Archives of Gerontology and Geriatrics 30 (2000) 173 – 184 www.elsevier.com/locate/archger Exploration of subjective well-being and dependence in daily activities at the beginning of the geriatric rehabilitation process: a challenge to traditional goal-setting and evaluation procedures? Carita Nygren a,*, Susanne Iwarsson a, Ove Dehlin b a Di6ision of Occupational Therapy, Department of Clinical Neuroscience, PO Box 157, S-221 00 Lund, Sweden b Department of Community Health Sciences, Lund Uni6ersity, Lund, Sweden Received 16 December 1999; received in revised form 8 February 2000; accepted 10 February 2000 Abstract The objectives of this study were to describe a population of elderly patients at the beginning of their rehabilitation period as regards subjective well-being and dependence in activities of daily living (ADL). In a Swedish rural county 244 patients aged 65 + who had begun rehabilitation within the last month were targeted. One part of the self-administered Goteborg Quality of Life Instrument and a revised version of the ADL Staircase were used. ¨ No correlation was found between subjective well-being and ADL dependence. However, significant correlations between ADL dependence and separate subjective well-being items were found in three out of 17, i.e. the items ‘energy’, ‘leisure’, and ‘sense of significance and appreciation outside home’. Overall subjective well-being did not show any gender differences, but significant gender differences due to the distribution of scores was shown; females scored the items ‘health’, ‘sleeping’, and ‘economy’ as bad to a larger extent than males. Males were significantly more dependent than females in three out of nine ADL: ‘going to the toilet’, ‘dressing’, and ‘cooking’. Additional knowledge of subjective well-being and ADL dependence at the beginning of the rehabilitation process challenges the traditional goal-setting and evaluation procedures of geriatric rehabilitation services. © 2000 Elsevier Science Ireland Ltd. All rights reserved. * Corresponding author. Tel.: +46-46-2221940; fax: + 46-46-2221959. 0167-4943/00/$ - see front matter © 2000 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 1 6 7 - 4 9 4 3 ( 0 0 ) 0 0 0 5 5 - 8 174 C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 Keywords: Activities of daily living (ADL); Quality of life; Geriatrics; Rehabilitation; Gender 1. Introduction Rehabilitation is an individualised treatment process aiming at reducing the effects of functional consequences of disease and injury and achieving greater independence and social reintegration (McGrath and Davies, 1992; Weber et al., 1995). In modelling rehabilitation processes the ICIDH (WHO, 1999) has been widely employed (Whiteneck, 1994; Weber et al., 1995; Hoenig et al., 1997). Traditionally the rehabilitation process has concentrated on the reduction of impairments, with a tendency to focus on body function, but during recent years there has been a shift towards a more activity and participation (WHO, 1999) oriented approach (Jette, 1995; Weber et al., 1995; Glass, 1998). In current geriatric rehabilitation practice the target is the patient’s ability to continue to live a normal life as long as possible. The ability to perform activities of daily living (ADL) is affected by chronic illnesses and the weakening of functions due to the normal ageing process (Faden and German, 1994; Moseley, 1994; Era and Rantanen, 1998; Laukkanen et al., 1998). Consequently, measures of actual performance in ADL do not only correspond to the activity and participation approach but are also gaining increasing importance in the development and evaluation of geriatric care (Kurlowicz, 1993; Glass, 1998). During the last few years there has been a growing consensus that Quality of Life is an important indicator of geriatric rehabilitation outcome (King, 1996). The concept of Quality of Life includes objective dimensions, e.g. diagnosis, housing, and economy, as well as subjective dimensions, e.g. the values and preferences the patients have in life (Gill and Feinstein, 1994) and subjective well-being (Tibblin et al., 1990). Subjective Quality of Life has been used in the evaluation of diagnosisspecific treatment (Wyller et al., 1997; Ronning and Guldvog, 1998), but our ¨ knowledge of how geriatric patients’ subjective Quality of Life changes through a rehabilitation process is still weak. As indicated by the ICIDH conceptual framework, there are multifaceted relationships between the different concepts, e.g. between activity and participation (WHO, 1999). Still, more research is needed in order to explore how the concept of Quality of Life is related to activity and participation, but one of the few studies available (Iwarsson and Isacsson, 1997a) reported significant correlations between ADL dependence and subjective well-being of old people in a Swedish sample. In addition, their results indicated gender differences, as did the results of Helset (1993), who stated that females tended to report lower subjective Quality of Life even though they carried out their daily activities to a larger extent than males. In current research, much attention is concentrated on the outcome of geriatric rehabilitation, while less interest has been invested in how ability to perform ADL and Quality of Life vary through the process. Even if baseline information usually is presented in outcome studies, to our knowledge no information on the relation- C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 175 ships between ADL and Quality of Life at the beginning of the rehabilitation process is available. Such knowledge is crucial for patient centered goal-setting and would be valuable for analyses over time, ultimately providing us with information useful for the planning and evaluation of more efficient rehabilitation programmes. The main objectives of this study were to describe a population of elderly patients at the beginning of their rehabilitation period as regards subjective Quality of Life, i.e. subjective well-being, and dependence in ADL, exploring interrelationships among the underlying variables. An additional objective was to investigate gender differences for the variables in focus. 2. Subjects and methods 2.1. Study district In 1992 a major reform concerning the organisation of geriatric health care took effect in Sweden. Its main purpose was to transfer the basic responsibilities for geriatric health care services including rehabilitation from the county councils to the municipalities. In the annual follow-up of the reform in 1994, the Swedish Board of Health and Welfare saw major obstacles in developing efficient and high-quality geriatric rehabilitation. In order to improve the quality of geriatric rehabilitation, the Swedish government in 1995 assigned special grants to local geriatric rehabilitation projects. This study was accomplished within the frame of the evaluation of the local geriatric rehabilitation projects in the southern Swedish County of Kristianstad (Iwarsson et al., 1999). The total population of the county was 180 000 inhabitants. It consisted of mainly rural areas with thirteen municipalities and four towns with one hospital in each. All four hospitals provided for specialised geriatric rehabilitation in their geriatric clinics, with both in- and outpatients. In addition, in all the 13 municipalities, local rehabilitation teams provided geriatric rehabilitation, either in day-care facilities or in their own homes. In the local teams occupational therapists and physiotherapists had the main responsibility for the rehabilitation process, with assistance from nursing staff. Medical consultation was available from local health care centres. 2.2. Sampling procedure Patients treated in any of the above forms of rehabilitation in the county were included, aiming at catching a genuine geriatric rehabilitation sample, representing the actual mixed caseload found through the chain of care (Nygren et al., submitted). The target population comprised of all patients aged 65 years or older who had been referred within the last month to any of the 50 local physiotherapists or occupational therapists who were strategically recruited as data collectors for this study. The patients were to have communicative skills in the Swedish language and cognitive function adequate enough to participate in study procedures, and to have no known alcohol or drug abuses (Nygren et al., submitted). The therapists 176 C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 were asked to recruit all the patients from their current records who at the time of the study met the inclusion criteria. In all 279 patients were identified and assessed within one month from admission to rehabilitation. Due to 35 incomplete assessments, the final sample consisted of N= 244. 2.3. Instruments For assessment of subjective well-being the self-administered Goteborg Quality of ¨ Life Instrument (Goteborg QoL) (Tibblin et al., 1990) was used. This instrument ¨ consists of two parts: one assessing subjective well-being, the other different symptoms. In this study only the well-being scale was used. The original version of the scale consisted of 15 items pertaining to social, physical, and mental well-being. In this study a later version including 18 items was used (Tibblin et al., 1990; Iwarsson and Isacsson, 1997a), but since all respondents in this study were retired from work, the item ‘work’ was excluded. The patients rated each item on a seven-step ordinal scale; from ‘very bad’ (= 1) to ‘excellent, couldn’t be better’ (= 7). The maximum total score of the 17 items used was 119, indicating excellent subjective well-being. According to Iwarsson and Isacsson (1997a), the internal consistency of the scale allows for the use of a summed score. In this study as well, the internal consistency of the summed subjective well-being scale of the Goteborg ¨ Quality of Life Instrument was evaluated with Cronbach alpha (Cronbach, 1951). For group comparison alpha coefficients of 0.50–0.70 are considered adequate, while for reliable individual comparisons a score of 0.90 is needed (Ware, 1984; Birren et al., 1991). In the current study, the internal consistency of the summed subjective well-being scale was 0.84. Dependence in daily activities was assessed with the ADL Staircase (Sonn and , Hulter-Asberg, 1991), revised version (Iwarsson and Isacsson, 1997b). The ADL Staircase is a further development of Katz’s ADL Index (Katz et al., 1963) for assessment of dependence/independence in personal daily activities (P-ADL) and instrumental daily activities (I-ADL). The instrument consists of five activities in P-ADL: feeding, transfer, going to the toilet, dressing, and bathing, combined with four I-ADL activities: cooking, transportation, shopping, and cleaning, in the hierarchical order enumerated. In congruence with previous research in rural areas (Iwarsson and Isacsson, 1997b; Iwarsson, 1998) two alternative items of transportation were eligible. If the patient previously had used public transportation the , original item was used (Sonn and Hulter-Asberg, 1991), but if they had used their own car, the item revised by Iwarsson and Isacsson (1997b) was used. The results were summarised into hierarchical ADL grades from 0 (independent in all activities) to 9 (dependent in all activities). Persons who could not be classified according to the cumulative scale, i.e. those who demonstrated a divergent pattern of , dependence, were classified as ‘others’ (Sonn and Hulter-Asberg, 1991). In order to maximise the discriminative power of the data and to be able to include respondents classified as ‘others’, ADL ranks were calculated (Iwarsson et al., 1998). In this study the largest proportion of dependence was demonstrated in transportation, followed by cleaning, shopping and cooking. Consequently, the ADL grades C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 177 were calculated in this hierarchical order (Iwarsson and Isacsson, 1997b). Internal reliability and validity of the ADL Staircase was evaluated by Guttman’s coefficient of reproducibility, COR. (Guttman, 1950) and Menzel’s scaling coefficient, COS. (Menzel, 1953). The lowest acceptable limits are 0.90 for COR and 0.60 for COS. In this study the COR=0.97 and the COS= 0.88. 2.4. Accomplishment The 50 local physiotherapists and occupational therapists served as data collectors in the respondent’s home or at the rehabilitation facilities during a period of eight weeks. The Goteborg QoL Instrument and the ADL Staircase revised version ¨ were administered in accordance with the instructions for each instrument. In addition, descriptive data were collected. As far as possible the data collectors interviewed patients not known to them. In order to optimise reliability and data quality, the authors arranged several data collector seminars, discussing problems and experiences from using the instruments. 2.5. Statistical methods Spearman’s Rank correlation between ADL dependence and summed subjective well-being was calculated on the 78% of the subjects who had answered all the questions in the subjective well-being scale (Tibblin et al., 1990). Rank correlations between the separate items of the subjective well-being scale and ADL dependence were calculated on the number of subjects who had answered each of the separate items. In order to investigate gender differences in subjective well-being, first the subjective well-being scores were trichotomised in the following way: ‘bad’ (=1–3), ‘neither good nor bad’ ( =4) and ‘good/excellent’ (= 5–7). Next, in order to control for age, gender differences were computed with the Mantel–Haensel test (Altman, 1994). Gender differences in ADL-dependence were computed with the chi-squared test. Results with P B0.05 were considered statistically significant. 3. Results 3.1. Description of the study sample Ninety-one per cent of the patients had their rehabilitation in day-care facilities or at home, while 9% were admitted to hospital. Of the patients treated in day-care facilities or at home, 44% lived in sheltered housing facilities while 55% lived in ordinary housing. The mean age of the total sample was 78 years, range 65–95 years. For females the mean age was 79 years, range 65–95 years, and for males the mean age was 77 years, range 65–92 years. The majority of the patients were females and lived alone (Table 1). 178 C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 3.2. Subjecti6e well-being and ADL dependence The subjects who had completed the subjective well-being scale (78%) rated their general well-being as rather high, Md= 86, total score range 43–116. An analysis of the separate items showed Md= 7 for the item ‘sense of significance and appreciation at home’. For none of the 17 items was the median score lower than four (Table 2). The result of the assessment of ADL dependence showed that 3% of the patients were independent in ADL, while 65% were dependent in both P-ADL and I-ADL. The remaining 32% were dependent only in I-ADL. 3.3. Correlations between subjecti6e well-being and ADL dependence No significant correlation was found between the summed subjective well-being scale and ADL dependence, nor was any significant correlation found when analysing females and males separately. However, significant correlations between ADL dependence and separate subjective well-being items were found in three out of 17, namely between ADL dependence and one item from the mental well-being scale, ‘energy’ (P =0.005), and between ADL dependence and two items from the social well-being scale, ‘leisure’ (P =0.040) and ‘sense of significance and appreciation outside home’ (P =0.023). No significant correlation was found between any of the items of the physical well-being scale and ADL dependence. 3.4. Gender differences Summed subjective well-being (Table 2) did not differ between females (Md= 85) and males (Md =87). However, further analyses revealed significant gender differences due to the distribution of scores; females scored the items ‘health’, ‘sleeping’, and ‘economy’ as bad to a larger extent than males (Table 3). Males were significantly more dependent than females in three out of nine ADL: ‘going to the toilet’, ‘dressing’, and ‘cooking’ (Table 4). Analyses of the separate subjective Table 1 Descriptive data of a Swedish sample of elderly patients, aged 65–95 years, at the beginning of their rehabilitation period (N= 244) Descriptive characteristics Total study sample (N= 244) % Females (n= 145) % Males (n = 97) % Ci6il status Single Married or cohabiting Widowed 15 42 43 15 26 59 15 66 19 Li6ing conditions Sheltered housing Ordinary housing 41 59 48 52 31 69 C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 179 Table 2 Median scores of the ratings of separate items of the subjective well-being scalea in a Swedish sample of elderly patients, aged 65–95 years, at the beginning of their rehabilitation period (N =244) Subjective well-being subscale Subjective well-being item Total sample Females Males N =244 n = 145 n =99 Md b Md b Md b Health Fitness Hearing Vision Memory Appetite 4 4 5 5 5 6 4 4 5 5 6 6 4 4 5 5 5 6 Mood Energy Endurance Self-esteem Sleeping 6 5 6 5 6 5 5 5 5 5 6 5 6 5 6 Family Economy Housing Leisure Sense of significance at home Sense of significance outside home 6 5 6 5 7 6 6 5 6 5 7 6 7 5 7 5 6 6 Physical well-being Mental well-being Social well-being a From the Goteborg Quality of Life Instrument (Tibblin et al., 1990). For this study a later version ¨ of the instrument, comprising three more items was used (Iwarsson and Isacsson, 1997a). b Results from subjective ratings on an ordinal scale ranging from 1 ( = ‘very bad’) to 7 ( =‘excellent’ couldn’t be better). well-being items and ADL dependence showed significant correlations for females in the item ‘energy’ (P =0.018) and for males in the items ‘fitness’ (P= 0.046) and ‘energy’ (P =0.041). 4. Discussion The results of this study showed that a group of geriatric patients at the beginning of their rehabilitation period rated their subjective well-being rather high, in spite of substantial dependence in ADL, and that there was no significant covariance between ADL dependence and summed subjective well-being. This result was unexpected, since previous studies indicated such relationships (Noro and Aro, 180 C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 1996), e.g. in a gerontological population sample of the same age from one of the municipalities of the same study district, using the same instruments (Iwarsson and Isacsson, 1997a,b). On the other hand, when the proportions of ADL dependence Table 3 Gender differences in distribution of ratings of separate items of the subjective well-being scalea in a Swedish sample of elderly patients, aged 65–95 years, at the beginning of their rehabilitation period (N =244), females (n =145) and males (n = 99) Subjective well-being item Gender Distribution of ratingsb P-value Excellent/good Neither good/bad Bad % % % Females Males 28 43 32 30 40 27 0.022 Females Males 56 75 23 13 21 12 0.013 Females Males 56 74 23 22 21 4 0.023 Health Sleeping Economy a From the Goteborg Quality of Life Instrument (Tibblin et al., 1990). For this study a later version ¨ of the instrument, comprising three more items was used (Iwarsson and Isacsson, 1997a). b Results from subjective ratings on an seven step ordinal scale, trichotomised as 1–3 ( =‘bad’), 4 ( =neither good or bad) and 5–7 (‘excellent/good’). Table 4 Gender differences in ratio of dependence in the separate activities of the ADL Staircasea in a Swedish sample of elderly patients, age 65–95 years, at the beginning of their rehabilitation period (N =244) ADL Gender differences P-value Total sample n= 145 n= 99 N =244 % Feeding Transfer Going to the toilet Dressing Bathing Cooking Shopping Cleaning Transportation Ratio of dependence Females Males % % 1 30 34 41 59 61 85 88 92 0 38 48 54 64 89 90 92 88 1 34 39 47 61 72 87 89 90 ns ns 0.032 0.043 ns B0.0005 ns ns ns a , (Sonn and Hulter-Asberg, 1991). For this study a revised version of the instrument, comprising an alternative item for transportation was used (Iwarsson and Isacsson, 1997b). C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 181 and the scores of summed subjective well-being in the current study and the previous ones were compared, this patient sample, as expected, showed considerably higher proportions of dependence in ADL, as well as lower subjective well-being. In this study no significant correlation between the single item ‘health’ from the physical well-being scale and dependence in ADL occurred, neither for the whole study sample nor for either of the gender groups. In contrast to this, gerontological studies have shown that performance and independence in ADL are positively related to health (Clark et al., 1998; Era and Rantanen, 1998), subjective well-being (Iwarsson and Isacsson, 1997a), and survival (Iwarsson et al., 1997). Most likely, health has a different meaning for elderly patients at the beginning of a rehabilitation process than for a gerontological population maintaining their everyday life. Even so, some significant correlations were found between separate subjective well-being items and ADL dependence. This shows the value of the assessment of subjective well-being and ADL dependence at the beginning of a rehabilitation process, since the results could be used for input to rehabilitation planning. The absence of significant correlations between items from the physical well-being scale and ADL dependence reflected the importance of considering other areas of well-being, e.g. mental and social factors (Hoenig et al., 1997). A focus on mental energy, leisure activities, and social activities at the beginning of a rehabilitation period could presumably make the process more efficient, setting goals in accordance with the patients’s needs. The covariance between ADL dependence and the item ‘energy’ from the mental well-being scale is probably because the patients had recently started their rehabilitation, and had to cope with a new situation, taking a lot of energy. Since dependence in ADL covaried with ‘leisure’ and ‘sense of significance and appreciation outside home’ as well, there seems to be a risk of loss of meaningful activities and relations to significant others. A loss of social roles most often causes a weaker and narrowed social network (Kurlowicz, 1993; Clark et al., 1998). As regards the significant correlation between ‘leisure’ and ADL dependence, it does not have to be related to mental and social well-being only. In a population study of old people (Iwarsson and Isacsson, 1997a), using the same instruments, a significant correlation between the accessibility of the housing environment and ‘leisure’ indicated a need for further investigation into how the physical environment (Lawton, 1983, 1991) affects subjective well-being. The only significant correlation between ADL dependence and a single physical well-being item, viz. ‘fitness’, occurred in the male sub-sample, indicating that the general assumption about the covariation between fitness and ADL dependence (Birren et al., 1991; Grimby and Wijklund, 1994) could be related to gender (Iwarsson and Isacsson, 1997a). In addition, the conclusion that elderly females, in spite of their higher morbidity, maintain and perform ADL to a larger extent than males (Helset, 1993; Sarwari et al., 1998) was reflected in this study. However, since the items of ADL instruments are not neutral for gender (Iwarsson et al., 1997; Iwarsson, 1998), further exploration in order to control for methodological bias is called for. 182 C. Nygren et al. / Arch. Gerontol. Geriatr. 30 (2000) 173–184 An obvious limitation of this study is the fact that exact data on diagnoses according to the ICD IX were not gathered, due to the fact that this kind of information was not always available to the local rehabilitation teams. Instead, symptom diagnoses were used, such as rehabilitation after stroke, after hip fracture or ‘general mobilization’. Diagnosis influences the rehabilitation process and is an important factor to consider in any treatment planning. Still, the same diagnoses can include differing functional abilities. Furthermore, the majority of studies in the field of rehabilitation focus diagnose specific samples. The sample of this study represents a genuine, not idealised geriatric rehabilitation sample, including different diagnoses and different levels of care (Nygren et al., submitted). Even though as many as 50 practising occupational therapists and physiotherapists were used as data collectors, the data produced on ADL dependence reached the measurement standards required. Collecting data of high quality in clinical reality requires certain efforts (Iwarsson, 1998; Nygren et al., submitted), and the methodological seminars given by the authors probably counteracted the source of errors that the use of many data collectors usually implies. The high values of COR (Guttman, 1950), and COS (Menzel, 1953) demonstrated in the current study indicate that we succeeded in gathering data with quite sufficient reliability and validity. One possible explanation for the non-existing but expected covariance between ADL dependence and summed subjective well-being might be given by the distribution of data. The majority of the subjective well-being items measured showed similar and rather high medians. Responses to this kind of scales tend to cluster against the mean rating alternative, but on the other hand the data distributions were similar in previous studies (Iwarsson and Isacsson, 1997a). A fact supporting this explanation anyhow is that the few items that showed covariance between subjective well-being and ADL dependence demonstrated wider data distributions with a higher proportion of ratings below the median value in comparison with the remaining items. Furthermore, it could be argued that the varying number of dropouts, due to incomplete answers to the subjective well-being scale, contributed to the non-existing covariance. The questionnaire was self-administered, and most likely some of the elderly respondents in this study had difficulties even though they were guided by a therapist, highlighting the specific difficulties of data collection with frail individuals. Still, previous studies from the same study district, based on a sample half the size of that in the current study, showed covariance between summed subjective well-being and ADL dependence (Iwarsson and Isacsson, 1997a), indicating that population size is a minor explanation for the unexpected result of this study. In conclusion, the results on ADL dependence and subjective well-being at the beginning of the rehabilitation process presented show the importance of gaining additional knowledge for the planning and development of geriatric rehabilitation services. Based on the findings of this study, the targeting of patient needs requires re-evaluation, challenging the traditional goal-setting and evaluation procedures of current geriatric rehabilitation services. C. Nygren et al. / Arch. Gerontol. 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