Stroke survivors are discharged home before they are functionally independent and return home with activity limitations that would not be manageable without a caregiver.
To determine stroke survivors’ levels of community reintegration, quality of life (QOL), satisfaction with the physiotherapy services and the level of caregiver strain at community health centres within the Johannesburg area.
This was a cross-sectional study using the following outcome measures: Maleka Stroke Community Reintegration Measure, Stroke-specific quality of life scale, Caregiver strain index and Physical therapy patient satisfaction questionnaire.
A total of 108 stroke survivors and 45 caregivers participated in this study. The average age of the stroke survivors was 54 years (standard deviation = 12.73) and 58% (
Most stroke survivors are reintegrated into their communities except in the areas of work and education and have poor QOL and most of their caregivers are strained; however, they are satisfied with physiotherapy services.
There are limited statistics specifically focused on the prevalence of stroke in South Africa; however, Thorogood et al. (
Stroke may result in motor, sensory, perceptual or cognitive deficits. These deficits, in addition to environmental and personal factors, lead to disability, hindering functional capability. Disability in the context of this study is based on the International Classification of Functioning, Disability and Health model and refers to the inability to function in multiple life areas such as walking, taking a bath, working, going to school or work, accessing social services – it is seen as a result of an interaction between a person and their environmental and personal factors (WHO
In all, 39% to 65% of stroke survivors report problems with activity limitations and participation restrictions that are related to their community reintegration (Pang, Eng & Miller
Despite the fact that stroke survivors still have impairments at discharge, in a study done in Washington it was shown that most of them still get discharged home with no post-discharge rehabilitation services (Edwards et al.
To ensure that stroke survivors achieve community reintegration, they have to be discharged with a plan for continued rehabilitation for them to reach their maximum capacity. Rehabilitation in most stroke rehabilitation settings in South Africa, including Johannesburg, can take place in various settings such as hospital outpatient department, community health centre or clinic rehabilitation department and in the patient’s home (Rhoda, Mpofu & DeWeerdt
Some stroke survivors do receive rehabilitation services at the CHCs but a clear view on their satisfaction with services provided has not emerged. The significance of patient satisfaction is that patients are more likely to adhere to exercise programmes or recommended activities when they are satisfied with the physiotherapy service (Hush, Cameron & Mackey
Literature on the levels of community reintegration of stroke survivors living in the Johannesburg areas and their satisfaction with physiotherapy services received has not been established. This led to the researchers to conduct this study with the following objectives to: (1) determine the level of community reintegration of stroke survivors in the Johannesburg areas, (2) establish the stroke survivors’ satisfaction with physiotherapy services received at the community health centres within the Johannesburg area, (3) establish the QOL of these stroke survivors, (4) establish the level of strain experienced by their caregivers, (5) establish and determine the relationship between community reintegration and caregiver strain, QOL and satisfaction with physiotherapy services.
This study was a quantitative, cross-sectional study. Stroke survivors were recruited from four community health centres. These four centres are community health centres that offered physiotherapy as part of their rehabilitation service in areas around Johannesburg at the time of the study. The sample size was based on the combined average monthly population of stroke survivors seen at these four health centres over 3 months which was 150. According to Bartlett, Kotrlik and Higgins (
Stroke survivors were included if they met the following criteria: were aged more than 18 years, were with or without a caregiver, receiving physiotherapy services as an outpatient or on a home visit basis from any of the study sites, able to give verbal or written consent to take part in this study, had a stroke for more than 6 months but not more than 4 years (most improvements after stroke happen within the first 6 months and stroke survivors return to work up to 2 years after stroke) (Duff, Ntsiea & Mudzi
The Maleka Stroke Community Reintegration Measure (MSCRIM) was used to assess community reintegration. It has an urban and rural version, but for the purpose of this study, the urban version was used. This measure was found to be reliable and valid for stroke survivors in the urban townships of Johannesburg. The urban version has 40 items that are spread over the following six domains: ADLs and self-care, Social interaction and relationship, Home and family responsibilities, Social interaction, Extended family responsibilities and Work and education. The urban version of the MSCRIM is scored out of 112 by the researcher and converted to a percentage with a higher percentage score implying a higher level of community reintegration (Maleka
The Caregiver strain index (CSI) was used to measure the subjective caregiver strain. It consists of 13 yes/no items which cover employment, finance, physical, social and time-related matters (Sullivan
QOL was measured using the Stroke-specific quality of life scale (SSQOL), which has the following 12 domains: energy, family, roles, language, mobility, mood, personality, self-care, social roles, thinking, upper extremity function, vision and work/productivity. Higher scores indicate better function. It was chosen for its convenience of having one score, which would allow for simplified correlations between the SSQOL and MSCRIM. The SSQOL was found to be a valid and reliable measure of health-related QOL, has good internal consistency (α = 0.81–0.94), construct validity and responsiveness to change for the 12 subscales (Lin et al.
Patient satisfaction with physiotherapy services was measured using the Physical therapy patient satisfaction questionnaire (PTPSQ), which comprises 26 points as follows: first 6 asking about demographic data as well as site of injury and the other 20 questions relating to satisfaction with the physiotherapy service offered. High total scores are indicative of higher levels of patient satisfaction with the physiotherapy service they received. The PTPSQ has a Cronbach α coefficient of 0.99. The questionnaire was shown to yield reliable measurements as well as have content, construct and concurrent validity (Goldstein, Elliot & Guccione
Demographic data sheet, which was developed just for this study, was also used to capture information such as gender, physical address, race, stroke survivor’s currents occupation, date of administration of the questionnaire, date of birth, age, marital status, whether a caregiver is present, level of education, side of the body affected by stroke and date of stroke.
Files at each clinic were checked regularly for stroke participants who met the criteria for inclusion in this study by the physiotherapists working at each clinic. Patients who did not meet the inclusion criteria of this study also received rehabilitation services. Participants who met inclusion criteria were contacted telephonically or through the weekly stroke groups to set appointments at the clinic. Home visits were done where the participants could not make it to the clinic. Consent was obtained from participants who met the inclusion criteria and demographic data sheet was completed by all study participants followed by the MSCRIM and SSQOL. Caregivers were assessed using the CSI. The PTPSQ was administered for each participant to determine the satisfaction with the physiotherapy services. All these were taken at once. Data collection was done as the patients who met the inclusion criteria became available until the minimum sample size was attained. Total data collection period was 12 months.
Descriptive statistics were used and presented as frequencies, percentages, means and standard deviations (SDs). The data for the PTPSQ were skewed and thus median scores and interquartile ranges were calculated. The data from the MSCRIM were skewed and therefore Spearman’s coefficient was used to establish correlations between community reintegration and caregiver strain, QOL and satisfaction with physiotherapy services.
One hundred and eight participants met the inclusion criteria and they were all recruited and they all agreed to participate in this study. Forty-two percent (
The mean age of stroke survivors was 54 years (SD = 12.73). The youngest participant was 20 years old and the oldest was 79 years old. Fifty-seven participants came from Alexandra township, 2 from Diepsloot, 8 from Mofolo, 19 from Hillbrow and 22 from Chiawelo (
Demographic information of the stroke survivors (
Participant characteristics | |
---|---|
Gender | |
Male | 48 (44) |
Female | 60 (56) |
Race | |
Black | 100 (93) |
Coloured | 3 (2.7) |
Asian | 4 (3.7) |
Other | 1 (0.6) |
Marital status | |
Single | 37 (34.3) |
Married | 55 (50.9) |
Divorced | 5 (4.6) |
Widow(er) | 11 (10.2) |
Employment status | |
Employed | 32 |
Unemployed | 59 (55) |
Pensioner | 31 (28) |
Education | |
No education | 8 (7.4) |
Completed primary school | 8 (7.4) |
High school without matric | 71 (65.7) |
Matriculated | 15 (13.9) |
Tertiary education | 6 (5.6) |
Affected side | |
Left | 57 (53) |
Right | 51 (47) |
Results of the level of stroke survivors’ level of community reintegration are presented in
Level of stroke survivors’ community reintegration (Maleka Stroke Community Reintegration Measure scores).
Level of integration | MSCRIM | |
---|---|---|
No integration | 0%–40% | 23 (21.3) |
Minimal integration | 41%–59% | 23 (21.3) |
Moderate integration | 60%–79% | 32 (29.6) |
Full integration | 80% and above | 30 (27.8) |
Maleka Stroke Community Reintegration Measure domain scores (
Domain (total domain score) | Mean ± SD |
---|---|
Activities of daily living and self-care (48) | 36 ± 11.9 |
Social interaction and relationship (20) | 10 ± 5.2 |
Home/family responsibilities and appearance (19) | 9 ± 6.5 |
Social interactions (13) | 9 ± 2.5 |
Extended family responsibilities (6) | 2 ± 1.4 |
Work and education (6) | 2 ± 2.3 |
SD, standard deviation.
The mean score for patient satisfaction with physiotherapy was 92% (SD = 9.17).
The PTPSQ scores are presented in
Physiotherapy-specific patient satisfaction questionnaire individual question scores.
Question (total score: 5 for each question) | Median (IQR) |
---|---|
My privacy was respected | 5 (5 to 5) |
Physical therapist was courteous | 5 (5 to 5) |
Staff members were courteous | 5 (4 to 5) |
Clinic scheduled appointments at convenient times | 5 (4 to 5) |
Satisfied with treatment by physical therapist | 5 (5 to 5) |
My first physiotherapy appointment was organised quickly | 5 (4 to 5) |
Easy to schedule visits after my first appointment | 5 (4 to 5) |
I was seen promptly when I arrived for treatment | 5 (4 to 5) |
The location of the facility was convenient for me | 5 (4 to 5) |
My bills were accurate | 0 (0 to 0) |
I was satisfied with the services offered by my physical therapist | 5 (4 to 5) |
Parking was available for me | 0 (0 to 0) |
The physiotherapist understood my condition | 5 (5 to 5) |
The instructions my physiotherapist gave me were helpful | 5 (4 to 5) |
I was satisfied with the overall quality of my physiotherapy care | 5 (4 to 5) |
I would recommend this facility to my family or friends | 5 (5 to 5) |
I would return to this facility if I required physiotherapy in the future | 5 (4 to 5) |
The cost of physiotherapy was reasonable | 0 (0 to 0) |
If I had to, I would pay for these physiotherapy services myself | 5 (2.75 to 5) |
Overall, I was satisfied with my experience with physiotherapy | 5 (5 to 5) |
IQR, Interquartile range.
The mean total for the SSQOL for all 108 stroke survivors in this study was 157 out of 245 (SD = 23.16) with a highest score of 235 and the lowest score of 54 out of 245. Mean scores for the SSQOL domains are presented in
Stroke-specific quality of life scale domain scores (
Domain | Mean ± SD | Score (%) |
---|---|---|
Energy (15) | 8 ± 4.41 | 53 |
Family role (15) | 9 ± 4.22 | 60 |
Language (25) | 19 ± 6.85 | 76 |
Mobility (30) | 18 ± 8.56 | 60 |
Mood (25) | 15 ± 7.05 | 60 |
Personality (15) | 9 ± 4.1 | 60 |
Self-care (25) | 16 ± 7.74 | 64 |
Social roles (25) | 14 ± 6.98 | 56 |
Thinking (15) | 11 ± 3.93 | 73 |
Upper extremity function (25) | 16 ± 7.34 | 64 |
Vision (15) | 12 ± 3.95 | 80 |
Work/productivity (15) | 9 ± 4.77 | 60 |
SD, standard deviation.
Twenty five (55%) caregivers had a CSI of score ≥7 meaning that they were strained and 20 (45%) had a score <7 meaning that they were not strained. The numbers of caregivers who replied ‘yes’ and ‘no’ to any of the domains are shown in
Caregiver strain index domain scores (
Domain | Yes |
No |
---|---|---|
Caregiver experiences sleep disturbance | 10 (22) | 35 (78) |
It is an inconvenience | 19 (42) | 26 (58) |
It is a physical strain | 21 (47) | 24 (53) |
It is confining | 19 (42) | 26 (58) |
There have been family adjustments | 24 (53) | 21 (47) |
There have been changes in personal plans | 21 (47) | 24 (53) |
There have been other demands on my time | 20 (44) | 25 (56) |
There have been emotional adjustments | 20 (44) | 25 (56) |
Some behaviour is upsetting | 14 (31) | 31 (69) |
It is upsetting to find xxxx has changed so much from his/her former self | 21 (47) | 24 (53) |
There have been work adjustments | 10 (22) | 35 (78) |
It is a financial strain | 17 (38) | 28 (62) |
Feeling completely overwhelmed | 14 (31) | 31 (69) |
The results of correlations between MSCRIM and CSI, SSQOL and PTPSQ are presented in
Correlation between community reintegration and Caregiver strain index, stroke survivors’ quality of life and patients’ satisfaction.
Correlation investigated | Correlation value | Summary of correlation | |
---|---|---|---|
MSCRIM and PTPSQ | 0.2745 | <0.0001 | Weak positive correlation |
MSCRIM and SSQOL | 0.5190 | <0.0001 | Positive correlation |
MSCRIM and CSI | -0.3707 | <0.0001 | Weak negative correlation |
CSI, Caregiver strain index; MSCRIM, Maleka Stroke Community Reintegration Measure; SSQOL, Stroke-specific quality of life; PTPSQ, Physical therapy patient satisfaction questionnaire.
Ethical clearance was granted by the University of the Witwatersrand committee for research on human subjects: Clearance number M1404452. Participants were given an information letter that explained the procedure and both participants and caregivers were asked to complete a consent form prior to administering the questionnaires. The participants were given the option of withdrawing from the study at any time and participants remained anonymous when the findings were presented.
The objectives this study were to determine the level of community reintegration of stroke survivors in the Johannesburg areas, establish the stroke survivors’ satisfaction with physiotherapy services received at the community health centres within the Johannesburg area, establish the QOL of these stroke survivors and the level of strain experienced by their caregivers. The relationship between community reintegration and caregiver strain, QOL and satisfaction with physiotherapy services was also determined.
Fifty seven percent of the stroke survivors had moderate to full integration and 21% had no community integration. An explanation for those with low integration may be because of the low levels of functional ability at the time of discharge from the hospital. According to Mamabolo et al. (
Reduced community reintegration post-stroke is not unique to this study. In a Hong Kong study by Pang et al. (
Participants experienced some difficulty in all MSCRIM domains with ADLs and self-care and social interaction showing the least amount of difficulty. In a study by Mayo et al. (
Work and education was one of the domains that stroke survivors in this study struggled with the most with a mean score of 2 (SD = 2.3). Participants in a study by Mayo et al. (
The mean score for patient satisfaction with physiotherapy services was 92% (SD = 9.17), which indicates that most patients were satisfied with the services. This is more than the 71% of those satisfied with physiotherapy services in a study by Beattie et al. (
Participants’ lowest scores were for accuracy of bills, availability of parking and treatment prices. For the parking item, participants may have viewed this item as the place where their public transport drops them off or where their private taxi parks in relation to the facility because many of the patients who come to these primary healthcare facilities use public transport. Participants may have viewed the treatment prices item as the travel costs they may have incurred because they did not have to pay for services received. This is different to score in a study of patient satisfaction with physiotherapy services by Beattie et al. (
Patients were happy with the waiting time at the physiotherapy department. The item ‘I was seen promptly when I arrived for treatment’ scored 5 (4 to 5) on the PTPSQ. This could be because of the fact that at the community health centre, a patient is generally given an appointment beforehand and just goes straight to the physiotherapy department upon arrival without having to queue up for the clinic file. This can be viewed as decreased waiting time in comparison to the rest of the clinic.
The mean total for the SSQOL for all 108 stroke survivors in this study was 157 out of 245 (SD = 23.16) with the highest score of 235 out of 245 and the lowest score of 54 out of 245. In a study by Ntsiea, Van Aswegen and Lord (
Participants reported problems with all domains including self-care, social roles and work/productivity. These figures are all lower than the levels found for these domains by Ntsiea et al. (
Mean scores for social roles (14 out of 20) and work and productivity (9 out of 15) were also poor. These scores were lower than those found in the study by Ntsiea et al. (
Most of the caregivers (55%) in this study were strained. The percentage in this study is much lower than the caregiver strain measured in the studies by Mudzi (
There was a positive correlation between MSCRIM and SSQOL, which shows that as community reintegration improves, so does the survivor of strokes’ QOL. QOL is affected by levels of physical impairment, which affects functional outcomes and community reintegration (Carod-Artal et al.
There was a weak positive relationship between MSCRIM and PTPSQ showing a higher level of satisfaction with physiotherapy services in participants with higher levels of community reintegration. Pound et al. (
There was a negative correlation between community reintegration and levels of caregiver strain. Hillier and Inglis-Jassiem (
Lack of clarity regarding costs of therapy as well as understanding of what was meant by the question related to parking in the PTPSQ may have made the results of the PTPSQ less accurate.
This study’s findings are similar to what is in the literature in that not all stroke survivors are reintegrated into their community and that most of them have poor QOL. This decreased level of reintegration leads to increased levels of caregiver strain. Although the stroke survivors may not have fully reintegrated into the community, they did experience high levels of satisfaction with the physiotherapy service.
The authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article.
A.K.-K.was the project leader. A.K.-K. and V.N. and D.M. were responsible for conceptualisation and design of the study. A.K.-K. was responsible for data collection. A.K.-K. and V.N. and D.M. were responsible for data analysis, interpretation, writing and editing the manuscript.