. Of the 79 residents, none were continent, 58 (73%) were partly continent, and 21 (27%) were totally incontinent.
Assessment of incontinence care included the following questions: Has basal assessment of incontinence been conducted? Have person-centered actions been taken regarding incontinence? Has the resident been given personally adapted incontinence aids?
The quality of care measures were selected according to the evidence base. To make an individual care plan for incontinence, it is necessary to conduct a basal assessment of continence (Stenzelius et al., 2006). Implementation of a PCC approach calls for personally tailored actions (Ekman et al., 2011). If a basal continence assessment had been conducted after resident's admission to the RCF, the status of incontinence was registered as 1 p. If no basal continence assessment had been performed, the status was scored as 2 p. A basic assessment of continence comprised the nurse asking the resident and/or family member about the resident's continence status, making observations of the resident's behavior when wanting to go to the bathroom, and if partly or totally incontinent, creating a bladder diary. If there was documented information on personally adapted incontinence aids in the resident records, it was registered in the template as 1 p, and if not, as 2 p. Other information collected from residents' records after baseline as indicators of a more person-centered approach included frequency of toilet assistance compared to baseline. When assistance to the toilet was documented in the resident's record as a personal tailored action to promote continence, an increase in its frequency was interpreted as a positive sign of personalized care.
Descriptive statistics were calculated for all variables. QUALID scale scores and MMSE scores among residents were analyzed using one-way analysis of variance (ANOVA). A pairwise comparison of scores at baseline and follow up was performed using Fisher's least significant difference (LSD) test. Comparisons of residents' overall QUALID scale scores, MMSE scores, and number of PCC interventions between gender and number of UI assessments were conducted using Student's t test. The same test was also used when measuring whether there was a connection between resident's age and performance of UI assessment. All reported p values were based on two-sided tests, with a significance level of 5%. All items were phrased so that strong agreement indicates negative quality. Therefore, higher overall scores indicate lower quality of life from a resident's perspective.
The effect of the implementation of a person-centered approach, measured as number of PCC actions for incontinence, was examined using Fisher's LSD test. To measure the strength of the linear relationship between resident age and number of PCC actions for incontinence and QUALID scale scores, Pearson's correlation coefficient was calculated. The same test was used in relation to age, number of PCC actions, QUALID scale scores, and MMSE scores.
The relationships among gender, type of incontinence aid used, and incontinence assessments from baseline and Follow Up 1, 2, and 3 were examined using Pearson's χ2 test. The same test was used when comparing the use of incontinence aids with the number of incontinence assessments in the intervention and control RCFs. Missing data due to staff failing to register one or more items or participant withdrawal before the end of the study due to decreasing health or death were replaced using the expectations-maximization algorithm. SPSS version 20 was used for all statistical calculations.
Implementation of a person-centered approach in the intervention RCFs increased the number of UI assessments performed (p < 0.05). The PCC interventions of UI, as measured by the number of caring actions conducted during and after implementation of the person-centered approach, were significantly higher during and 6 months after implementation. In addition, residents' quality of life increased compared to controls where no person-centered approach was implemented.
Demographics and Sample Characteristics
Of 79 residents in the three RCFs who gave informed consent to participate, 54 residents answered the questionnaires at baseline (control, n = 14; intervention, n = 40), 47 at Follow Up 1 (control, n = 11; intervention, n = 36), 31 at Follow Up 2 (control, n = 7; intervention, n = 24), and 37 at Follow Up 3 (control, n = 9; intervention, n = 28).
QUALID Scale Score Analysis
No statistically significant mean differences were found among study and control groups in regard to quality of life. Before the start of the PCC approach, mean quality of life score across all settings was 22. During Follow Up 1, mean score at the intervention RCFs was 24.5 versus 23.18 at the control RCF (p > 0.05), indicating a decrease in quality of life during the implementation phase, as higher scores indicated lower quality of life. In contrast, quality of life increased at the intervention RCFs at Follow Up 2 and 3 compared to the control RCF (Follow Up 2, 22.5 vs. 25.28, respectively, p > 0.05; Follow Up 3, 22.4 vs. 24.44, respectively, p > 0.05) (Figure 2).
Comparison of residents' Quality of Life in Late-Stage Dementia (QUALID) scale scores at residential care facilities (RCFs) 1 and 2 and the control RCF between measures performed at baseline and during (Follow Up 1) and after (Follow Up 2 and 3) the intervention.
ANOVA showed that the positive effect of the person-centered approach in the intervention RCFs on the number of PCC actions for incontinence was significant (F[3, 114] = 3.45, p = 0.019). This finding was not observed in the control RCF. Post-hoc comparisons using Fisher's LSD test revealed that the number of PCC actions appeared to be significantly higher at measures performed during and 6 months after implementation of the person-centered approach (Table).
Pairwise Comparison of Person-Centered Care Interventions for Urinary Incontinence in Residential Care Facility (RCF) Residents
Implementation of a more person-centered approach in incontinence care in the intervention RCFs allowed a shift toward less drastic and fewer aids needed to manage incontinence among residents (p < 0.01), such as changing from an indwelling urinary catheter to incontinence pads and toilet assistance (Figure 3 and Figure 4).
Cross tabulation between type of urinary incontinence products, as well as other strategies during the study timeframe, in the implementation residential care facility (RCFs).
Cross tabulation between type of urinary incontinence products, as well as other strategies during the study timeframe, in the control residential care facility (RCF).
Finally, introduction of a person-centered approach had a positive effect on the number of UI assessments conducted in the intervention RCFs at baseline and Follow Up 1 (p < 0.05) (Figure 5).
Cross tabulation between the number of urinary incontinence assessments conducted in the implementation residential care facilities (RCFs) and control RCF before, during, and after implementing a person-centered approach.
Resident Demographic Covariates
The relationship among residents' characteristics (e.g., age, gender) and QUALID scale scores, type of RCF, and number of PCC actions for UI was not statistically significant. Male gender had a significant effect on the number of UI assessments performed (p < 0.01) and type of protection products used to manage the loss of control in the intervention RCFs (p < 0.05). The relationship between QUALID scale scores and residents' characteristics (e.g., age, gender), number of PCC interventions, type of protection used, number of UI assessments conducted, and MMSE scores was not statistically significant.
Results of the current study indicate that the strategy used for implementing PCC at RCFs for older adults with cognitive decline and UI is feasible and can be implemented with minimal cost and effort. In addition, the study shows that PCC can improve quality of life and quality of care for residents if supported by an engaged management that provides the necessary conditions for adapting a PCC approach in everyday practice. The implementation program was based on partnership, narrative, and documentation and intended to create a sustainable person-centered approach with particular focus on incontinence care. When conducting intervention studies with a select group of participants, the Hawthorne effect may occur in terms of some individuals performing better when participating in a study (Parsons, 1974). The term “Hawthorne effect” is often used to suggest that individuals may change their behavior due to the attention they are receiving from researchers rather than because of an implementation of independent variables. However, in the current study, only 20 participants from a total staff of 100 joined the intervention program. The process outcomes were measured among all residents who had agreed to participant in the study, which indicates an improvement effect beyond the Hawthorne effect.
One of the main findings of the current study was that the person-centered approach supported by management in the intervention RCFs showed a trend toward beneficial effects on residents' quality of life, as measured by the QUALID scale (Falk et al., 2007), a proxy measurement scale specifically developed for older adults with cognitive decline. This finding is in agreement with Sjögren, Lindkvist, Sandman, Zingmark, and Edvardsson (2017) who showed the necessity of organizational and environmental factors to improve PCC in RCFs. In addition, a significant effect was noted for improved quality of care, as measured by the number of caring actions performed compared to the control RCF. This finding is in line with results of previous studies implementing a person-centered approach in hospital health care, suggesting that a fully implemented PCC approach shortens hospital stay and maintains functional performance in hospitalized patients without increasing risk for readmission or jeopardizing patients' health-related quality of life (Alharbi, Carlström, Ekman, & Olsson, 2014; Ekman et al., 2012). The trend toward a gradual increase in the number of assessments and PCC actions for UI in the intervention RCFs during and after implementation of the person-centered approach confirms earlier findings that PCC is highly dependent on a shared philosophy of care with engaged leaders who support competence, collaboration, and time for staff to spend with residents (Sjögren et al., 2017). In the current study, it was compulsory for the leaders to be fully involved in all 10 months of the program to be invited to take part in the study, which therefore could have had an impact on the outcome.
Characteristics of RCFs are the frail health of residents, prevalence of cognitive impairment among residents, and overall structure of care delivery. Residents at RCFs in Sweden often have multiple, chronic, comorbid conditions in addition to mild cognitive impairment and dementia. Approximately 90% of older adults living in RCFs in Sweden have a progressive ongoing dementia diagnosis (Sjögren et al., 2017), which necessitates a high sensitivity to special needs and preferences in line with a PCC approach, due to these individuals' affected ability to communicate. Therefore, eliciting a resident's narrative and developing PCC goals require skill in dementia care and working partnerships with family and friends, rather than relying on the resident alone. Finally, RCF care is delivered as social and health care support in a 24-hour, long-term care environment, which means that most of the time, care is provided by unlicensed assistive personnel.
In the current study, all residents had partial or total incontinence similar to figures showing that 70% to 80% of older adults living in RCFs have UI (Sitoh et al., 2005). Effective incontinence care requires care by licensed and unlicensed staff, ranging from medication evaluation and reconciliation by licensed staff to toilet assistance by unlicensed direct care workers. It has been shown that RCFs with higher levels of PCC have a higher proportion of educated staff and a higher proportion of staff receiving regular supervision, compared to units with lower levels of PCC (Sjögren et al. 2017). These findings are in line with a study by Aiken et al. (2017) showing that a bedside care workforce with a greater proportion of professional nurses is associated with better outcomes for patients and nurses. It could therefore be assumed that a higher range of licensed staff, such as RNs at RCFs, would also have a positive impact on quality of incontinence care. A high care competence is especially crucial considering the well-known fact that residents affected by UI have an increased frequency of adverse events, such as falls, infections, polypharmacy, and pressure ulcers, as well as a variety of other health issues affecting their quality of life (Riemsma et al., 2017). Although quality of life can be negatively affected by other means, such as the course of dementia, it can be assumed that incontinence itself has a profound psychosocial impact, compared to individuals who are not affected by UI. As such, incontinence care is an appropriate clinical focus for a study of the effects of PCC, whereby residents' preferences and values are partnered with caregivers' knowledge of residents' routines and habits.
UI is independently and positively associated with poor self-rated health (Hägglund & Ahlström, 2007). Among older adults, UI is also often related to infection, other diseases, and frailty. Immobility, constipation, depression, and dementia can complicate the situation and worsen an individual's ability to counter incontinence symptoms (Stenzelius et al., 2006). The combination of UI and dementia causes distress for older adults and often necessitates institutional care (Sitoh et al., 2005). It is therefore important that older adults undergo a baseline investigation as a guide for a personalized incontinence care plan, as described in the current study. Overall, participants in the intervention RCFs systematically demonstrated a better quality of life, a finding that is in agreement with previous study results (Grabowski et al., 2014; Zimmerman et al., 2014).
The main limitation of the current study is the number of participants who dropped out during the course of the study due to multimorbidity and death, factors that are most common in frail, very old adults, but which have an impact on the rigor of the results. In addition, quality of life diminished during the implementation phase, indicating that a shift in routines, even with the ambition of supporting PCC and quality of care, can initially cause confusion and stress relating to roles and routines at the outset of a program's implementation.
Implementation of a person-centered approach had a significant and sustainable effect on quality of care, demonstrated as an increase in tailored person-centered actions toward incontinence based on a combination of residents' narratives and basic UI assessments. This approach resulted in a change from generalized to personalized solutions as a response to the varying needs of residents, followed by better quality of life.
The result has implications for theory, adding to the growing global research front on how to understand and transform a person-centered approach into health care. The study also has implications for practice, as UI impacts quality of life. The findings showed that by implementing a person-centered approach in clinical practice with a focus on incontinence care, quality of care and quality of life were supported for RCF residents. It was particularly important for the feasibility of implementing the program that management was committed and supported a PCC approach during the specific project time as well as in the long term. The implications for nursing practice therefore call for leaders supporting competence and time for staff to integrate a person-centered approach into everyday practice. In addition, the results emphasize the importance of measuring and high-lighting staff efforts and achievements of improving the quality of care and quality of life in RCFs for older adults.
Future studies are needed with larger samples over longer periods of time to confirm these results. In addition, future studies should focus on methodological issues, such as the use of a mixed-method design to understand the perceptions and experiences of residents and staff of implementing PCC as a complement to quantitative data. Variables that might influence the implementation of PCC should also be studied, such as the impact of individual skills, competence, and teamwork supported by the physical environment.
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Pairwise Comparison of Person-Centered Care Interventions for Urinary Incontinence in Residential Care Facility (RCF) Residents
|Study Group||N||Mean Difference||SE||p Valuea|
|Follow Up 1 RCF 1 and 2Baseline RCF 1 and 2||3433||0.59*||0.25||0.02|
|Follow Up 2 RCF 1 and 2Baseline RCF 1 and 2||2333||0.49||0.27||0.07|
|Follow Up 3 RCF 1 and 2Baseline RCF 1 and 2||2833||0.15||0.26||0.56|
|Follow Up 1 RCF 1 and 2Follow Up 3 RCF 1 and 2||3428||0.74*||0.26||0.01|
|Follow Up 2 RCF 1 and 2Follow Up 3 RCF 1 and 2||2328||0.64*||0.28||0.02|