Causes of Dependence in Personal Care Three Years after Stroke A Study in the Home Environment Many activitiRs of daily living (ADL) assessment instruments are available for judging the ability to perform personal care in, among others, persons suffering a stroke. However, ADL assessment instruments do not normally treat the underlying causes offailure to perform an activity. Seventeen persons with stroke were videotaped when performing personal care in their home environments about three years after the incident. The underlying causes of their failure in personal care are described in intrapersonal, interpersonal, and environmental dimensions. Interpersonal obstacles proved to be the main reasons why the persons in this study did not perform personal care. The self-reports of a 24-hour activity pattern showing the relationship between use of time for performance of personal care, sleep and rest, and other activitiRs are presented. For the participants in this study, the Klein-Bell ADL Scale, an assessment instrument comprising 170 observation points, was judged to be valid and reliable, but some modifications are proposed.
This study was supported by grants from the Karolinska Institute and from Konung Gustavs och Drottning Viktorias Stiftelse. Our grateful thanks are due to our colleague Margareta Lilja for her assistance with data collection and to Assistant Professor Bengt Ramund for his statistical advice.
Ingrid Soderback, DrMSc, OT Department of Rehabilitation Medicine Karolinska Institute/Hospital; and Department of Social Care and Rehabilitation Stockholm College of Health and Caring Sciences Stockholm, Sweden
Gorel Caneman, OT Jan Ekholm, MD, PhD Department of Rehabilitation Medicine Karolinska Institute/Hospital Stockholm, Sweden Most persons suffering from stroke show impairments l that require dependence on a helper in performing activities of daily living (ADL). 2 In these cases, the aim of occupational therapy is, through participation in ADL training, the use of technical aids, and adaptation of the environment, to help these persons to be as independent as possible. 3 Within this process, indices are used for assessing performance ability and degree of dependence in ADL and for evaluating the effects of intervention. 4 Within medical care and nursing, ADL assessment scales are used for describing the degree of nursing care required 5- 7 and for evaluating different forms of care. 8-11 Some of these ADL scales contain items that assess self~maintenance (dressing, elimination, mobility, bathinglhygiene, eating, and emergency telephone communication), while others include items that assess instrumental activities of daily living (I_ADL)I2-15 (shopping, cleaning, using public communication, washing, and preparing food). For optimal usefulness, ADL scales need to be valid and have acceptable reliability 4,I6-18 in relation to the person being assessed (age, diagnoses, disability, culture). Here three different areas for NeuroRehabil 1993; 3(2):60-71 Copyright © 1993 by Andover Medical.
Causes of Dependence after Stroke
the use of ADL scales are identified. There are "global" ADL scales, which are scales intended for use with several different diagnosis groups according to their manuals. 19-24 Of the global scales, the Katz Index of ADL 19 and the Barthel Index 21 are usually employed for Swedish patients. These scales are used mainly for describing and predicting the dependence level in groups. The Katz Index of ADL is used for measuring function and objective prediction of necessary levels of care. The index includes six variables and six items (bathing, dressing, going to the toilet, transferring, continence, and feeding). In each of the six activities, the patients are classified as independent, partly dependent, or dependent. The Barthel Index is a simple-to-use functional evaluation of independence, useful in scoring improvement in the rehabilitation. Ten variables (feeding, moving from a wheelchair to bed and return, personal toilet, getting on and off toilet, bathing self, walking on level surface, ascending and descending stairs, dressing, controlling bowels, and controlling bladder) are measured. The patient's performance is scored 0 to 100, where 100 is independent. Another global ADL scale, the Klein-Bell Activities of Daily Living scale (K&B ADL Scale}20 is, according to the manual, useful as a basis for clinical decision making in occupational therapy and for evaluating an individual's ADL training. The K&B ADL scale contains six variables-dressing, elimination, mobility, bathing/hygiene, eating, and emergency telephone communications-with a total of 170 items. The patient's ADL performance is valued as 0 (no performance) or 1,2, or 3 (weighted points). The patient's performance is shown by a graph presented as a percentage of ADL independence. The scale is possible to use both in a hospital as well as in the patient's home environment. It is possible to run the K&B ADL scale assessment by observation during the patient's performance of the ADL tasks, in an interview, or with a combination of both. Apart from global ADL scales, there are diagnosisrelated ADL scales that concern impairment- and disability-specific items and describe, predict, and evaluate treatment in a specified diagnosis group of patients. There are many such diagnosis-related ADL scales for stroke victims. 15,25-29
61
There are also ADL scales originating from occupational therapy. They are aimed at assessing combinations of impairment and disability and for planning remediation treatment often in a specific diagnosis group such as stroke. Here areas of intellectual function and self-performance of personal care are represented,30,31 as is housework,32 but areas of interpersonal cooperation between the disabled person and his or her caregiver are not represented. ADL scales characteristically use an ordinal scale l9 ,21 indicated by such expressions as "can," "can with help," and "dependent,"23,25,3o or "performs" and "does not perform" the activity. 12 Do the results from these scales sufficiently express the causes of a person's dependence in personal care, and do they provide sufficient basis for planning remediation programs for the home care environment? In occupational therapy there is a need for ADL scales that assess the person's level of ADL performance as well as the causes of his or her dependence in self-care.
Aims
The aims of this study, which was approved by the Ethical Committee ofthe Karolinska Institute, were • to describe the causes of stroke victims' inability to perform personal care activities in their home environment~ about four years after the incident • to check the item content and the homogeneity of the categories and variables of the K&B ADL scale 20 for stroke victims and Swedish culture • to describe, fi)r stroke victims, the relationship between the time used for personal care and other activities, and for sleep and rest. 33
METHOD Subjects
The participants in this study (n = 34) were selected by lot from the first three randomly assigned quartiles (n = 68) organized by the number of items for which the participants of a greater population of traumatically brain damaged individuals and stroke victims (n = 195}1 had reported dependence in self-maintenance (n =
62
NEUROREHABILITATION / SPRING 1993
90, 46%). From the allotted 34 persons, 17 took part in the present study (6 women and 11 men ranging in age from 35 to 75 years, mean age 61 years), stroke victims about four years previously and living in their own homes (5 in service apartments). Of the 17 dropouts, 3 were independent in personal care by the time of the study and not suitable for the aim of the study, 1 was living at a nursing home, 1 was unable to communicate, 2 withdrew during the data collection because they did not want to be filmed, 6 declined to participate, and 4 could not be found at the addresses given.
The participants were contacted by letter and then by telephone. Their present age, diagnoses, main impairment (as stated by the medical record three years earlier), self-estimated time they spent performing personal care during the 24 hours (according to the time-log, see below), and proportion of personal care ability/disability (according to the K&B ADL scale, see below) are presented in Table 1. All were dependent on another person ("helper") (wife, n = 7; husband, n = 3; mother, n = 1; home help service or service apartment staff, n = 6).
Table 1. The participating stroke victims' diagnoses, main impairment, estimated hours used for personal care activities during 24 hours (53) and personal care maintenance ability/inability (26). Estimated Hours Used
during
24 Hours for
Age
35 59 55 54
Diagnosis Hemorrhage cerebri Infurctus cerebri Infurctus cerebri Thrombosis cerebri
Impairment
Self-Care Activities
Personal
Personal
Care
Care
Ability
(% scores
ofK&:B ADL scale)
Inability
(% scores
ofK&:B ADL scale)
Percentage ofItemsof K&:BADL Scale that Are Clearly, Permanendy, Not Applicable
6
Percentage of Items of K&:BADL Scale tbatAre Not Assessed
27 68 88
0 63 26 4
76 78
15 12
10
0 0 15
0 0 0 0
53 Hemorrhage cerebri 52 A carotic internal dx.,
Slight hemiparesis sin., tremor Hemiparesis sin., cortical blindness Hemiparesis sin., spatial dysgnosia Slight hemiparesis dx., dyspraxia, dysphasia Hemiparesis dx., spasticity Hemiparesis sin.
50 Hemorrhage sub-
Hemiparesis dx., dysphasia
2
31
50
4
53
Hemiparesis dx.
3
86
6
7
92
2
6
0
70 93 29 28
16 2 66 51
14
5 5 9
0 0 0 13
52
23
25
0
occlusion
51 73 66 74 73 69 74 73 67
arachnoidalis Hemorrhage subarachnoidalis Hemorrhage subarachnoidalis Infurctus cerebri Stroke Cerebr.!l insult Intracerebralis hematoma Cerebral insult and hemorrhage subduralis Hemiplegia cerebralis sin. Infurctus cerebri Infurctus cerebri
94
3 9 4
Hemiparesis dx., dysphasia Hemiparesis dx., dysphasia Slight hemiparesis dx. Hemiparesis dx. Hemiparesis sin.
4 5 3
10
6 8 9
Hemiparesis dx., dysphasia Hemiparesis sin.
2
55
27
18
0
Slight hemiparesis sin. Hemiparesis sin., spatial dysgnosia
4 2
86 60
9 22
5
18
0 0
sin. = sinister, dx. = dexter
Causes of Dependence after Stroke
Design The participants (and their spouses) were visited by occupational therapists (GC, ML, IS) at home two times in about one month. At the first visit a participation agreement was presented and an interview (GC or ML) took place. 34 During a conversation, the participants were asked to fill in their main activity for each hour during a 24-hour period in a self-administered activity log according to the instructions in the log.33 They mailed the activity logs back to the occupational therapists within a week. (The logs were completed and returned by 14 participants.) The activities the persons had noted were computerized, using the d-base program, and sorted by hour into the categories Self-Maintenance, Other Activity, and Sleep/Rest Activities. At the second visit, the participants were asked to choose among ADL included in the first Swedish translation of the K&B ADL scale. 20 The persons performed the self-elected personal care ADL with assistance from the helpers in the usual way. The occupational therapist (GC) observed, but did not participate. The person's performance of ADL not observed, but included on the K&B ADL scale, was estimated by the occupational therapist based on the person's or spouse's answers to questions. The observations and the answers were recorded according to the manual of the K&B ADL scale using the data sheet. The analyses show the percentage scores of the person's ability, of the person's inability, of the items not applicable, and of the items impossible to assess (see Tables 1 and 8). The number (3 to 16, mean 10) of ADL selected and performed depended on the person's own choice, the degree of impairment! disability, the person's speed when performing the ADL, and the time available for observation. The homogeneity of the categories and variables of the K&B ADL scale was estimated using Cronbach's coefficient alpha. 35 The self-selected ADL (second visit) were videotaped (IS) (13 to 45 minutes, mean 27 minutes, which was comparable to a nonparticipatory observation) simultaneously with the observations performed using the K&B ADL scale. The videotaped ADL (3 to 16, mean 10) were analyzed qualitatively (GC and IS at the same time) to find
63
the causes of the person's inability to perform personal care activities. The videos were viewed several times, and the critical incidents 36 (i.e., activities) selected and their positions in the videos noted. Critical incidents defined in this study are all the activities that the persons said or demonstrated were performed unacceptably to themselves, or that they were unable to perform, or all activities that spouses and home helpers said or demonstrated that they considered were not performed or were not acceptably performed. The films were viewed again and stopped at the critical incidents where one or more causes of the inability to perform the personal care activities were noted, or the dialogue tape recorded, until no more information could be gained. The data collected were checked for interobserver reliability (GC and IS) and compared for validity control with the person's percentage of the inability scores of the K&B ADL scale (Table 1). This data-documented material was computerized using the d-base program, listed, and sorted into descriptions. These descriptions were categorized in codes common to occupational therapy terms: descriptive codes of causes, substantive codes of causes, and theoretical codes ofcauses. An example of descriptive codes of causes is a person who does not check or correct an ADL performed. A consequence could be diminished performance of further tasks. These descriptive codes were coded into five substantive codes for cause. Here the causes of why the person did not check or correct a performed ADL could be, for example, impaired intellectual function. Among the substantive code causes, three theoretical codes for causes were identified. These theoretical codes for causes of why persons did not perform ADL were intrapersonal (i.e., depending on the person's ability), interpersonal (i.e., depending on the communication and cooperation process with the helper), and environmental (i.e., depending on factors in the person's own home or its surroundings). Mter coding the data-documented material, the relevance and validity of each category were further checked by the number of activities and the number of persons exhibiting the category (Tables 2 through 6). The videotapes were also analyzed action by action to check the content validity ofthe items of
64
NEUROREHABILITATION / SPRING 1993
the K&B ADL scale for Swedish stroke victims. Each action the person performed dependently was recorded, grouped, and compared with the items of the K&B ADL scale.
RESULTS The Time Used for Personal Care Activities, Other Activities, and Sleep and Rest Analyses of the activity log show the person's activities every hour over a 24-hour period (Fig. 1). The time spent on personal care activities was for half of the participants less than 2 hours and for the other half less than 4 hours (mean = within 3 hours 14 minutes) (see Table 1). The personal care activities (see Fig. 1) were performed mainly between 7 A.M. and 11 A.M. and between 10 P.M. and midnight. Half of the persons had 1 or 2 hours of rest in the afternoon between 1 P.M. and 6 P.M. The persons got up between 6 A.M. and 11 A.M. and went to bed between 8 P.M and midnight. The most active times were around 11 A.M., 1 P.M., 5 P.M., and 7 P.M. The person's ability to perform ADL according to the results of the K&B ADL scale varied between 27% to 94% (see Table 1.)
14 13
12 11 ( 10
•
i1 4
O'clodl
Figure 1. The activity log showing the person's activities every hour over a 24-hour period (n = 14).
Causes of Inability to Perform Personal Care Activities The analyses of the videotaped material where participants perform personal care activities revealed CdUses of inability that were categorized as follows:
• Intrapersonal causes (theoretical codes) where necessary activities were not performed because the person could not (substantive codes) do so (see Table 2) • Interpersonal causes (theoretical codes) where the causes of nonperformance were that the person handed over (substantive codes) the activities to the helpers (see Table 3) or where the helpers took over (substantive codes) performance of the activities (see Table 4), or that the person partly performed the personal care activities during negative interference (substantive codes) from the helpers (see Table 5) • Environmental causes (theoretical codes), objects or clothes that were not adapted or were wrongly adapted (substantive codes) (see Table 6).
The Content Validity and the Homogeneity of the K&B ADL Scale The K&B ADL scale is well suited for reliably and validly assessing personal care activities in stroke patients in Sweden. This statement is based on analysis of the content validity (comparing the action-by-action check of the videotapes and the 170 items of the K&B ADL scale). The video analyses and the items on the K&B ADL scale corresponded well. However, seven items should be added to the K&B ADL scale and the contents of four items changed (Table 7). These items were observed in the videotapes where the participants were unable to perform the activities. Some variables (putting on a bra, using extra devices, demonstrating voiding control, managing menstrual needs, wiping oneself, and eating semisolid food) were not chosen by the participants and others or were not observed for ethical reasons (Table 8). The items of some of the variables (Table 8) did not measure a common behavior (IV:G brushing teeth, IV:I shaving, IV:J nose blowing, V:A eating solid food, and V:C eating liquid food). For the other variables, the homogeneity (Table 8) ranged from a = 0.58 to a = 1.0.
Causes of Dependence after Stroke
65
Table 2. Intrapersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed cannot perform personal care activities because of some of the listed impairments. Effects: The persons mighi have help to perform the activities. Substantive Codes: Causes of Impaired Performance
Descriptive Codes: Causes of Impaired Performance
Impaired motor function
Inability to move
Impaired sensory function
Cannot perceive touch
Impaired intellectual function
Impaired emotional function
Feel pain Inability to perform actions simultaneously Inability to interpret space No control or correction of an activity Unconscious of ability Fear Impatience
Activities Not Performed Dressing, elimination, mobility, bathinglhygiene, eating Dressing, bathinglhygiene Dressing, mobility Dressing, elimination, bathinglhygiene Dressing, bathing/hygiene Dressing, mobility Dressing, mobility Dressing, mobility, bathing/hygiene Dressing, mobility
Number of Activities
Number of Persons
41
10
4
3
2
2 5
6
7 3
3
6
2
1 3
3
3
Table 3. Interpersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed do not perform personal care activities because they harul over the activities to the helpers. Effects: The persons don't perform activities and wait for help. Substantive Codes: Causes of Not Performed Activities Do not wish to perform the activities No attempt to perform the activities
Demand and expect that the helper will perform the activities
Descriptive Codes: Causes of Not Performed Activities Despite function It is the helper's paid work Have never tried Have tried, but lack self-reliance Have forgotten learned techniques Wishes, the patients think it is the best Need of social contacts
Passive acceptance of help
Docile
Activities Not Performed
Number of Activities
Number of Persons
Dressing, mobility, bathinglhygiene Dressing Dressing, bathing/hygiene
7
6
2 2
2
Dressing, bathing/hygiene
2
2
Dressing
2
2
Dressing, elimination, mobility, bathing/hygiene
7
4
Dressing, eating, bathing/hygiene Dressing, elimination, mobility, bathing/hygiene
6
6
7
4
I
66
NEUROREHABILITATION / SPRING 1993
Table 4. Interpersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed do not fulfil the performance of personal care activities because their helpers take over the activities. Effects: The persons don't perform activities and wait for help. Substantive Codes: Causes of Not Performed Activities
Descriptive Codes: Causes of Not Performed Activities
Reality
Otherwise the activity would not be performed
Overprotection
No increase in ability despite performance of these self-activities Avoid discomfort and disability confrontation Love
Disallow performed activities
No permission
No time tolerance
Helper anticipates the person's need for help Corrections from the "good mother" The helper's demand for quality in the activities The person's performance is underestimated and restrained It is the helper's wish and need to perform the activities The activities take too long to perform Hurry up the performance Not enough patience to wait until the person has finished
DISCUSSION Analysis of the videotapes revealed several new aspects of interpersonal activities that the authors had not previously considered. To be able to organize the causes, three theoretical codes for causes were created, five substantive codes for causes, and about 40 descriptive codes for causes of the data for things that hampered the stroke victim's personal care ability in the home environment (see Tables 2 through 6).
Activities Not Performed
Dressing, elimination, mobility, bathinglhygiene, eating, communication Dressing, elimination, bathinglhygiene Dressing, elimination, mobility, bathing/hygiene, eating, communication Dressing, mobility, bathing/hygiene Dressing, bathinglhygiene
Number of Activities
Number of Persons
6 3
7
5
9
12
2
3
Dressing, eating
3
Dressing, elimination, mobility, bathing/hygiene, eating Dressing, elimination, mobility, bathinglhygiene, communication Dressing, bathing/hygiene, eating
9
11
10
7
14
5
6
3
Dressing Dressing, mobility, bathinglhygiene Eating
The method used to reveal these causes of the person's inability to perform the self-estimated ADL may be questioned as the method is not well known and practiced. The two occupational therapists who performed the data analyses agreed on the interpretation of the causes, but may have been influenced by their work and life experience. This may also be an advantage as they both have long experience in stroke rehabilitation. The material had reached saturation point because all the descriptive codes for causes had been discovered repeatedly before all the data
Causes of Dependence after Stroke
67
Table 5. Interpersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed do not perform personal care activities during negative interference from the helpers.
Effects: The persons give up and show, for example, irritability, aggressiveness, and listlessness. Substantive Codes: Causes of Not Performed Activities
Descriptive Codes: Causes of Not Performed Activities
The helpers use the wrong technique
Unnecessary effort
The helpers use the same routine each time The helper is not present The helper has a wish to dominate
The person has various needs
The helper treats the person as an object when performing the person's activities Conflicts of opinion between helper and person
The person has acute needs Command the person performing activities Talk about the person in the third person or as "myself' Answer questions instead of the person It seems as if the person does not have human needs
Number of Activities
Number of Persons
Dressing, elimination, mobility, bathing/hygiene, communication Dressing, elimination, moving, bathinglhygiene, eating Elimination
2
2
Dressing, bathinglhygiene
2
2
Dressing, eating
2
3
Activities Not Performed
10
3
2 Elimination, bathing/ hygiene
2
2
The person is dissatisfied
Dressing, mobility, and eating
2
2
The helper is dissatisfied
Dressing, mobility, and eating
4
2
Table 6. Environmental causes of stroke victims' inability to perform personal care activities. Definition: The persons observed do not perform personal care activities because of lack of, or wrong adaptation of their
environment and clothes. Substantive Codes Causes of Not Performed Activity
No adaptation or wrong adaptation of environment No adaptation or wrong adaptation of clothes
Descriptive Codes Causes of Not Performed Activity
Furniture arrangement and choice of floor material Clothes difficult to put on or take off, or restrain movement Not normal wear
Number of Activities
Nuinber of Persons
Dressing, bathing/hygiene, eating. communication
18
8
Dressing, mobility
16
12
Activities Not Performed
Dressing
3
68
NEUROREHABILITATION I SPRING 1993
Table 7.
Item content of Klein-Bell Activities of Daily Living Scale.
1. Items that should be added to existing categories and variables of K&B ADL scale with relevance to stroke victims and Swedish culture
Categories I.
Dressing
III. Mobility
Variables Shoes Button sweaterlcoatl jacket Extra devices Bed mobility Ambulation
IV. Bathing/Hygiene V. Eating
Dry body Eat solid food
Item
Number of Persons Who Performed Activities
Remove shoes Remove sleeve with cuff or cuff-link Put on watch/jewelry Raise behind while lying down Pick up object from floor Apply face cream Handle cigarette safely
4 10 1
3
4 3
2. Items of K&B ADL scale suggested for change to suit stroke victims and Swedish culture Categories
Variables
Item
Changed to
Bed mobility
92. Go from supine to at least 70° sitting for one minute
Ambulation
94. Maintain ambulation position for 10 seconds
IV. Bathing/Hygiene
Clip nails
148. Trim all nails of both hands and feet
V.
Telephone
167. Dial (standard) number
Divide into two items: 1. Go from supine to at least 70° sitting in bed for 1 minute 2. Go from supine to sitting on edge of bed with feet over side for 1 minute Divide into two items: 1. Maintain ambulation position standing 2. Maintain position sitting in a wheelchair Divide into two items, one for hands and one for feet Dial an important number and communicate reason for call
III. Mobility
Emergency Telephone Communication
Source: Klein RM, Bell B. Self-care skills: behavioral measurement with Klein-Bell ADL scale, Arch Phys Med Relw,bil 1982; 63:335-338.
had been analyzed. On the other hand, it is probable that other causes, particularly substantive and descriptive codes, are to be found in other situations. It would have been possible to organize the videotapes in this study in different ways. The one chosen here was an attempt to provide a com-
bined overview of all the multifaceted causes, in different categories for the study population, which combine to render a person dependent on others for his or her daily life. However, further scientific work is necessary to construct a theory to explain the relationships among the descriptive, substantive, and theoretical codes for causes. For
Causes of Dependence after Stroke
Table 8.
Reliability of Klein-Bell Activities of Daily Living Scale. 20
Categories I.
II.
Dressing
Elimination
II I. Mobility
IV.
Bathing/H ygiene
Variables A B C D E F G H I
J
A B C D E F G H I
J
A B C D E A B C D E F G H I
J V.
69
Eating
VI. Emergency Telephone Communications
K L A B C D A
Obtain clothing from bureau Obtain clothing from closet Socks Shoes Shorts/Pants Pullover shirt Button shirt/sweater/jacket!coat Bra Hat Extra devices Voiding control Urination Wiping Manage menstrual needs Re-do clothing Bowel control Defecation Wiping Re-do clothing Flushing Bed Mobility Ambulation Get into car Get out of car Mobility through doors Achieve bathing position Accomplish set-up Adjust water Apply water to body Lather body Dry body Brush teeth Comb hair Shave Blow nose Clip nails Take medicine Eat solid food Eat semisolid food Eat liquid f()()d Drink Telephone
CI.
0.97 1.0 0.97 0.94 0.92 0.97 0.96 1.0
0.63 0.95 0.96 1.0 0.83 0.87 0 0.87 0.91 0.92 0.96 0.97 0 0 0.83 0 0.86 0.80 -0.002 0.58 0.29 -8.3 0 0 -2.23 -1.4 0.06 0.83
Number of Items 5 2 9 6 6 7 12 5 2 11 2 2 3 3 3 2 2 2 3 4 10 5 6 5 1 1 2 I 4 3 5 4 5 3 1 I
7 2 2 4 6
Number of Observations of Self-Elected Personal Care Activities 16 17 17 17 15 16 16 0 12 0 0 16 16 0 15 16 16 0 16 17 17 17 17 17 17 17 17 17 17 17 17 17 17 17 17 3 4 17 0 17 17 17
70
NEUROREHABILITATION / SPRING 1993
clinical use, it is recommended that the number of descriptive codes should be reduced to make interpretation and clinical decision making practicable. Some studies describe or report on a single cause and each of these tallies with one of the causes revealed in this study. It is well known that stroke victims have long-term sensorimotor, intellectual, and emotional impairments34 that make them unable to perform daily activities. It was surprising to discover the great importance of interpersonal causes in a persons' ability to perform daily activities. The fact that human activity is described in occupational therapy as originating from will, 3 which stimulates as well as hinders actions, supports here the cause "handing-over," "does not wish to," "no attempt," "demands and expects that the helper will perform the activities," and "passive acceptance." In the "taken over activity" cause, the helper's role is included where the activity is preferred for motives of "reality," "overprotection" or "disallowed performed activity," "no permission," and "time tolerance." Helpers here assume different rolese.g., professional nurse, spouse, or mother (without actually being any of these)-and most act from love; a few feel compelled to help. On the other hand, the stroke victim's role 11 depends on his or her subjective experience of being healthy or sick, and the stroke victim's condition is decisive fi)r the particular activity level. Schmidt et al. 37 have shown that stroke victims living with another person are less able to perform daily activities than those living alone, which could be interpreted as an explanation of the cause "take over" of activities. Another study38 reports that the patients complain of getting unsolicited help and advice, which could be interpreted as "negative interference." We have not found reports of inappropriate environments documented in occupational therapy literature on stroke victims. Even though the available literature partly supports the results ofthis study, these are valid only for the population concerned, and the study should be repeated with stroke patients at the acute stage. The number of participants in this study was very small for checking the content validity and the homogeneity of the K&B ADL scale. However, it can be concluded that the K&B ADL scale is useful
for clinical decision making and evaluation of occupational therapy intervention. This is shown by the high a-coefficients (Table 8) for most of the variables, the levels being comparable with criteria fi)r test scores. The variables that were not comparable with test scores (a >- 0.90) need to be checked in future studies. The items of the variables (Table 8) that did not assess a common behavior should normally be discarded, but not in this case, as too few persons were assessed. Other assessment instruments covering undressing are available, 19.21,25 but undressing is not a variable in the K&B ADL scale. For stroke victims, performance of some undressing items are relevant to the scale (Table 6). A conclusion from this study is that the participants' performance level in personal care 20 Cfable 1) did not correspond to the time used 33 (Fig. 1). The persons who spent up to 2 hours were rated on the K&B ADL scale as performing 31% to 94% and those who spent up to 4 hours were rated as performing 27% to 93%. One person used up to 9 hours of a 24-hour period for personal care activities, despite a relatively high score (68%) on the K&B ADL scale. This result does not tally with earlier assumptions in occupational therapy that the individual can perform personal care only if he or she has plenty of time. The results of this study will, it is hoped, help occupational therapists with stroke patients to identity earlier more and new causes of dependence in personal care in the home environment. Such identification could lead to obstacles to or hampering of interpersonal relations being reduced or overcome through adequate measures and ADL training programs for stroke victims and their helpers, and adaptation of the environment.
REFERENCES J, Caneman G. Impairment/function and disability/activity. Three years after cerebrovascular incident or brain trauma. Int Dis Studies 1991; 13:67-73. 2. Bernspang B. Consequences of stroke. Aspect5 of impairments, disabilities and life satisfaction: with special emphasis on perception and occupational therapy. Umea University Medical Dissertation NS 202; 1-58. 1. SOderback I, Ekholm
Causes of Dependence after Stroke
3. Kielhofuer G.A rrwdel of human occupation: theory and applicoiion. Baltimore: Williams and Wilkins, 1985. 4. Law M. Measurement in occupational therapy: scientific criteria for evaluation. Can] ace Ther, 1987; 54:133-138. 5. Brorsson B, Hulter-Asberg K. Katz Index ofIndependence in ADL. Reliability and validity in shortterm car;,e. Scand] Rehab Med 1984; 16:125-132. 6. Hulter-Asberg K. Elderly patients in acute medical wards and home care. Stockholm: Uppsala University, Almquist och Wiksell International, 1986. 7. Tornquist K, Lovgren M, Soderfeldt B. Sensitivity, specificity, and predictive value in Katz's and Barthel's ADL indices applied on patients in long term nursing care. Scand] Caring Sci 1990; 4:99-106. 8. Edmans JA, Towle D. Comparison of stroke unit and non-stroke unit: inpatients' independence in ADL. Br] ace Therl990; 53:415-418. 9. Hamrin EKF, Lindmark B. The effect of systematic care planning after acute stroke in general hospital medical wards. ] Advanced Nurs 1990; 15:1146-1153. 10. Law M, Letts L. A critical review of scales of activities of daily living. Am ] ace Ther 1989; 43:522-527. 11. Smith DS. Outcome studies in stroke rehabilitation., Stroke 1990; 21 (Supp!. II): 56-58. 12. Fugl-Meyer AR,Ji.asko L. Post-stroke hemiplegia and ADL-performance. Scand] Rehab Med 1980; (Supp!. 7):140-152. 13. Hulter-A~berg K, Sonn U. The cumulative structure of personal and instrumental ADL. Scand] Rehab Med 1988; 21:171-177. 14. Lindmark B, Hamrin E, Tornquist K. Testing daily functions post-stroke with standardized practical equipment. Scand] Rehab Med 1990; 22:9-14. 15. Whiting S, Lincoln N. An ADL assessment for stroke patients. Br] ace Ther 1980; 43:44-46. 16. Eaking P. Assessments of activities of daily living: a critical review. Br] ace Ther 1989; 52: 11-15. 17. Eaking P. Problems with assessments of activities of daily living. Br] ace Ther 1989; 52:50-54. 18. Sheikh K. Disability scales: assessment of reliability. Arch Phys Med Rehab 1986; 67:245-249. 19. Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged. The index of ADL: a standardized measure ofbiological and psychosocial function. ]AMA 1963; 185:914-919. 20. Klein RM, Bell B. Self-care skills: behaviorai measurement with Klein-Bell ADL Scale. Arch Phys Med Rehab 1982; 63:335-338. 21. Mahoney FI, Barthel DW. Functional evaluation: the Barthel Index. M Med] 1965; 14:61-65. 22. Sarno JE, Sarno MT, Levita E. The functional life scale. Arch Phys Med Rehab 1973; 54:214-220.
71
23. Schoening HA, Iversen IA Numerical scoring of self-care status: a study of the Kenny self-care evaluation. Arch Phys Med Rehab 1968; 49:221-229. 24. Wood-Dauphinee SL, Opzoomer MA, Williams JI, Marchand B, Spitzer Wo. Assessment of global function: the reintegration to normal living index. Arch Phys Med Rehab 1988; 69:583-590. 25. Ebrahim S, Nouri F. Measuring disability after a stroke.] Epid Comm Health 1985; 39:86-89. 26. Evans RL, Noonan WC, Bishop DS, Hendricks RD. Caregiver assessment of personal adjustment after stroke in a Veterans Administration Medical Center outpatient cohort. Stroke 1989; 20:483-487. 27. Holbrook M, Skilbeck CEo An activities index for use with stroke patients. Age and Ageing 1983; 12:166-170. 28. Lincoln NB, Edmans JA. A re-validation of the Rivermead ADL scale for elderly patients with stroke. Age and Ageing 1990; 19: 19-24. 29. McClatchie G, Schuld W, Goodwin S. A maximised-ADL index of functional status for stroke patients. Scand] Rehab Med 1983; 15:155163. 30. Arnadottir G. The brain and behaviour: assessing cortical dysfunction through activities of daily living. St. Louis, MO: Mosby, 1990. 31. Dutil E, Forget A, Vanier M, Gaudreault C. Development of the ADL profile: an evaluation for adults with severe head injury. ace Ther Health Care 1990; 7:7-21. 32. Soderback I. A housework-based assessment of intellectual functions in patients with acquired brain damage. Development and evaluation of an occupational therapy method. Scand] Rehab Med 1988; 20:57-69. 33. Yerxa EJ, Baum S. Engagement in daily occupations and life satisfaction among people with spinal cord injuries. ace Ther] Res 1986; 6:5, 271-283. 34. Soderback I, Lilja M. A study of activity in the home environment among individuals with disability following a stroke. Submitted. 35. Cronbach LE. Coefficient alpha and the international structure of tests. Psychometrica 1951; 16:297-333. 36. Flanagan JG The critical incident technique. Psych Bull 1959; 4:327-358. 37. Schmidt SM, Herman LM, Koenig P, Leuze M, Monahan MK, Stubbers RW. Status of stroke patients: a community assessment. Arch Phys Med Rehab 1986; 67:99-102. 38. Norris VK, Parris Stephens MA, Kinney JM. The impact of family interactions on recovery from stroke: help or hindrance? Gerontal 1990; 30:535-542.
This study was supported by grants from the Karolinska Institute and from Konung Gustavs och Drottning Viktorias Stiftelse. Our grateful thanks are due to our colleague Margareta Lilja for her assistance with data collection and to Assistant Professor Bengt Ramund for his statistical advice.
Ingrid Soderback, DrMSc, OT Department of Rehabilitation Medicine Karolinska Institute/Hospital; and Department of Social Care and Rehabilitation Stockholm College of Health and Caring Sciences Stockholm, Sweden
Gorel Caneman, OT Jan Ekholm, MD, PhD Department of Rehabilitation Medicine Karolinska Institute/Hospital Stockholm, Sweden Most persons suffering from stroke show impairments l that require dependence on a helper in performing activities of daily living (ADL). 2 In these cases, the aim of occupational therapy is, through participation in ADL training, the use of technical aids, and adaptation of the environment, to help these persons to be as independent as possible. 3 Within this process, indices are used for assessing performance ability and degree of dependence in ADL and for evaluating the effects of intervention. 4 Within medical care and nursing, ADL assessment scales are used for describing the degree of nursing care required 5- 7 and for evaluating different forms of care. 8-11 Some of these ADL scales contain items that assess self~maintenance (dressing, elimination, mobility, bathinglhygiene, eating, and emergency telephone communication), while others include items that assess instrumental activities of daily living (I_ADL)I2-15 (shopping, cleaning, using public communication, washing, and preparing food). For optimal usefulness, ADL scales need to be valid and have acceptable reliability 4,I6-18 in relation to the person being assessed (age, diagnoses, disability, culture). Here three different areas for NeuroRehabil 1993; 3(2):60-71 Copyright © 1993 by Andover Medical.
Causes of Dependence after Stroke
the use of ADL scales are identified. There are "global" ADL scales, which are scales intended for use with several different diagnosis groups according to their manuals. 19-24 Of the global scales, the Katz Index of ADL 19 and the Barthel Index 21 are usually employed for Swedish patients. These scales are used mainly for describing and predicting the dependence level in groups. The Katz Index of ADL is used for measuring function and objective prediction of necessary levels of care. The index includes six variables and six items (bathing, dressing, going to the toilet, transferring, continence, and feeding). In each of the six activities, the patients are classified as independent, partly dependent, or dependent. The Barthel Index is a simple-to-use functional evaluation of independence, useful in scoring improvement in the rehabilitation. Ten variables (feeding, moving from a wheelchair to bed and return, personal toilet, getting on and off toilet, bathing self, walking on level surface, ascending and descending stairs, dressing, controlling bowels, and controlling bladder) are measured. The patient's performance is scored 0 to 100, where 100 is independent. Another global ADL scale, the Klein-Bell Activities of Daily Living scale (K&B ADL Scale}20 is, according to the manual, useful as a basis for clinical decision making in occupational therapy and for evaluating an individual's ADL training. The K&B ADL scale contains six variables-dressing, elimination, mobility, bathing/hygiene, eating, and emergency telephone communications-with a total of 170 items. The patient's ADL performance is valued as 0 (no performance) or 1,2, or 3 (weighted points). The patient's performance is shown by a graph presented as a percentage of ADL independence. The scale is possible to use both in a hospital as well as in the patient's home environment. It is possible to run the K&B ADL scale assessment by observation during the patient's performance of the ADL tasks, in an interview, or with a combination of both. Apart from global ADL scales, there are diagnosisrelated ADL scales that concern impairment- and disability-specific items and describe, predict, and evaluate treatment in a specified diagnosis group of patients. There are many such diagnosis-related ADL scales for stroke victims. 15,25-29
61
There are also ADL scales originating from occupational therapy. They are aimed at assessing combinations of impairment and disability and for planning remediation treatment often in a specific diagnosis group such as stroke. Here areas of intellectual function and self-performance of personal care are represented,30,31 as is housework,32 but areas of interpersonal cooperation between the disabled person and his or her caregiver are not represented. ADL scales characteristically use an ordinal scale l9 ,21 indicated by such expressions as "can," "can with help," and "dependent,"23,25,3o or "performs" and "does not perform" the activity. 12 Do the results from these scales sufficiently express the causes of a person's dependence in personal care, and do they provide sufficient basis for planning remediation programs for the home care environment? In occupational therapy there is a need for ADL scales that assess the person's level of ADL performance as well as the causes of his or her dependence in self-care.
Aims
The aims of this study, which was approved by the Ethical Committee ofthe Karolinska Institute, were • to describe the causes of stroke victims' inability to perform personal care activities in their home environment~ about four years after the incident • to check the item content and the homogeneity of the categories and variables of the K&B ADL scale 20 for stroke victims and Swedish culture • to describe, fi)r stroke victims, the relationship between the time used for personal care and other activities, and for sleep and rest. 33
METHOD Subjects
The participants in this study (n = 34) were selected by lot from the first three randomly assigned quartiles (n = 68) organized by the number of items for which the participants of a greater population of traumatically brain damaged individuals and stroke victims (n = 195}1 had reported dependence in self-maintenance (n =
62
NEUROREHABILITATION / SPRING 1993
90, 46%). From the allotted 34 persons, 17 took part in the present study (6 women and 11 men ranging in age from 35 to 75 years, mean age 61 years), stroke victims about four years previously and living in their own homes (5 in service apartments). Of the 17 dropouts, 3 were independent in personal care by the time of the study and not suitable for the aim of the study, 1 was living at a nursing home, 1 was unable to communicate, 2 withdrew during the data collection because they did not want to be filmed, 6 declined to participate, and 4 could not be found at the addresses given.
The participants were contacted by letter and then by telephone. Their present age, diagnoses, main impairment (as stated by the medical record three years earlier), self-estimated time they spent performing personal care during the 24 hours (according to the time-log, see below), and proportion of personal care ability/disability (according to the K&B ADL scale, see below) are presented in Table 1. All were dependent on another person ("helper") (wife, n = 7; husband, n = 3; mother, n = 1; home help service or service apartment staff, n = 6).
Table 1. The participating stroke victims' diagnoses, main impairment, estimated hours used for personal care activities during 24 hours (53) and personal care maintenance ability/inability (26). Estimated Hours Used
during
24 Hours for
Age
35 59 55 54
Diagnosis Hemorrhage cerebri Infurctus cerebri Infurctus cerebri Thrombosis cerebri
Impairment
Self-Care Activities
Personal
Personal
Care
Care
Ability
(% scores
ofK&:B ADL scale)
Inability
(% scores
ofK&:B ADL scale)
Percentage ofItemsof K&:BADL Scale that Are Clearly, Permanendy, Not Applicable
6
Percentage of Items of K&:BADL Scale tbatAre Not Assessed
27 68 88
0 63 26 4
76 78
15 12
10
0 0 15
0 0 0 0
53 Hemorrhage cerebri 52 A carotic internal dx.,
Slight hemiparesis sin., tremor Hemiparesis sin., cortical blindness Hemiparesis sin., spatial dysgnosia Slight hemiparesis dx., dyspraxia, dysphasia Hemiparesis dx., spasticity Hemiparesis sin.
50 Hemorrhage sub-
Hemiparesis dx., dysphasia
2
31
50
4
53
Hemiparesis dx.
3
86
6
7
92
2
6
0
70 93 29 28
16 2 66 51
14
5 5 9
0 0 0 13
52
23
25
0
occlusion
51 73 66 74 73 69 74 73 67
arachnoidalis Hemorrhage subarachnoidalis Hemorrhage subarachnoidalis Infurctus cerebri Stroke Cerebr.!l insult Intracerebralis hematoma Cerebral insult and hemorrhage subduralis Hemiplegia cerebralis sin. Infurctus cerebri Infurctus cerebri
94
3 9 4
Hemiparesis dx., dysphasia Hemiparesis dx., dysphasia Slight hemiparesis dx. Hemiparesis dx. Hemiparesis sin.
4 5 3
10
6 8 9
Hemiparesis dx., dysphasia Hemiparesis sin.
2
55
27
18
0
Slight hemiparesis sin. Hemiparesis sin., spatial dysgnosia
4 2
86 60
9 22
5
18
0 0
sin. = sinister, dx. = dexter
Causes of Dependence after Stroke
Design The participants (and their spouses) were visited by occupational therapists (GC, ML, IS) at home two times in about one month. At the first visit a participation agreement was presented and an interview (GC or ML) took place. 34 During a conversation, the participants were asked to fill in their main activity for each hour during a 24-hour period in a self-administered activity log according to the instructions in the log.33 They mailed the activity logs back to the occupational therapists within a week. (The logs were completed and returned by 14 participants.) The activities the persons had noted were computerized, using the d-base program, and sorted by hour into the categories Self-Maintenance, Other Activity, and Sleep/Rest Activities. At the second visit, the participants were asked to choose among ADL included in the first Swedish translation of the K&B ADL scale. 20 The persons performed the self-elected personal care ADL with assistance from the helpers in the usual way. The occupational therapist (GC) observed, but did not participate. The person's performance of ADL not observed, but included on the K&B ADL scale, was estimated by the occupational therapist based on the person's or spouse's answers to questions. The observations and the answers were recorded according to the manual of the K&B ADL scale using the data sheet. The analyses show the percentage scores of the person's ability, of the person's inability, of the items not applicable, and of the items impossible to assess (see Tables 1 and 8). The number (3 to 16, mean 10) of ADL selected and performed depended on the person's own choice, the degree of impairment! disability, the person's speed when performing the ADL, and the time available for observation. The homogeneity of the categories and variables of the K&B ADL scale was estimated using Cronbach's coefficient alpha. 35 The self-selected ADL (second visit) were videotaped (IS) (13 to 45 minutes, mean 27 minutes, which was comparable to a nonparticipatory observation) simultaneously with the observations performed using the K&B ADL scale. The videotaped ADL (3 to 16, mean 10) were analyzed qualitatively (GC and IS at the same time) to find
63
the causes of the person's inability to perform personal care activities. The videos were viewed several times, and the critical incidents 36 (i.e., activities) selected and their positions in the videos noted. Critical incidents defined in this study are all the activities that the persons said or demonstrated were performed unacceptably to themselves, or that they were unable to perform, or all activities that spouses and home helpers said or demonstrated that they considered were not performed or were not acceptably performed. The films were viewed again and stopped at the critical incidents where one or more causes of the inability to perform the personal care activities were noted, or the dialogue tape recorded, until no more information could be gained. The data collected were checked for interobserver reliability (GC and IS) and compared for validity control with the person's percentage of the inability scores of the K&B ADL scale (Table 1). This data-documented material was computerized using the d-base program, listed, and sorted into descriptions. These descriptions were categorized in codes common to occupational therapy terms: descriptive codes of causes, substantive codes of causes, and theoretical codes ofcauses. An example of descriptive codes of causes is a person who does not check or correct an ADL performed. A consequence could be diminished performance of further tasks. These descriptive codes were coded into five substantive codes for cause. Here the causes of why the person did not check or correct a performed ADL could be, for example, impaired intellectual function. Among the substantive code causes, three theoretical codes for causes were identified. These theoretical codes for causes of why persons did not perform ADL were intrapersonal (i.e., depending on the person's ability), interpersonal (i.e., depending on the communication and cooperation process with the helper), and environmental (i.e., depending on factors in the person's own home or its surroundings). Mter coding the data-documented material, the relevance and validity of each category were further checked by the number of activities and the number of persons exhibiting the category (Tables 2 through 6). The videotapes were also analyzed action by action to check the content validity ofthe items of
64
NEUROREHABILITATION / SPRING 1993
the K&B ADL scale for Swedish stroke victims. Each action the person performed dependently was recorded, grouped, and compared with the items of the K&B ADL scale.
RESULTS The Time Used for Personal Care Activities, Other Activities, and Sleep and Rest Analyses of the activity log show the person's activities every hour over a 24-hour period (Fig. 1). The time spent on personal care activities was for half of the participants less than 2 hours and for the other half less than 4 hours (mean = within 3 hours 14 minutes) (see Table 1). The personal care activities (see Fig. 1) were performed mainly between 7 A.M. and 11 A.M. and between 10 P.M. and midnight. Half of the persons had 1 or 2 hours of rest in the afternoon between 1 P.M. and 6 P.M. The persons got up between 6 A.M. and 11 A.M. and went to bed between 8 P.M and midnight. The most active times were around 11 A.M., 1 P.M., 5 P.M., and 7 P.M. The person's ability to perform ADL according to the results of the K&B ADL scale varied between 27% to 94% (see Table 1.)
14 13
12 11 ( 10
•
i1 4
O'clodl
Figure 1. The activity log showing the person's activities every hour over a 24-hour period (n = 14).
Causes of Inability to Perform Personal Care Activities The analyses of the videotaped material where participants perform personal care activities revealed CdUses of inability that were categorized as follows:
• Intrapersonal causes (theoretical codes) where necessary activities were not performed because the person could not (substantive codes) do so (see Table 2) • Interpersonal causes (theoretical codes) where the causes of nonperformance were that the person handed over (substantive codes) the activities to the helpers (see Table 3) or where the helpers took over (substantive codes) performance of the activities (see Table 4), or that the person partly performed the personal care activities during negative interference (substantive codes) from the helpers (see Table 5) • Environmental causes (theoretical codes), objects or clothes that were not adapted or were wrongly adapted (substantive codes) (see Table 6).
The Content Validity and the Homogeneity of the K&B ADL Scale The K&B ADL scale is well suited for reliably and validly assessing personal care activities in stroke patients in Sweden. This statement is based on analysis of the content validity (comparing the action-by-action check of the videotapes and the 170 items of the K&B ADL scale). The video analyses and the items on the K&B ADL scale corresponded well. However, seven items should be added to the K&B ADL scale and the contents of four items changed (Table 7). These items were observed in the videotapes where the participants were unable to perform the activities. Some variables (putting on a bra, using extra devices, demonstrating voiding control, managing menstrual needs, wiping oneself, and eating semisolid food) were not chosen by the participants and others or were not observed for ethical reasons (Table 8). The items of some of the variables (Table 8) did not measure a common behavior (IV:G brushing teeth, IV:I shaving, IV:J nose blowing, V:A eating solid food, and V:C eating liquid food). For the other variables, the homogeneity (Table 8) ranged from a = 0.58 to a = 1.0.
Causes of Dependence after Stroke
65
Table 2. Intrapersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed cannot perform personal care activities because of some of the listed impairments. Effects: The persons mighi have help to perform the activities. Substantive Codes: Causes of Impaired Performance
Descriptive Codes: Causes of Impaired Performance
Impaired motor function
Inability to move
Impaired sensory function
Cannot perceive touch
Impaired intellectual function
Impaired emotional function
Feel pain Inability to perform actions simultaneously Inability to interpret space No control or correction of an activity Unconscious of ability Fear Impatience
Activities Not Performed Dressing, elimination, mobility, bathinglhygiene, eating Dressing, bathinglhygiene Dressing, mobility Dressing, elimination, bathinglhygiene Dressing, bathing/hygiene Dressing, mobility Dressing, mobility Dressing, mobility, bathing/hygiene Dressing, mobility
Number of Activities
Number of Persons
41
10
4
3
2
2 5
6
7 3
3
6
2
1 3
3
3
Table 3. Interpersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed do not perform personal care activities because they harul over the activities to the helpers. Effects: The persons don't perform activities and wait for help. Substantive Codes: Causes of Not Performed Activities Do not wish to perform the activities No attempt to perform the activities
Demand and expect that the helper will perform the activities
Descriptive Codes: Causes of Not Performed Activities Despite function It is the helper's paid work Have never tried Have tried, but lack self-reliance Have forgotten learned techniques Wishes, the patients think it is the best Need of social contacts
Passive acceptance of help
Docile
Activities Not Performed
Number of Activities
Number of Persons
Dressing, mobility, bathinglhygiene Dressing Dressing, bathing/hygiene
7
6
2 2
2
Dressing, bathing/hygiene
2
2
Dressing
2
2
Dressing, elimination, mobility, bathing/hygiene
7
4
Dressing, eating, bathing/hygiene Dressing, elimination, mobility, bathing/hygiene
6
6
7
4
I
66
NEUROREHABILITATION / SPRING 1993
Table 4. Interpersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed do not fulfil the performance of personal care activities because their helpers take over the activities. Effects: The persons don't perform activities and wait for help. Substantive Codes: Causes of Not Performed Activities
Descriptive Codes: Causes of Not Performed Activities
Reality
Otherwise the activity would not be performed
Overprotection
No increase in ability despite performance of these self-activities Avoid discomfort and disability confrontation Love
Disallow performed activities
No permission
No time tolerance
Helper anticipates the person's need for help Corrections from the "good mother" The helper's demand for quality in the activities The person's performance is underestimated and restrained It is the helper's wish and need to perform the activities The activities take too long to perform Hurry up the performance Not enough patience to wait until the person has finished
DISCUSSION Analysis of the videotapes revealed several new aspects of interpersonal activities that the authors had not previously considered. To be able to organize the causes, three theoretical codes for causes were created, five substantive codes for causes, and about 40 descriptive codes for causes of the data for things that hampered the stroke victim's personal care ability in the home environment (see Tables 2 through 6).
Activities Not Performed
Dressing, elimination, mobility, bathinglhygiene, eating, communication Dressing, elimination, bathinglhygiene Dressing, elimination, mobility, bathing/hygiene, eating, communication Dressing, mobility, bathing/hygiene Dressing, bathinglhygiene
Number of Activities
Number of Persons
6 3
7
5
9
12
2
3
Dressing, eating
3
Dressing, elimination, mobility, bathing/hygiene, eating Dressing, elimination, mobility, bathinglhygiene, communication Dressing, bathing/hygiene, eating
9
11
10
7
14
5
6
3
Dressing Dressing, mobility, bathinglhygiene Eating
The method used to reveal these causes of the person's inability to perform the self-estimated ADL may be questioned as the method is not well known and practiced. The two occupational therapists who performed the data analyses agreed on the interpretation of the causes, but may have been influenced by their work and life experience. This may also be an advantage as they both have long experience in stroke rehabilitation. The material had reached saturation point because all the descriptive codes for causes had been discovered repeatedly before all the data
Causes of Dependence after Stroke
67
Table 5. Interpersonal causes of the stroke victims' inability to perform personal care activities. Definition: The persons observed do not perform personal care activities during negative interference from the helpers.
Effects: The persons give up and show, for example, irritability, aggressiveness, and listlessness. Substantive Codes: Causes of Not Performed Activities
Descriptive Codes: Causes of Not Performed Activities
The helpers use the wrong technique
Unnecessary effort
The helpers use the same routine each time The helper is not present The helper has a wish to dominate
The person has various needs
The helper treats the person as an object when performing the person's activities Conflicts of opinion between helper and person
The person has acute needs Command the person performing activities Talk about the person in the third person or as "myself' Answer questions instead of the person It seems as if the person does not have human needs
Number of Activities
Number of Persons
Dressing, elimination, mobility, bathing/hygiene, communication Dressing, elimination, moving, bathinglhygiene, eating Elimination
2
2
Dressing, bathinglhygiene
2
2
Dressing, eating
2
3
Activities Not Performed
10
3
2 Elimination, bathing/ hygiene
2
2
The person is dissatisfied
Dressing, mobility, and eating
2
2
The helper is dissatisfied
Dressing, mobility, and eating
4
2
Table 6. Environmental causes of stroke victims' inability to perform personal care activities. Definition: The persons observed do not perform personal care activities because of lack of, or wrong adaptation of their
environment and clothes. Substantive Codes Causes of Not Performed Activity
No adaptation or wrong adaptation of environment No adaptation or wrong adaptation of clothes
Descriptive Codes Causes of Not Performed Activity
Furniture arrangement and choice of floor material Clothes difficult to put on or take off, or restrain movement Not normal wear
Number of Activities
Nuinber of Persons
Dressing, bathing/hygiene, eating. communication
18
8
Dressing, mobility
16
12
Activities Not Performed
Dressing
3
68
NEUROREHABILITATION I SPRING 1993
Table 7.
Item content of Klein-Bell Activities of Daily Living Scale.
1. Items that should be added to existing categories and variables of K&B ADL scale with relevance to stroke victims and Swedish culture
Categories I.
Dressing
III. Mobility
Variables Shoes Button sweaterlcoatl jacket Extra devices Bed mobility Ambulation
IV. Bathing/Hygiene V. Eating
Dry body Eat solid food
Item
Number of Persons Who Performed Activities
Remove shoes Remove sleeve with cuff or cuff-link Put on watch/jewelry Raise behind while lying down Pick up object from floor Apply face cream Handle cigarette safely
4 10 1
3
4 3
2. Items of K&B ADL scale suggested for change to suit stroke victims and Swedish culture Categories
Variables
Item
Changed to
Bed mobility
92. Go from supine to at least 70° sitting for one minute
Ambulation
94. Maintain ambulation position for 10 seconds
IV. Bathing/Hygiene
Clip nails
148. Trim all nails of both hands and feet
V.
Telephone
167. Dial (standard) number
Divide into two items: 1. Go from supine to at least 70° sitting in bed for 1 minute 2. Go from supine to sitting on edge of bed with feet over side for 1 minute Divide into two items: 1. Maintain ambulation position standing 2. Maintain position sitting in a wheelchair Divide into two items, one for hands and one for feet Dial an important number and communicate reason for call
III. Mobility
Emergency Telephone Communication
Source: Klein RM, Bell B. Self-care skills: behavioral measurement with Klein-Bell ADL scale, Arch Phys Med Relw,bil 1982; 63:335-338.
had been analyzed. On the other hand, it is probable that other causes, particularly substantive and descriptive codes, are to be found in other situations. It would have been possible to organize the videotapes in this study in different ways. The one chosen here was an attempt to provide a com-
bined overview of all the multifaceted causes, in different categories for the study population, which combine to render a person dependent on others for his or her daily life. However, further scientific work is necessary to construct a theory to explain the relationships among the descriptive, substantive, and theoretical codes for causes. For
Causes of Dependence after Stroke
Table 8.
Reliability of Klein-Bell Activities of Daily Living Scale. 20
Categories I.
II.
Dressing
Elimination
II I. Mobility
IV.
Bathing/H ygiene
Variables A B C D E F G H I
J
A B C D E F G H I
J
A B C D E A B C D E F G H I
J V.
69
Eating
VI. Emergency Telephone Communications
K L A B C D A
Obtain clothing from bureau Obtain clothing from closet Socks Shoes Shorts/Pants Pullover shirt Button shirt/sweater/jacket!coat Bra Hat Extra devices Voiding control Urination Wiping Manage menstrual needs Re-do clothing Bowel control Defecation Wiping Re-do clothing Flushing Bed Mobility Ambulation Get into car Get out of car Mobility through doors Achieve bathing position Accomplish set-up Adjust water Apply water to body Lather body Dry body Brush teeth Comb hair Shave Blow nose Clip nails Take medicine Eat solid food Eat semisolid food Eat liquid f()()d Drink Telephone
CI.
0.97 1.0 0.97 0.94 0.92 0.97 0.96 1.0
0.63 0.95 0.96 1.0 0.83 0.87 0 0.87 0.91 0.92 0.96 0.97 0 0 0.83 0 0.86 0.80 -0.002 0.58 0.29 -8.3 0 0 -2.23 -1.4 0.06 0.83
Number of Items 5 2 9 6 6 7 12 5 2 11 2 2 3 3 3 2 2 2 3 4 10 5 6 5 1 1 2 I 4 3 5 4 5 3 1 I
7 2 2 4 6
Number of Observations of Self-Elected Personal Care Activities 16 17 17 17 15 16 16 0 12 0 0 16 16 0 15 16 16 0 16 17 17 17 17 17 17 17 17 17 17 17 17 17 17 17 17 3 4 17 0 17 17 17
70
NEUROREHABILITATION / SPRING 1993
clinical use, it is recommended that the number of descriptive codes should be reduced to make interpretation and clinical decision making practicable. Some studies describe or report on a single cause and each of these tallies with one of the causes revealed in this study. It is well known that stroke victims have long-term sensorimotor, intellectual, and emotional impairments34 that make them unable to perform daily activities. It was surprising to discover the great importance of interpersonal causes in a persons' ability to perform daily activities. The fact that human activity is described in occupational therapy as originating from will, 3 which stimulates as well as hinders actions, supports here the cause "handing-over," "does not wish to," "no attempt," "demands and expects that the helper will perform the activities," and "passive acceptance." In the "taken over activity" cause, the helper's role is included where the activity is preferred for motives of "reality," "overprotection" or "disallowed performed activity," "no permission," and "time tolerance." Helpers here assume different rolese.g., professional nurse, spouse, or mother (without actually being any of these)-and most act from love; a few feel compelled to help. On the other hand, the stroke victim's role 11 depends on his or her subjective experience of being healthy or sick, and the stroke victim's condition is decisive fi)r the particular activity level. Schmidt et al. 37 have shown that stroke victims living with another person are less able to perform daily activities than those living alone, which could be interpreted as an explanation of the cause "take over" of activities. Another study38 reports that the patients complain of getting unsolicited help and advice, which could be interpreted as "negative interference." We have not found reports of inappropriate environments documented in occupational therapy literature on stroke victims. Even though the available literature partly supports the results ofthis study, these are valid only for the population concerned, and the study should be repeated with stroke patients at the acute stage. The number of participants in this study was very small for checking the content validity and the homogeneity of the K&B ADL scale. However, it can be concluded that the K&B ADL scale is useful
for clinical decision making and evaluation of occupational therapy intervention. This is shown by the high a-coefficients (Table 8) for most of the variables, the levels being comparable with criteria fi)r test scores. The variables that were not comparable with test scores (a >- 0.90) need to be checked in future studies. The items of the variables (Table 8) that did not assess a common behavior should normally be discarded, but not in this case, as too few persons were assessed. Other assessment instruments covering undressing are available, 19.21,25 but undressing is not a variable in the K&B ADL scale. For stroke victims, performance of some undressing items are relevant to the scale (Table 6). A conclusion from this study is that the participants' performance level in personal care 20 Cfable 1) did not correspond to the time used 33 (Fig. 1). The persons who spent up to 2 hours were rated on the K&B ADL scale as performing 31% to 94% and those who spent up to 4 hours were rated as performing 27% to 93%. One person used up to 9 hours of a 24-hour period for personal care activities, despite a relatively high score (68%) on the K&B ADL scale. This result does not tally with earlier assumptions in occupational therapy that the individual can perform personal care only if he or she has plenty of time. The results of this study will, it is hoped, help occupational therapists with stroke patients to identity earlier more and new causes of dependence in personal care in the home environment. Such identification could lead to obstacles to or hampering of interpersonal relations being reduced or overcome through adequate measures and ADL training programs for stroke victims and their helpers, and adaptation of the environment.
REFERENCES J, Caneman G. Impairment/function and disability/activity. Three years after cerebrovascular incident or brain trauma. Int Dis Studies 1991; 13:67-73. 2. Bernspang B. Consequences of stroke. Aspect5 of impairments, disabilities and life satisfaction: with special emphasis on perception and occupational therapy. Umea University Medical Dissertation NS 202; 1-58. 1. SOderback I, Ekholm
Causes of Dependence after Stroke
3. Kielhofuer G.A rrwdel of human occupation: theory and applicoiion. Baltimore: Williams and Wilkins, 1985. 4. Law M. Measurement in occupational therapy: scientific criteria for evaluation. Can] ace Ther, 1987; 54:133-138. 5. Brorsson B, Hulter-Asberg K. Katz Index ofIndependence in ADL. Reliability and validity in shortterm car;,e. Scand] Rehab Med 1984; 16:125-132. 6. Hulter-Asberg K. Elderly patients in acute medical wards and home care. Stockholm: Uppsala University, Almquist och Wiksell International, 1986. 7. Tornquist K, Lovgren M, Soderfeldt B. Sensitivity, specificity, and predictive value in Katz's and Barthel's ADL indices applied on patients in long term nursing care. Scand] Caring Sci 1990; 4:99-106. 8. Edmans JA, Towle D. Comparison of stroke unit and non-stroke unit: inpatients' independence in ADL. Br] ace Therl990; 53:415-418. 9. Hamrin EKF, Lindmark B. The effect of systematic care planning after acute stroke in general hospital medical wards. ] Advanced Nurs 1990; 15:1146-1153. 10. Law M, Letts L. A critical review of scales of activities of daily living. Am ] ace Ther 1989; 43:522-527. 11. Smith DS. Outcome studies in stroke rehabilitation., Stroke 1990; 21 (Supp!. II): 56-58. 12. Fugl-Meyer AR,Ji.asko L. Post-stroke hemiplegia and ADL-performance. Scand] Rehab Med 1980; (Supp!. 7):140-152. 13. Hulter-A~berg K, Sonn U. The cumulative structure of personal and instrumental ADL. Scand] Rehab Med 1988; 21:171-177. 14. Lindmark B, Hamrin E, Tornquist K. Testing daily functions post-stroke with standardized practical equipment. Scand] Rehab Med 1990; 22:9-14. 15. Whiting S, Lincoln N. An ADL assessment for stroke patients. Br] ace Ther 1980; 43:44-46. 16. Eaking P. Assessments of activities of daily living: a critical review. Br] ace Ther 1989; 52: 11-15. 17. Eaking P. Problems with assessments of activities of daily living. Br] ace Ther 1989; 52:50-54. 18. Sheikh K. Disability scales: assessment of reliability. Arch Phys Med Rehab 1986; 67:245-249. 19. Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged. The index of ADL: a standardized measure ofbiological and psychosocial function. ]AMA 1963; 185:914-919. 20. Klein RM, Bell B. Self-care skills: behaviorai measurement with Klein-Bell ADL Scale. Arch Phys Med Rehab 1982; 63:335-338. 21. Mahoney FI, Barthel DW. Functional evaluation: the Barthel Index. M Med] 1965; 14:61-65. 22. Sarno JE, Sarno MT, Levita E. The functional life scale. Arch Phys Med Rehab 1973; 54:214-220.
71
23. Schoening HA, Iversen IA Numerical scoring of self-care status: a study of the Kenny self-care evaluation. Arch Phys Med Rehab 1968; 49:221-229. 24. Wood-Dauphinee SL, Opzoomer MA, Williams JI, Marchand B, Spitzer Wo. Assessment of global function: the reintegration to normal living index. Arch Phys Med Rehab 1988; 69:583-590. 25. Ebrahim S, Nouri F. Measuring disability after a stroke.] Epid Comm Health 1985; 39:86-89. 26. Evans RL, Noonan WC, Bishop DS, Hendricks RD. Caregiver assessment of personal adjustment after stroke in a Veterans Administration Medical Center outpatient cohort. Stroke 1989; 20:483-487. 27. Holbrook M, Skilbeck CEo An activities index for use with stroke patients. Age and Ageing 1983; 12:166-170. 28. Lincoln NB, Edmans JA. A re-validation of the Rivermead ADL scale for elderly patients with stroke. Age and Ageing 1990; 19: 19-24. 29. McClatchie G, Schuld W, Goodwin S. A maximised-ADL index of functional status for stroke patients. Scand] Rehab Med 1983; 15:155163. 30. Arnadottir G. The brain and behaviour: assessing cortical dysfunction through activities of daily living. St. Louis, MO: Mosby, 1990. 31. Dutil E, Forget A, Vanier M, Gaudreault C. Development of the ADL profile: an evaluation for adults with severe head injury. ace Ther Health Care 1990; 7:7-21. 32. Soderback I. A housework-based assessment of intellectual functions in patients with acquired brain damage. Development and evaluation of an occupational therapy method. Scand] Rehab Med 1988; 20:57-69. 33. Yerxa EJ, Baum S. Engagement in daily occupations and life satisfaction among people with spinal cord injuries. ace Ther] Res 1986; 6:5, 271-283. 34. Soderback I, Lilja M. A study of activity in the home environment among individuals with disability following a stroke. Submitted. 35. Cronbach LE. Coefficient alpha and the international structure of tests. Psychometrica 1951; 16:297-333. 36. Flanagan JG The critical incident technique. Psych Bull 1959; 4:327-358. 37. Schmidt SM, Herman LM, Koenig P, Leuze M, Monahan MK, Stubbers RW. Status of stroke patients: a community assessment. Arch Phys Med Rehab 1986; 67:99-102. 38. Norris VK, Parris Stephens MA, Kinney JM. The impact of family interactions on recovery from stroke: help or hindrance? Gerontal 1990; 30:535-542.
