Activity monitoring of stroke patients by physiotherapist and caregivers in a hospital setting: A pilot study

Introduction

Stroke is one of the leading causes of death and disability worldwide.¹ The American Heart Association has predicted that 2.58 million people will have suffered a stroke by 2047 in Europe alone.² In India, the prevalence rates for stroke have been observed to vary from 44.29/100,000 to 559/100,000 across various regions and communities across India.³ Functional impairment following acute illnesses, such as stroke, frequently has negative consequences, including sensory, motor, psychosocial, cognitive, and sexual dysfunctions.^4–7 Due to these impairments, stroke survivors have significantly reduced activity levels from an early phase.⁸ Stroke patients are known to be only 13% of the total time to be engaged in activities.⁹

The importance of being active from an early phase, which includes acute and early subacute phases, is well-established in stroke survivors. The evidence for functional recovery is rapid in the acute phase and depends on several factors including the amount of activity that is done by the patient.^10,11 Research shows being active from an early phase influences brain remodelling.^12–16 This prevents loss of muscle mass, increase muscle strength, avoid complications,^17–21 exploit the neuroplasticity and enhance brain functions, and improve gait in an individual.^22–24 Physical activity also has the potential to provide psychosocial benefits.²⁵ Being active facilitates physiological and morphological neuroplasticity after stroke that are responsible for motor improvement.

In addition to physical activity, recent evidence shows that cognitive activities to stimulate the prefrontal cortex, helps in regulating working memory, planning, attention and self-monitoring, organizing and motivation, which results in an improvement in learning new skills and abilities and enhancing functional recovery and behavioural changes.^26,27 Further, being socially active has shown better quality of life.²⁸ Importantly, high levels of social activity have been linked to decreased risk of depression, reduced adverse events, better self-rated physical health, increase life satisfaction and reduced mortality risk.²⁹ To encapsulate, activities can be in the form of physical, cognitive and social which were shown to improve brain plasticity.^30–33

Hence, it is vital for stroke survivors to be active from an early phase. However, patients undergoing inpatient rehabilitation after stroke have limited opportunities to be active.^34,35 As a result, sedentary behaviour during the hospital stay could limit the potential for optimal stroke recovery. Studies suggest that stroke survivors are sedentary in hospital settings and are described as ‘inactive and alone’.¹¹ This is concerning because of the strong association between higher levels of inactivity and a decreased rate of functional recovery.³⁶ For this reason, special interest has been placed to explore the amount of activities in stroke patients during the early phase.³⁷ Although a number of tools exists to measure physical activity, only observational tools like log chart, diaries exists to capture physical, cognitive and social activity.³⁸

Behavioural mapping is a well-known observational method that can be used for recording and observing various behaviours.³⁹ It allows researchers and clinicians the opportunity to collect, analyse and represent information in resourceful ways, which help to determine how one’s environment may influence their behaviour.⁴⁰ It is an effective tool to represent behavioural patterns in any location.^41,42 Behavioural mapping has also been used for assessing patients’ behaviour in hospital settings, including monitoring their physical, cognitive and social activities.^43–45

By using this method to measure stroke survivors’ activity levels in hospital wards can help determine their activity and sedentary behaviour. Existing studies show that behavioural mapping for activity monitoring is mostly carried out by professionals or researchers, including physiotherapists, and is usually done either for one or multiple days.^{43,44,46–48} However, this method poses a challenge for the healthcare workers as it can be time-consuming due to a longer evaluation period. Hence, it may require multiple people to monitor the activities of the patient, making the method less feasible.

Activity monitoring by caregivers of the patients may be an alternative solution. Caregivers are known to be with the patient for a large amount of time during their hospital stay.⁴⁹ However, the accuracy of measurement by caregivers compared to monitoring by rehabilitation professionals need to be ascertained. Therefore, the study aimed to determine the interrater agreement between the activity monitoring of stroke survivors carried out by the caregivers and physiotherapist in an acute hospital setting.

Methods

Results

A total of 60 stroke participants were assessed for eligibility and 17 were recruited for this study. The main reasons for excluding were patients who underwent surgery (n=26), patients with recurrent stroke (n=12) and those who could not comprehend (n=5). The demographic characteristics of the stroke survivors and caregivers who participated in the study are given in Table 1 and Table 2, respectively.⁵⁷ The physiotherapist was an intern who had received training to monitor the stroke patients activities.

A total of 17 caregivers of the stroke survivors, of which 10 were male and seven female participated in the study with the mean (SD) age of 40.11 ± 9.2 years. The socio-educational details of the caregivers who participated in the study are given in Table 2.

The behavioural mapping carried out showed the following observations. Out of the possible 629 observations (37 observations/participant), the physiotherapist marked 535 (85%), while caregivers marked 424 (67.5%). A total of 272 out of 424 (64.2%) caregiver observations had an agreement with the physiotherapist observations.

Agreement between caregivers and physiotherapist varied significantly for different activities as it ranged from 0% (lowest) for bathing, dressing and 100% (highest) for grooming. The percentage agreement for different activities monitored by caregivers and physiotherapist are shown in Figure 1. Further, the agreement of activities under physical, cognitive and social domains were 42, 38 and 43%, respectively.

Figure 1. Percentage agreement for different activities.

Inter-rater agreement between the caregiver and the physiotherapist for the various activities showed a Cohen’s Kappa of 0.61 with 95% CI (0.55, 0.66) and p value <0.001. Our study had a 90% power, that we caluculated using G*Power software.

Discussion

The aim of this study was to compare the observations made by physiotherapist and caregivers to capture the possibility of the caregivers in monitoring the patients’ activities in acute care settings. Our results showed that the agreement between both the observations was 64.2%, implying that caregivers could not monitor the activity of patients as accurately as the physiotherapist. However, the discrepancy in the observations could be due to many reasons. First, the subjectivity of the behavioural mapping by itself could have led to the variability in observations.⁵¹ Second, though the instructions were given to observe every 15 minutes, the time of observation could have varied by seconds between the physiotherapist and the caregivers, which is enough to change the activity. For example, in the initial seconds of 8 AM (8:00:00) the patient may have been sitting, but by the end of 8 AM (8:00:45), he may be standing and talking. Hence, the patient could have switched their activity between those two observations, leading to variability. Another reason may be due to the variability that could have occurred in situations while the patient was performing more than one activity simultaneously. Although the caregivers were asked to mark all the activities in such situations, it was noted that quite a few times the caregiver had only marked a single activity whilst the physiotherapist had marked dual activities. For instance, a patient walking while talking over the phone was marked for walking alone by the caregiver, while the physiotherapist marked both walking and talking on the phone.

Though the caregivers are with patients most of the time in the hospital, they may move out of the ward for various requirements related to the patient and for other personal reasons. These reasons could explain the reduced percentage of observations by caregivers compared to the physiotherapist. These reasons were supported by a recent study, which states that a family caregiver has high intensity role in the hospital as they have to multitask both physically and mentally.⁵² These roles make it challenging for them to tend to additional work besides situations associated with illness and dependency of the patient during the hospital stay.⁵³ Additionally, evidence shows that caregivers of acute diseases like stroke have more compounded situations due to the sudden change in adaptation required compared to chronic diseases.⁵⁴ Another reason could be the change in caregiver of the patient during the observation day. The replaced caregiver would have not received the entire instructions from the previous caregiver leading to loss of vital information regarding the observations. Hence, the new caregiver might not have understood the procedure adequately and did not record the activities diligently. Further, although we used pictures along with words to depict the activities in the log chart, we noticed that many caregivers had not marked the activities for all the time slots. The comprehension level and differences in the education level could be the reason for this. All caregivers had some level of formal education except for one.

A total of 12 caregivers in our study had no previous hospital experience. Since the majority of the caregivers lacked experience in managing a hospital, anxiety and unfamiliarity of the situations in the hospital could have been the reason for the overall reduced activity loggings. This was supported by an earlier study that showed that new caregivers have a higher level of burden and anxiety in the hospital,⁴⁹ which might have influenced the observations significantly.

We noticed that caregivers could log some additional activities that the physiotherapist could not. Bathing and dressing were a few such activities that the physiotherapist had not marked. Due to the separate bathing area where the caregivers accompanied the patients sometimes to assist, they could log the activity. However, the physiotherapist on such occasions, could not differentiate and had either not logged anything or marked it as toileting. Whereas, overall, the caregiver had logged both toileting and bathing appropriate to the time slots. In this study, both the physiotherapist and the caregiver did not complete all observations. In the hospitals, for various tests, patients are taken to different test/diagnostic rooms,⁵⁵ during which, it would be difficult to monitor patients for their activities. This could be one of the primary reasons for lesser observations made by both physiotherapist and caregivers. These findings suggest that combining the bathing and toileting activity under a single category and adding a section for the test times, which is common for stroke survivors in the early phase could mitigate the disagreement. These factors could be used as anticipated problems in future studies.

The Kappa statistics showed 60% agreement between the physiotherapist and the caregiver. Even though this is not ideal, there is moderate level agreement seen. There may be a potential for enhancing the agreement levels if all the above-mentioned problems are addressed.

In this study, the stroke survivors were observed every 15^th minute by the caregivers and the physiotherapist in the hospital. This behavioural mapping gave an insight into the activity levels of stroke survivors in the hospital during the early phase. As this discussed earlier, it is important to determine this due to the impact the activity levels have on recovery. Observations every 15^th minute helps us to assess and study the behaviour as it is in the real world, which is a hospital in this study. This is in line with the concept of Ecological Momentary Assessment (EMA) that uses repeated collection of real-world data and is a valid concept to measure participants’ behaviour and experience in their natural environment.⁵⁶ In our study, we collected data of stroke survivors as they go about with their lives in the hospital. Determining this could lay foundation to resolve the underlying issues for a particular unwanted behaviour which is sedentary lifestyle.

To our knowledge, this is the first study that compared behavioural mapping between the physiotherapist and the caregivers for the activities performed by stroke patients. The limitation of this study is that it had a low sample size, as this was a phase in a bigger study. We did not do location mapping during the behavioural mapping as it was a fixed location. All the patients recruited were from the same general ward. In addition, as the monitoring was new and unfamiliar to the caregivers, we did not impose the extra detail of location and people present, which are usually carried out during behavioural mapping. Second, the observations in the study were done only on a single day. This limited time window did not make an opportunity for the caregivers and physiotherapist to mark all the activities present in the activity log chart. This could be because some of the activities present in the log chart would not have been performed by the patient on the observation day. Additionally, the change in caregiver would not have allowed the primary caregiver to capture all the activities across the log chart. This can be resolved with multiple days of observation, with which we can expect a broader capture of activities and a better learning curve for activity monitoring. Third, behavioural mapping is a subjective measure of assessment. However, it is the best available method for assessing or recording an individual’s behaviour. Alternative activity tracking methods, including wearable sensors, although more objective method of assessment captures physical activity alone and not cognitive or social activity.

Although activity monitoring by caregivers was in moderate agreement with the observations made by physiotherapist, it is important to note that some of the toiletry activities were monitored only by the caregivers. Further, the agreement level may have scope for improvement considering that some of the above issues are modifiable. Thus, there is a potential for caregivers to perform behavioural mapping of stroke. This paves way for a feasible method of behavioural mapping in healthcare settings. Future studies are directed towards the larger sample and longer periods of activity monitoring.

Data availability