Three different points of view in stroke rehabilitation: patient, caregiver, and physiotherapist ¨ zgu ¨ nlu¨er3, ¨l U Yasemin Parlak Demir1, Nilay C¸o¨mu¨k Balci2, Nezehat O Naime Ulug˘3, Esra Dogru4, Muhammed Kilinc 5, Sibel Aksu Yildirim5, ¨ znur Yilmaz5 O 1
Fatih University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey, Baskent University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey, 3Hacettepe University, Department of Physical Therapy and Rehabilitation, Ankara, Turkey, 4 Inonu University, School of Physiotherapy and Rehabilitation, Malatya, Turkey, 5Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey 2
Background: The similarities or differences of the threesome (physiotherapists, patients, and caregivers) thought about the process of stroke rehabilitation can play a key role in the success of rehabilitation. Objective: The aim of this qualitative study was to investigate the perspectives of the threesome, with regard to the two themes of the study: (1) What are the problems faced by the patients after stroke?; and (2) What does recovery after stroke mean to you? Methods: The qualitative questions and possible answers were prepared by four physiotherapists. The answers were matched to International Classification of Functioning (ICF) components. Seventy patients who were having treatment as in-patient rehabilitation centers, their caregivers, and physiotherapists were invited to the study. After the questions were asked and the possible response choices were presented, subjects were asked to prioritize these response choices. Results: One hundred and fifty-nine subjects, including 53 patients, 53 caregivers, and 53 physiotherapists, were included to the study. When the theme 1 were examined, we found that the patients’ first priority was functional abilities (ICF: body function and structure) such as using the hands and feet while the caregivers and physiotherapists prioritized self-care problems (ICF: activity and participation). The most common response to the theme 2 was ‘‘being in same health condition before the disease’’ (ICF: activity and participation) among the patients and caregivers and ‘‘being able to move arm and leg on the affected side’’ (body function and structure) among the physiotherapists. Conclusion: As a conclusion, problems faced by the patients, caregivers, and physiotherapists were perceived under the same ICF domain and that caregivers’ and physiotherapists’ priorities were the same. Keywords: Stroke rehabilitation, International Classification of Functioning (ICF), Patient’s and caregiver’s priorities, Physiotherapist
Introduction Each year, over 15 million people suffer from stroke worldwide and some 80% of these patients have to endure a life of hemiparesis.1 Many of the patients experience permanent problems after being discharged from the hospital. They have suffered from muscle weakness, balance disorder, cognitive impairment, immobility, and dependence in activities of daily living. The patients
*Correspondence to: M. Kılınc, Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey. Email: [email protected] ß W. S. Maney & Son Ltd 2010, 2015 DOI 10.1179/1074935714Z.0000000042
referred to physiotherapy and rehabilitation programs to deal with these problems.1,2 Rehabilitation is an active, repetitive, and didactic ‘‘problem solving’’ method aiming to alleviate the patient’s disability.3–5 Rehabilitation is a team effort. Three parties or groups have to work together during the rehabilitation stage of the stroke. First party comprises the patients, who suffer from functional deficits. The second party is the caregiver/family member who stays by the patient in the course of the changes in life and the third party is the physiotherapist who plays a key role in the rehabilitation process. Topics in Stroke Rehabilitation
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Studies in the literature show that the expectations of the patients and the physiotherapists are different. Patient’s expectations tend to be very high in the first few weeks of stroke in terms of recovery, but this expectation is replaced by frustration as time goes by. Expectation of a full recovery is believed to be a coping mechanism of the patient and the caregiver.6,7 Previous studies defined post-stroke recovery as improvement in physical functions. In recent years, many healthcare professionals lent support to the opinion that post-stroke recovery did not depend solely on functional abilities, that personal and environmental components were also important, and that the level of independence in activities of daily living and social participation need to be taken into account in the recovery.7 Therefore, examining the problems encountered by the patient following stroke and recovery in the context of biopsycho-social model of International Classification of Function (ICF), which incorporate body functions, activity, and participation, is the ideal approach for rehabilitation (Fig. 1). Bio-psychosocial model of disability according to ICF.8 Numerous studies which investigated the problems faced by the patients, caregivers, as well as healthcare professionals following stroke and their attitude towards treatment exist in the literature.9–13
The results of these studies are important in formulating rehabilitation strategies and assessing the outcome of rehabilitation. However, these studies include the perspectives of one or two groups at most. To the best of our knowledge, there is not a study that assessed the perspectives of all three parties of rehabilitation, namely, the patient, caregiver, and the physiotherapist. Furthermore, when the results of the previous studies were reviewed, we found the results difficult to interpret due to the absence of a common language or uniform terminology in the expression of the problems following stroke, functional level, and recovery. Two questions have been selected in the present study: 1. What are the problems faced by the patients after stroke? 2. What does recovery after stroke mean to you?
The aim of the study was to address and compare the perspectives of the patients and caregivers, the healthcare consumers, the physiotherapists, and the healthcare provider, with regard to the two questions of the study. This study, to the best of our knowledge, is the first study that examined the perspectives of the stroke patients, their caregivers, and physiotherapists concurrently in a bio-psycho-social approach, providing a common language to describe health and functionality.
Figure 1 Bio-psycho-social model of health according to ICF(12).
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Methods Participants The study which was carried out from January 2013 to December 2013 was a qualitative descriptive design. The study was conducted on patients from three outpatient physiotherapy clinics in Ankara. All the patients, their caregivers, and their physiotherapists who fulfilled the inclusion criteria were included to the study. In the present study, three groups’ perspectives were assessed: 1. stroke patients; 2. caregivers of stroke patients; 3. physiotherapists of stroke patients. Same questions were asked to all groups. Seventy patients who were having treatment as three inpatient rehabilitation centers, caregivers who were looking after these patient (n570), and physiotherapist who work treating these patients (n570) were invited to participate in the study. These three groups consisted a triad. The data collection and assessment procedure is shown in Fig. 2.
Interview questions The qualitative questions to be asked to the subjects and possible answers were prepared by four physiotherapists with a mean 20 years of professional experience. Following a thorough literature review,
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a question bank was constructed that included items to probe the perspectives of the patients, caregivers, and physiotherapists. The choices were selected from possible responses which all groups gave priority to. The understandability of the questions and the response choices were tested before the commencement of the study. The answers were matched to ICF components. Answers of the questions and corresponding ICF components are presented in Tables 1 and 2. Once the questions and response choices were established, the questionnaire was administered by four physiotherapists. Physiotherapists who participated in the preparation of the questionnaire did not participate in the administration of the questionnaire.
Inclusion criteria 1. patients: subacute and chronic stroke patients who were attending post-stroke rehabilitation program; 2. caregiver: primary person who was 18 years of age and over, only family caregiver, lived with the patient, and provided care for at least 2 hours a day. 3. physiotherapist: physiotherapists with at least 2 years of experience in stroke rehabilitation.
Exclusion criteria 1. patients with cognitive impairment, dementia and acute brain lesion that cause consciousness problems (standardized mini-mental state exam score v23);
Totally 210 (70*3) participant 70 Patients, 70 caregivers, 70 physiotherapists
Number of participants who included to the study
Excluded (n:17*3 = 51)
(53*3 = 109)
Comminication problems (n = 2*3) Additional neurological impairment (n = 3*3) Less than 2 years experience (n = 3*3) Cognitive impairment (n = 3*3) Anyone (patient, caregiver or physiotherapists) who did not accept to participate the study (n = 6*3)
53 patients 53 Caregivers 53 Physiotherapists Figure 2 Data collection and assessment procedure.
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2. patients with speech disorder; 3. patients with neurological (other than stroke) or sensory disorder, systemic and musculo-skeletal diseases; 4. patients who suffered from multiple episodes of stroke; 5. we asked the physiotherapists who treated more than one patient to consider particular patient who was a subject in the study while answering the questionnaire; 6. if either one of the three related parties (patient, his/ her caregiver, his/her physiotherapist) was unavailable, the remaining parties were also excluded.
Research Ethics Committee. Informed consent was obtained from patients, caregivers, and physiotherapists.
Ethical approval was obtained from the Hacettepe University Medical, Surgical and Pharmaceutical
The stroke patients, their caregivers, and physiotherapists were asked the following questions:
Assessment procedure Patient, caregiver and physiotherapist demographics were recorded. Demographic characteristics included: 1. patients: age, sex, time since stroke and affected side; 2. physiotherapist: age, sex, duration of professional experience; 3. caregiver; age, sex, duration of daily care.
Table 1 Question 1, its statements, and corresponding ICF components Question 1– Rank the problems faced by the patients following stroke in the order of priority Number
Statements
ICF component
A1
Basic self-care problems (dressing, cleaning, bathing, feeding)
Activity and participation
A2
Functional problems (walking, hand functioning)
Activity and participation Body functions and structures
A3 A4 A5
Acquisition of needs, acquiring a Activity and participation place to live, acquisition of goods Body awareness Body functions and structures Interpersonal interactions Activity and participation Not achieving social roles (being a mother, father, education, worker, grandmother, grandfather)
A6
A7
Environmental factors
Psychological/emotional Body functions and problems (losing self-confidence, structures depression, feeling of Activity and participation loneliness)
A8
Sexual problems
A9
Benefit from all the required therapies about the disease
A10
380
Environmental problems (step stool, stairs, elevator)
Economic problems (work and employment, economic needs)
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Items Washing oneself Caring for body parts Toileting Dressing Eating Drinking Looking after one’s health Muscle function Movement function Changing and maintaining body position Carrying, moving and handling object Walking and moving Acquisition of needs
d510 d520 d530 d540 d550 d560 d570 b730–749 b750–b789 d410–429
Body image
b180
General inter personal interactions Relating with strangers Formal relationships Informal social relationships Family relationships Intimate relationships Design, construction and building products and technology of buildings for public and private use Products and technology of land development Psychomotor function
d710–729
Emotional function Basic interpersonal interaction Handling stress and other psychological demands Body functions and structures Sexual function Activity and participation Intimate relationship Environmental factors Social security services systems and policies Heath services, systems and policies Activity and participation Remunerative employment Environmental factors Basic economic transactions
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ICF code
d430–449 d450–469 d610–629
d730 d740 d750 d760 d770 e150–e155
e160 b147 b152 d710 d240 b640 d770 e570 e580 d850 d 860
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Question 1. What are the problems faced by the patients after stroke? Question 2. What does recovery after stroke mean to you? After the questions were asked and the possible response choices in Tables 1 and 2 were presented, subjects were asked to prioritize these response choices. Questionnaires were administered by physiotherapists to all parties involved with the same patient concurrently but in different rooms.
Statistical analysis SPSS v15.0 for windows was used for statistical analysis. Descriptive statistics were to examine the distribution of the demographic data. Continuous variables were expressed as mean+ standard deviation while discreet variables were expressed as percentages and frequencies.
Results Of the 210 participants who were invited to enroll the study, 17 were excluded. Reasons for exclusion were communication problems (n52), inexperienced
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physiotherapist (n53), the presence of an additional neurological disease (n53), or cognitive disorder (n53). Six participants were also excluded when the patient, caregiver, or the physiotherapist did not consent to take part in the study. Final study group comprised of 159 subjects: 53 stroke patients, 53 caregivers and 53 physiotherapists. Demographical data of the subjects are presented in Table 3. When the top three responses given by the subjects were examined, we found that the patients’ first priority was functional abilities such as using the hands and feet while the caregivers and physiotherapists prioritized self-care problems. The top three priorities in Question 1 are presented in Table 4. When the responses were matched with the ICF components, it emerged that caregivers and physiotherapists gave activities and participation the first priority, while the patients cared about the Body functions and Body structures, as well as Activities and participation. The schematic representation of the perspectives of all three parties about problems faced by the patients following stroke is presented in Fig. 3.
Table 2 Question 2, its statements and corresponding ICF components Theme 2 What does post-stroke recovery mean to you? Rank in the order of priority Number B1
B2
B3
B4
Statements Able to move my arm and leg on the affected side
Able to reach the level of transferring independently from bed and from chair at home Being independent outside (by using/not using walking aids) (walking outside, driving a car, using public transport, etc.)
Speaking with others
ICF component Body functions and structures
Activity and participation
Activity and participation Environmental and personal factors
Body functions and structures Activity and participation
B5 B6 B7 B8
Being independent in self-care activities (cleaning, bathing, feeding, etc.) Perform social activities and hobbies despite my problems Able to shop at market and bazaar Able to perform activities required for job and housework
B9
Being in health condition before the disease
B10
Able to make plans about future for me and my family
Activity and participation Activity and participation Activity and participation Activity and participation
Body functions and structures Activity and participation Environmental and personal factors Body functions and structures
Items
ICF code
Muscles of one side of body Muscles tones of one side of body Changing basic body position Transferring oneself Walking Moving around Moving around using equipment Using transportation Driving Products and technology for urban land development Fluency and rhythm of speech functions Speaking Conservation Self-care
b7302 b7352 d410 d420 d450 d455 d465 d470 d475 e1602
b330 d330 d350 d5
Community life Recreation and leisure Acquisition of necessities House work Acquiring, maintaining and terminating a job Remunerative employment All
d910 d920 d620–d629 d630–d649 d 845
Higher-level cognitive functions
b164
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Table 3 Demographical data
Age (years) Sex Level of education
Time since stroke (months) Place of living
Patient (n553)
Caregiver (n553)
Physiotherapist (n553)
60.79+ 16.14 47.2% female 52.8% male 66.7% primary 15.7% high school 15.7% university 17.80+ 24.66 73.6% city 22.6% town 3.8% village
48.84+ 12.11 64% female 36% male
30.22+ 6.22 64% female 36% male
6.70+ 6.37
Professional experience (years)
The most common response to the question ‘‘What does post-stroke recovery mean to you?’’ was ‘‘Being in health condition before the disease’’ among the patients and caregivers and ‘‘Being able to move arm and leg on the affected side’’ among the physiotherapists and expressed their expectation at disorder level. The priorities of the subjects are presented in Table 5. When the responses to Question 2 were matched with ICF components, we noted that physiotherapists gave the priority to body function and body structure, while patients and caregivers gave the priority to activities and participation. The schematic representation of the responses of all three parties about Question 2 is presented in Fig. 4.
Discussion Results of the present study indicated that problems faced by the patients, caregivers, and physiotherapists were perceived under the same ICF domain and that caregivers’ and physiotherapists’ priority was the same and different from that of the patients. With regard to the recovery, healthcare consumers and provider had different expectations and priorities. We believe that the results will provide important evidence to plan the training of the patients and their families and to assess the success of rehabilitation and satisfaction for all parties involved.
The design of the study by Mackenzie et al. is the closest to the present study. In that study, the caregivers of acute stroke patients were asked to rank the problems they faced before and 4–6 weeks after discharge from the hospital according to their priority. Before discharge from the hospital, the caregivers reported problems related to care, help with the activities of daily living, and emotional problems as the most commonly faced problems.14,15 In the present study, problems related to functionality and self-care and psychological problems were the three most common problems though the order of priority was different in three groups. These results indicate that all three parties shared the same perspective about the problems that need to be dealt with, while patients perceived functional status as their most important issue, caregivers, and physiotherapists prioritized basic self-care problems such as eating, dressing, and bathing. In physiotherapy programs where the physiotherapists focus mainly on functionality, it is noteworthy that caregivers are a part of the process. Taking necessary measures for problems related to the care of the patient and initiation of counseling and training as soon as possible would result in active participation of the caregivers in the process, reduced burden introduced by the care, and increased satisfaction. Moore and colleagues reported that caregivers were anxious about the uncertainty in the future
Table 4 The first three priorities expressed by the patients, caregivers, and physiotherapists, in response to the question ‘‘What are the problems faced by the patients after stroke?’’ Priority I II III
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Patients
Caregivers
*Functional problems (walking, using hands) (47.2 %) *Self-care problems (dressing, cleaning, bathing, feeding) (36.5%) *Psychological/emotional problems (losing self-confidence, depression, feeling of loneliness) (8.5%)
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*Self-care problems (dressing, cleaning, bathing, feeding) (48.1%) *Functional problems (walking, using hands) (37.7%) *Psychological/emotional problems (losing self-confidence, depression, feeling of loneliness) (8.0%) *Future anxiety (self-care, economic, loneliness (8.0%)
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Physiotherapists *Self-care problems (dressing, cleaning, bathing, feeding) (49.1%) *Functional problems (walking, using hands) (32.1%) *Psychological/emotional problems (losing self-confidence, depression, feeling of loneliness) (9.4%)
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Figure 3 The perspectives of three groups with regard to the problems faced by the patients following stroke and their corresponding ICF components.
health condition of the patients.11 Similarly, when we asked the caregivers to rank the problems patients face after stroke, they pointed out the anxiety patients had for the future. The even emphasized that the future anxiety was as important as the psychological and emotional problems observed in the patient following stroke. This result suggested us that strategies to deal with problems related to care and future anxiety should be implemented in the rehabilitation programs and highlighted the need that rehabilitation should be executed in a holistic approach. When the literature is reviewed, we noted that ‘‘recovery’’ after stroke invoked different expectations in patients, caregivers, and physiotherapists. Some of the patients and caregivers defined recovery as ‘‘return to pre-stroke life,’’ while others defined it as ‘‘being
able to walk outside independently’’ rather than mobility.6,16–18 Physiotherapists in previous studies described recovery as restoration of movement and accomplishment of basic activities of daily living.9,19–21 In conclusion, physiotherapists having more realistic opinion on recovery and patients having completely different expectations are the common findings of numerous studies.7,22 The results of the present study indicated that, by defining the recovery as returning to pre-stroke state, the expectations of the patients and caregivers were similar to the literature. As opposed to the patients and caregivers, physiotherapists seem to have comprehended that recovery is a process that developing gradually and, therefore, they gave priority to body structure and body function, followed by activity
Table 5 The first three priorities expressed by the patients, caregivers, and physiotherapists, in response to the question ‘‘What does post-stroke recovery mean to you?’’ Priority I II
III
Patient
Caregiver
*Being in health condition before the disease (47.2%) *Able to move my arm and leg on the affected side (18.0%)
*Being in health condition before the disease (35.8) % *Able to move my arm and leg on the affected side (26.0%)
*Being independent in self-care activities (toileting, bathing, feeding, etc.) (16.0%)
*Being independent in self-care activities (toileting, bathing, feeding, etc.)(23.1%)
Physiotherapist *Able to move my arm and leg on the affected side (26.9%) *Being independent in self-care activities (toileting, bathing, feeding, etc.) (23.1%) *Being independent outside (by using/not using walking aids) (walking outside, driving a car, using public transport, etc.) (13.5%)
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Figure 4 Classification by ICF of the responses given to the question “What does post-stroke recovery mean to you?”
and participation and then to environmental factors according to ICF. It is inevitable that the hope for a complete recovery among the patients and caregivers, i.e. the healthcare consumer, would affect the success expected during the rehabilitation process and the level of satisfaction. Rapid return to prestroke state is a high expectation among most of the patients. Therefore, before the commencement of the rehabilitation, patients and caregivers need to be informed about recovery and their expectations need to be rationalized. The fact that we do not have any information as to whether the patients and caregivers received, in the early post-stroke period, any education from appropriate healthcare professionals and, if they did, what the content of this education was is the major limitation of the present study. It is well established that the attitudes of the healthcare professionals regarding educating patients and caregivers in the acute phase change the expectations of the patients and caregivers on recovery.23 Therefore, background settled education and instruction programs based on bio-psycho-social model developed according to their individual approaches and abilities can render the expectations of the groups more realistic and consistent. Based on the results of the present study, in the context of stroke rehabilitation, interdisciplinary education programs to be given to the patients and caregivers/families by the physiotherapists and other 384
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healthcare professionals need to include the following approaches: 1. The problems faced by the patients after stroke are, as perceived by the patients and caregivers, mostly related to body structure and function component. Underlining the fact that the ultimate goal of rehabilitation is to re-establish social participation, patients, and their families should be educated on activity restrictions, problems preventing social participation, and the ways to cope with these problems. 2. Psychological and emotional problems as well as future anxiety are the problems caregivers perceived as most important and, therefore, need to be addressed. 3. Post-stroke recovery is a multistage process that goals are achieved gradually. Problems and factors affecting the recovery should be defined independently for each individual; expectations for recovery time and level of physiotherapists, patients, and caregivers should be consistent and rational. 4. Even though ICF is a classification that deals with health and functionality, it can be used by all parties involved in rehabilitation as a common language in the expression of expectations in the course of rehabilitation and treatment outcomes. 5. Motivations of the patients and caregivers would be higher and the rehabilitation would be more successful if the patients and their families feel that they are in the center of rehabilitation and that their thoughts and opinions are valued. Therefore, learning the kinds of problems patients face and what recovery means
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for them would enable formulation of a personalized rehabilitation program and increase the success of the treatment.
Even though the patients, their caregivers, and physiotherapists share somewhat similar opinion about the problems that needs to be dealt with and the expectations for recovery during post-recovery period, the rank of importance shows variability. We believe that our results would contribute to increases in the success of the rehabilitation and patient satisfaction by defining the problems faced by stroke patients and recovery expectations by associating them with ICF components, focusing on prioritized problems and including the families and caregivers in the rehabilitation process. As a conclusion, the results highlight the fact that healthcare professionals working in the field of stroke need to develop patient-centered, function-focused, interdisciplinary rehabilitation strategies, which take personal and social environments of the patients into consideration.
Disclaimer Statements Contributors All authors contributed equally.
Funding None.
Conflicts of interest The authors, their immediate family, and any research foundation with which they are affiliated have not received any financial payments or other benefits from any commercial entity related to the subject of this article. Also there is no conflict of interest in this study.
Ethics approval The study was approved by the ethics committee of Hacettepe University.
References 1 Duncan PW, Zorowitz R, Bates B, et al. Management of adult stroke rehabilitation care: A clinical practice guideline. Stroke. 2005;36(9):e100–e143. 2 Muren MA, Hu¨tler M, Hooper J. Functional capacity and health-related quality of life in individuals post stroke. Top Stroke Rehabil. 2008;15(1):51–58. 3 Perry SB, Marchetti GF, Wagner S, Wilton W. Predicting caregiver assistance required for sit-to-stand following rehabilitation for acute stroke. J Neurol Phys Ther. 2006;30(1):2–11.
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4 Mackenzie A, Perry L, Lockhart E, Cottee M, Cloud G, Mann H. Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disabil Rehabil. 2007;29(2): 111–121. 5 King RB, Hartke RJ, Houle TT. Patterns of relationships between background characteristics, coping, and stroke caregiver outcomes. Top Stroke Rehabil. 2010;17(4):308–317. ¨ zer S, Yılmaz O ¨ , Du¨ger T, Kılınc¸ M. 6 Aksu Yıldırım S, O Kronik no¨rolojik hastalıg˘ı olan kis¸ilere bakım verenlerde depresyon, anksiyete ve yas¸am kalitesi. J Med Sci. 2009; 29(6):1535–1542. 7 Wiles R, Ashburn A, Payne S, Murphy C. Patients’ expectations of recovery following stroke: a qualitative study. Disabil Rehabil. 2002;24(16):841–850. 8 World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization; 2004. 9 Hafsteinsdottir TB, Grypdonck M. Being a stroke patient: a review of the literature. J Adv Nurs. 1997;26(3):580–588. 10 N, Mackenzie A, Cloud GC, Wilson N. Informal primary carers of stroke survivors living at home — challenges, satisfactions and coping: a systematic review of qualitative studies. Disabil Rehabil. 2009;31(5):337–351. 11 Moore LW, Maiocco G, Schmidt SM, Guo L, Estes J. Perspectives of caregivers of stroke survivors: implications for nursing. Medsurg Nurse. 2002;11(6):289–295. 12 Dowswell G, Dowswell T, Lawler J, Green J, Young J. Patients’ and caregivers’ expectations and experiences of a physiotherapy intervention 1 year following stroke: a qualitative study. J Eval Clin Pract. 2002;8(3):361–365. 13 Dalvandı A, Heıkkıla K, Maddah SSB, Khankeh HR, Ekman SL. Life experiences after stroke among Iranian stroke survivors. Int Nurs Rev. 2010;57(2):247–253. 14 Lennon S, Ashburnoe A. The Bobath concept in stroke rehabilitation: a focus group study of the experienced physiotherapists’ perspective. Disabil Rehabil. 2000;22(15):665–674. 15 O’Connell B, Hanna B, Penney W, Pearce J, Owen M, Warelow P. Recovery after stroke: a qualitative perspective. J Qual Clin Pract. 2001;21(4):120–125. 16 Wohlin Wottrich A, Astrom K, Lo¨fgren M. On parallel tracks: newly home from hospital — people with stroke describe their expectations. Disabil Rehabil. 2012;34(14):1218–1022. 17 Green TL, King KM. Experiences of male patients and wifecaregivers in the first year post-discharge following minor stroke: a descriptive qualitative study. Int J Nurs Stud. 2009; 46(9):1194–1200. 18 Tyson S, Turner G. The process of stroke rehabilitation: what happens and why. Clin Rehabil. 1999;13(4):322–332. 19 Tyson S, Turner G. Discharge and follow-up for people with stroke: what happens and why. Clin Rehabil. 2000;14(4): 381–392. 20 Pound P, Burry M, Gompertz P, Ebrahim S. Views of survivors of stroke on benefits of physiotherapy. Qual Health Care. 1994; 3(2):69–74. 21 Hoffman J. Nothing can be done: social dimensions of the treatment of stroke patients in a general hospital. Urban Life Culture. 1974; (3):50–70. 22 Wiles R, Ashburn A, Payne S, Murphy C. Discharge from physiotherapy following stroke: the management of disappointment. Soc Sci Med. 2004;59(6):1263–1273. 23 Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R. Randomized controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke. 1990;30(12):2585–2591.
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Fatih University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey, Baskent University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey, 3Hacettepe University, Department of Physical Therapy and Rehabilitation, Ankara, Turkey, 4 Inonu University, School of Physiotherapy and Rehabilitation, Malatya, Turkey, 5Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey 2
Background: The similarities or differences of the threesome (physiotherapists, patients, and caregivers) thought about the process of stroke rehabilitation can play a key role in the success of rehabilitation. Objective: The aim of this qualitative study was to investigate the perspectives of the threesome, with regard to the two themes of the study: (1) What are the problems faced by the patients after stroke?; and (2) What does recovery after stroke mean to you? Methods: The qualitative questions and possible answers were prepared by four physiotherapists. The answers were matched to International Classification of Functioning (ICF) components. Seventy patients who were having treatment as in-patient rehabilitation centers, their caregivers, and physiotherapists were invited to the study. After the questions were asked and the possible response choices were presented, subjects were asked to prioritize these response choices. Results: One hundred and fifty-nine subjects, including 53 patients, 53 caregivers, and 53 physiotherapists, were included to the study. When the theme 1 were examined, we found that the patients’ first priority was functional abilities (ICF: body function and structure) such as using the hands and feet while the caregivers and physiotherapists prioritized self-care problems (ICF: activity and participation). The most common response to the theme 2 was ‘‘being in same health condition before the disease’’ (ICF: activity and participation) among the patients and caregivers and ‘‘being able to move arm and leg on the affected side’’ (body function and structure) among the physiotherapists. Conclusion: As a conclusion, problems faced by the patients, caregivers, and physiotherapists were perceived under the same ICF domain and that caregivers’ and physiotherapists’ priorities were the same. Keywords: Stroke rehabilitation, International Classification of Functioning (ICF), Patient’s and caregiver’s priorities, Physiotherapist
Introduction Each year, over 15 million people suffer from stroke worldwide and some 80% of these patients have to endure a life of hemiparesis.1 Many of the patients experience permanent problems after being discharged from the hospital. They have suffered from muscle weakness, balance disorder, cognitive impairment, immobility, and dependence in activities of daily living. The patients
*Correspondence to: M. Kılınc, Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Ankara, Turkey. Email: [email protected] ß W. S. Maney & Son Ltd 2010, 2015 DOI 10.1179/1074935714Z.0000000042
referred to physiotherapy and rehabilitation programs to deal with these problems.1,2 Rehabilitation is an active, repetitive, and didactic ‘‘problem solving’’ method aiming to alleviate the patient’s disability.3–5 Rehabilitation is a team effort. Three parties or groups have to work together during the rehabilitation stage of the stroke. First party comprises the patients, who suffer from functional deficits. The second party is the caregiver/family member who stays by the patient in the course of the changes in life and the third party is the physiotherapist who plays a key role in the rehabilitation process. Topics in Stroke Rehabilitation
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Studies in the literature show that the expectations of the patients and the physiotherapists are different. Patient’s expectations tend to be very high in the first few weeks of stroke in terms of recovery, but this expectation is replaced by frustration as time goes by. Expectation of a full recovery is believed to be a coping mechanism of the patient and the caregiver.6,7 Previous studies defined post-stroke recovery as improvement in physical functions. In recent years, many healthcare professionals lent support to the opinion that post-stroke recovery did not depend solely on functional abilities, that personal and environmental components were also important, and that the level of independence in activities of daily living and social participation need to be taken into account in the recovery.7 Therefore, examining the problems encountered by the patient following stroke and recovery in the context of biopsycho-social model of International Classification of Function (ICF), which incorporate body functions, activity, and participation, is the ideal approach for rehabilitation (Fig. 1). Bio-psychosocial model of disability according to ICF.8 Numerous studies which investigated the problems faced by the patients, caregivers, as well as healthcare professionals following stroke and their attitude towards treatment exist in the literature.9–13
The results of these studies are important in formulating rehabilitation strategies and assessing the outcome of rehabilitation. However, these studies include the perspectives of one or two groups at most. To the best of our knowledge, there is not a study that assessed the perspectives of all three parties of rehabilitation, namely, the patient, caregiver, and the physiotherapist. Furthermore, when the results of the previous studies were reviewed, we found the results difficult to interpret due to the absence of a common language or uniform terminology in the expression of the problems following stroke, functional level, and recovery. Two questions have been selected in the present study: 1. What are the problems faced by the patients after stroke? 2. What does recovery after stroke mean to you?
The aim of the study was to address and compare the perspectives of the patients and caregivers, the healthcare consumers, the physiotherapists, and the healthcare provider, with regard to the two questions of the study. This study, to the best of our knowledge, is the first study that examined the perspectives of the stroke patients, their caregivers, and physiotherapists concurrently in a bio-psycho-social approach, providing a common language to describe health and functionality.
Figure 1 Bio-psycho-social model of health according to ICF(12).
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Methods Participants The study which was carried out from January 2013 to December 2013 was a qualitative descriptive design. The study was conducted on patients from three outpatient physiotherapy clinics in Ankara. All the patients, their caregivers, and their physiotherapists who fulfilled the inclusion criteria were included to the study. In the present study, three groups’ perspectives were assessed: 1. stroke patients; 2. caregivers of stroke patients; 3. physiotherapists of stroke patients. Same questions were asked to all groups. Seventy patients who were having treatment as three inpatient rehabilitation centers, caregivers who were looking after these patient (n570), and physiotherapist who work treating these patients (n570) were invited to participate in the study. These three groups consisted a triad. The data collection and assessment procedure is shown in Fig. 2.
Interview questions The qualitative questions to be asked to the subjects and possible answers were prepared by four physiotherapists with a mean 20 years of professional experience. Following a thorough literature review,
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a question bank was constructed that included items to probe the perspectives of the patients, caregivers, and physiotherapists. The choices were selected from possible responses which all groups gave priority to. The understandability of the questions and the response choices were tested before the commencement of the study. The answers were matched to ICF components. Answers of the questions and corresponding ICF components are presented in Tables 1 and 2. Once the questions and response choices were established, the questionnaire was administered by four physiotherapists. Physiotherapists who participated in the preparation of the questionnaire did not participate in the administration of the questionnaire.
Inclusion criteria 1. patients: subacute and chronic stroke patients who were attending post-stroke rehabilitation program; 2. caregiver: primary person who was 18 years of age and over, only family caregiver, lived with the patient, and provided care for at least 2 hours a day. 3. physiotherapist: physiotherapists with at least 2 years of experience in stroke rehabilitation.
Exclusion criteria 1. patients with cognitive impairment, dementia and acute brain lesion that cause consciousness problems (standardized mini-mental state exam score v23);
Totally 210 (70*3) participant 70 Patients, 70 caregivers, 70 physiotherapists
Number of participants who included to the study
Excluded (n:17*3 = 51)
(53*3 = 109)
Comminication problems (n = 2*3) Additional neurological impairment (n = 3*3) Less than 2 years experience (n = 3*3) Cognitive impairment (n = 3*3) Anyone (patient, caregiver or physiotherapists) who did not accept to participate the study (n = 6*3)
53 patients 53 Caregivers 53 Physiotherapists Figure 2 Data collection and assessment procedure.
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2. patients with speech disorder; 3. patients with neurological (other than stroke) or sensory disorder, systemic and musculo-skeletal diseases; 4. patients who suffered from multiple episodes of stroke; 5. we asked the physiotherapists who treated more than one patient to consider particular patient who was a subject in the study while answering the questionnaire; 6. if either one of the three related parties (patient, his/ her caregiver, his/her physiotherapist) was unavailable, the remaining parties were also excluded.
Research Ethics Committee. Informed consent was obtained from patients, caregivers, and physiotherapists.
Ethical approval was obtained from the Hacettepe University Medical, Surgical and Pharmaceutical
The stroke patients, their caregivers, and physiotherapists were asked the following questions:
Assessment procedure Patient, caregiver and physiotherapist demographics were recorded. Demographic characteristics included: 1. patients: age, sex, time since stroke and affected side; 2. physiotherapist: age, sex, duration of professional experience; 3. caregiver; age, sex, duration of daily care.
Table 1 Question 1, its statements, and corresponding ICF components Question 1– Rank the problems faced by the patients following stroke in the order of priority Number
Statements
ICF component
A1
Basic self-care problems (dressing, cleaning, bathing, feeding)
Activity and participation
A2
Functional problems (walking, hand functioning)
Activity and participation Body functions and structures
A3 A4 A5
Acquisition of needs, acquiring a Activity and participation place to live, acquisition of goods Body awareness Body functions and structures Interpersonal interactions Activity and participation Not achieving social roles (being a mother, father, education, worker, grandmother, grandfather)
A6
A7
Environmental factors
Psychological/emotional Body functions and problems (losing self-confidence, structures depression, feeling of Activity and participation loneliness)
A8
Sexual problems
A9
Benefit from all the required therapies about the disease
A10
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Environmental problems (step stool, stairs, elevator)
Economic problems (work and employment, economic needs)
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Items Washing oneself Caring for body parts Toileting Dressing Eating Drinking Looking after one’s health Muscle function Movement function Changing and maintaining body position Carrying, moving and handling object Walking and moving Acquisition of needs
d510 d520 d530 d540 d550 d560 d570 b730–749 b750–b789 d410–429
Body image
b180
General inter personal interactions Relating with strangers Formal relationships Informal social relationships Family relationships Intimate relationships Design, construction and building products and technology of buildings for public and private use Products and technology of land development Psychomotor function
d710–729
Emotional function Basic interpersonal interaction Handling stress and other psychological demands Body functions and structures Sexual function Activity and participation Intimate relationship Environmental factors Social security services systems and policies Heath services, systems and policies Activity and participation Remunerative employment Environmental factors Basic economic transactions
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ICF code
d430–449 d450–469 d610–629
d730 d740 d750 d760 d770 e150–e155
e160 b147 b152 d710 d240 b640 d770 e570 e580 d850 d 860
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Question 1. What are the problems faced by the patients after stroke? Question 2. What does recovery after stroke mean to you? After the questions were asked and the possible response choices in Tables 1 and 2 were presented, subjects were asked to prioritize these response choices. Questionnaires were administered by physiotherapists to all parties involved with the same patient concurrently but in different rooms.
Statistical analysis SPSS v15.0 for windows was used for statistical analysis. Descriptive statistics were to examine the distribution of the demographic data. Continuous variables were expressed as mean+ standard deviation while discreet variables were expressed as percentages and frequencies.
Results Of the 210 participants who were invited to enroll the study, 17 were excluded. Reasons for exclusion were communication problems (n52), inexperienced
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physiotherapist (n53), the presence of an additional neurological disease (n53), or cognitive disorder (n53). Six participants were also excluded when the patient, caregiver, or the physiotherapist did not consent to take part in the study. Final study group comprised of 159 subjects: 53 stroke patients, 53 caregivers and 53 physiotherapists. Demographical data of the subjects are presented in Table 3. When the top three responses given by the subjects were examined, we found that the patients’ first priority was functional abilities such as using the hands and feet while the caregivers and physiotherapists prioritized self-care problems. The top three priorities in Question 1 are presented in Table 4. When the responses were matched with the ICF components, it emerged that caregivers and physiotherapists gave activities and participation the first priority, while the patients cared about the Body functions and Body structures, as well as Activities and participation. The schematic representation of the perspectives of all three parties about problems faced by the patients following stroke is presented in Fig. 3.
Table 2 Question 2, its statements and corresponding ICF components Theme 2 What does post-stroke recovery mean to you? Rank in the order of priority Number B1
B2
B3
B4
Statements Able to move my arm and leg on the affected side
Able to reach the level of transferring independently from bed and from chair at home Being independent outside (by using/not using walking aids) (walking outside, driving a car, using public transport, etc.)
Speaking with others
ICF component Body functions and structures
Activity and participation
Activity and participation Environmental and personal factors
Body functions and structures Activity and participation
B5 B6 B7 B8
Being independent in self-care activities (cleaning, bathing, feeding, etc.) Perform social activities and hobbies despite my problems Able to shop at market and bazaar Able to perform activities required for job and housework
B9
Being in health condition before the disease
B10
Able to make plans about future for me and my family
Activity and participation Activity and participation Activity and participation Activity and participation
Body functions and structures Activity and participation Environmental and personal factors Body functions and structures
Items
ICF code
Muscles of one side of body Muscles tones of one side of body Changing basic body position Transferring oneself Walking Moving around Moving around using equipment Using transportation Driving Products and technology for urban land development Fluency and rhythm of speech functions Speaking Conservation Self-care
b7302 b7352 d410 d420 d450 d455 d465 d470 d475 e1602
b330 d330 d350 d5
Community life Recreation and leisure Acquisition of necessities House work Acquiring, maintaining and terminating a job Remunerative employment All
d910 d920 d620–d629 d630–d649 d 845
Higher-level cognitive functions
b164
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Table 3 Demographical data
Age (years) Sex Level of education
Time since stroke (months) Place of living
Patient (n553)
Caregiver (n553)
Physiotherapist (n553)
60.79+ 16.14 47.2% female 52.8% male 66.7% primary 15.7% high school 15.7% university 17.80+ 24.66 73.6% city 22.6% town 3.8% village
48.84+ 12.11 64% female 36% male
30.22+ 6.22 64% female 36% male
6.70+ 6.37
Professional experience (years)
The most common response to the question ‘‘What does post-stroke recovery mean to you?’’ was ‘‘Being in health condition before the disease’’ among the patients and caregivers and ‘‘Being able to move arm and leg on the affected side’’ among the physiotherapists and expressed their expectation at disorder level. The priorities of the subjects are presented in Table 5. When the responses to Question 2 were matched with ICF components, we noted that physiotherapists gave the priority to body function and body structure, while patients and caregivers gave the priority to activities and participation. The schematic representation of the responses of all three parties about Question 2 is presented in Fig. 4.
Discussion Results of the present study indicated that problems faced by the patients, caregivers, and physiotherapists were perceived under the same ICF domain and that caregivers’ and physiotherapists’ priority was the same and different from that of the patients. With regard to the recovery, healthcare consumers and provider had different expectations and priorities. We believe that the results will provide important evidence to plan the training of the patients and their families and to assess the success of rehabilitation and satisfaction for all parties involved.
The design of the study by Mackenzie et al. is the closest to the present study. In that study, the caregivers of acute stroke patients were asked to rank the problems they faced before and 4–6 weeks after discharge from the hospital according to their priority. Before discharge from the hospital, the caregivers reported problems related to care, help with the activities of daily living, and emotional problems as the most commonly faced problems.14,15 In the present study, problems related to functionality and self-care and psychological problems were the three most common problems though the order of priority was different in three groups. These results indicate that all three parties shared the same perspective about the problems that need to be dealt with, while patients perceived functional status as their most important issue, caregivers, and physiotherapists prioritized basic self-care problems such as eating, dressing, and bathing. In physiotherapy programs where the physiotherapists focus mainly on functionality, it is noteworthy that caregivers are a part of the process. Taking necessary measures for problems related to the care of the patient and initiation of counseling and training as soon as possible would result in active participation of the caregivers in the process, reduced burden introduced by the care, and increased satisfaction. Moore and colleagues reported that caregivers were anxious about the uncertainty in the future
Table 4 The first three priorities expressed by the patients, caregivers, and physiotherapists, in response to the question ‘‘What are the problems faced by the patients after stroke?’’ Priority I II III
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Patients
Caregivers
*Functional problems (walking, using hands) (47.2 %) *Self-care problems (dressing, cleaning, bathing, feeding) (36.5%) *Psychological/emotional problems (losing self-confidence, depression, feeling of loneliness) (8.5%)
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*Self-care problems (dressing, cleaning, bathing, feeding) (48.1%) *Functional problems (walking, using hands) (37.7%) *Psychological/emotional problems (losing self-confidence, depression, feeling of loneliness) (8.0%) *Future anxiety (self-care, economic, loneliness (8.0%)
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Physiotherapists *Self-care problems (dressing, cleaning, bathing, feeding) (49.1%) *Functional problems (walking, using hands) (32.1%) *Psychological/emotional problems (losing self-confidence, depression, feeling of loneliness) (9.4%)
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Figure 3 The perspectives of three groups with regard to the problems faced by the patients following stroke and their corresponding ICF components.
health condition of the patients.11 Similarly, when we asked the caregivers to rank the problems patients face after stroke, they pointed out the anxiety patients had for the future. The even emphasized that the future anxiety was as important as the psychological and emotional problems observed in the patient following stroke. This result suggested us that strategies to deal with problems related to care and future anxiety should be implemented in the rehabilitation programs and highlighted the need that rehabilitation should be executed in a holistic approach. When the literature is reviewed, we noted that ‘‘recovery’’ after stroke invoked different expectations in patients, caregivers, and physiotherapists. Some of the patients and caregivers defined recovery as ‘‘return to pre-stroke life,’’ while others defined it as ‘‘being
able to walk outside independently’’ rather than mobility.6,16–18 Physiotherapists in previous studies described recovery as restoration of movement and accomplishment of basic activities of daily living.9,19–21 In conclusion, physiotherapists having more realistic opinion on recovery and patients having completely different expectations are the common findings of numerous studies.7,22 The results of the present study indicated that, by defining the recovery as returning to pre-stroke state, the expectations of the patients and caregivers were similar to the literature. As opposed to the patients and caregivers, physiotherapists seem to have comprehended that recovery is a process that developing gradually and, therefore, they gave priority to body structure and body function, followed by activity
Table 5 The first three priorities expressed by the patients, caregivers, and physiotherapists, in response to the question ‘‘What does post-stroke recovery mean to you?’’ Priority I II
III
Patient
Caregiver
*Being in health condition before the disease (47.2%) *Able to move my arm and leg on the affected side (18.0%)
*Being in health condition before the disease (35.8) % *Able to move my arm and leg on the affected side (26.0%)
*Being independent in self-care activities (toileting, bathing, feeding, etc.) (16.0%)
*Being independent in self-care activities (toileting, bathing, feeding, etc.)(23.1%)
Physiotherapist *Able to move my arm and leg on the affected side (26.9%) *Being independent in self-care activities (toileting, bathing, feeding, etc.) (23.1%) *Being independent outside (by using/not using walking aids) (walking outside, driving a car, using public transport, etc.) (13.5%)
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Figure 4 Classification by ICF of the responses given to the question “What does post-stroke recovery mean to you?”
and participation and then to environmental factors according to ICF. It is inevitable that the hope for a complete recovery among the patients and caregivers, i.e. the healthcare consumer, would affect the success expected during the rehabilitation process and the level of satisfaction. Rapid return to prestroke state is a high expectation among most of the patients. Therefore, before the commencement of the rehabilitation, patients and caregivers need to be informed about recovery and their expectations need to be rationalized. The fact that we do not have any information as to whether the patients and caregivers received, in the early post-stroke period, any education from appropriate healthcare professionals and, if they did, what the content of this education was is the major limitation of the present study. It is well established that the attitudes of the healthcare professionals regarding educating patients and caregivers in the acute phase change the expectations of the patients and caregivers on recovery.23 Therefore, background settled education and instruction programs based on bio-psycho-social model developed according to their individual approaches and abilities can render the expectations of the groups more realistic and consistent. Based on the results of the present study, in the context of stroke rehabilitation, interdisciplinary education programs to be given to the patients and caregivers/families by the physiotherapists and other 384
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healthcare professionals need to include the following approaches: 1. The problems faced by the patients after stroke are, as perceived by the patients and caregivers, mostly related to body structure and function component. Underlining the fact that the ultimate goal of rehabilitation is to re-establish social participation, patients, and their families should be educated on activity restrictions, problems preventing social participation, and the ways to cope with these problems. 2. Psychological and emotional problems as well as future anxiety are the problems caregivers perceived as most important and, therefore, need to be addressed. 3. Post-stroke recovery is a multistage process that goals are achieved gradually. Problems and factors affecting the recovery should be defined independently for each individual; expectations for recovery time and level of physiotherapists, patients, and caregivers should be consistent and rational. 4. Even though ICF is a classification that deals with health and functionality, it can be used by all parties involved in rehabilitation as a common language in the expression of expectations in the course of rehabilitation and treatment outcomes. 5. Motivations of the patients and caregivers would be higher and the rehabilitation would be more successful if the patients and their families feel that they are in the center of rehabilitation and that their thoughts and opinions are valued. Therefore, learning the kinds of problems patients face and what recovery means
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for them would enable formulation of a personalized rehabilitation program and increase the success of the treatment.
Even though the patients, their caregivers, and physiotherapists share somewhat similar opinion about the problems that needs to be dealt with and the expectations for recovery during post-recovery period, the rank of importance shows variability. We believe that our results would contribute to increases in the success of the rehabilitation and patient satisfaction by defining the problems faced by stroke patients and recovery expectations by associating them with ICF components, focusing on prioritized problems and including the families and caregivers in the rehabilitation process. As a conclusion, the results highlight the fact that healthcare professionals working in the field of stroke need to develop patient-centered, function-focused, interdisciplinary rehabilitation strategies, which take personal and social environments of the patients into consideration.
Disclaimer Statements Contributors All authors contributed equally.
Funding None.
Conflicts of interest The authors, their immediate family, and any research foundation with which they are affiliated have not received any financial payments or other benefits from any commercial entity related to the subject of this article. Also there is no conflict of interest in this study.
Ethics approval The study was approved by the ethics committee of Hacettepe University.
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