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Children with cerebral palsy (CP) show limitations in self-care management such as dressing, bathing, feeding, and mobility; activities of daily living (ADL) [1]. Therefore, they require a high level of assistance from their caregivers. These caregivers report experiencing increased physical detriments in their mobility which limits their ability to complete tasks such as walking, as their child ages and increases in weight [2]. By the age of 12, the child can weigh up to 40 kg [3]. Concurrently, 65% of caregivers were shown to be lifting more than 20 kg on a regular basis [4]. From birth to adulthood, caregivers learn and adopt poor movement mechanics to ease the difficulty of moving the child. Overtime, caregivers may develop maladaptive movements such as increased bending in the lumbar spine, increasing the risk of injury should a heavier load be introduced [5]. Consequently, when this pattern is transferred into the child’s adolescence and then adult years, it creates the potential for problems for the caregivers.

The longer the caregiver takes care of the child, the more their physical and psychological condition worsens [6,7]. Long term poor mechanics slowly bring about chronic musculoskeletal pain, and with 14.7 hours per day spent on caregiving activities the detrimental effects add up. Repeated poor movements when transferring the child can accumulate as microtraumas, which may result in overuse injuries and long term damaging effects [5,8,9]. Tissue compliance reduction over time leaves the caregivers susceptible to the attainment of chronic diseases such as arthritis or chronic back pain [10]. Findings by Shojaei et al also demonstrate that long-term exposure to abnormal movement mechanics can unfavourably alter joints, increasing susceptible to additional pain or injury [11].

With the overwhelming attentional demands of the child as they age, the caregivers tend to neglect their own self-care making a health improvement intervention directed at caregivers essential [2]. An analysis by Tonga and Duger revealed 94% of caregivers back postures were 20 degrees over-flexed and rotated with their lower extremities right positioned (53%) or with a flexed knee (45%) [4]. These positions are shown to be the primary mechanism through which one acquires back injuries, but also presents an opportunity to introduce a movement correction program to reduce the attainment of chronic conditions. The caregivers are tasked with helping their child with their everyday tasks, but it is their quality of movement which presents a danger and a detriment to their own health.

Many of the educational materials accessible to the caregivers of children with CP primarily target the health and well-being of the child but not the movement mechanics and well-being of the caregiver [12]. In short, there is limited information on the short and long-term effects on the education of caregivers of children with CP in respect to proper movement mechanics. It is therefore important to intervene, as soon as possible, to encourage healthy behaviours and postpone the accumulation of related health problems.

Three different areas can contribute to chronic pain in caregivers: increased child weight, decreased tissue compliance as caregivers age, and poor caregiver movement mechanics. Of the three areas, the most easily modified component is the poor movement mechanics. Musculoskeletal pain can be prevented if proper movement mechanics are demonstrated to the caregivers, avoiding unnecessary use of health care resources and enhance self-care managements [13,14]. Patient education helps improve one’s understanding of back pain, introduces steps to manage it, and gives the caregiver the power to take action in improving their back health [15]. After a 50 minute educational session, Kirby et al were able to show an increase in caregiver ability to effectively navigate their environment after a wheelchair skills training program [16]. Essentially, to improve caregiver biomechanics, the primary goal should be to bring about a behavioural change and the implementation of an appropriate behavioural change model is an important step to do so. Bandura’s social cognitive theory helps to improve self-efficacy, reduce maladaptive behaviours and improve observational learning, which all leads to changes in health behaviours [17].

There is a need and a demand for an educational program specifically directed at caregivers of children with CP to tackle and improve body mechanics before chronic pain develops [6]. Additionally, a space and time to practice these proper mechanics under supervision can facilitate proper understanding and development of the skills required. Tonga and Duger [4] concluded that a protective back health program needs to be developed for cerebral palsy children’s caregivers to actively teach proper transfer and lifting techniques. Additionally, Kaya et al concluded training for caregivers from wheelchair to bed and vice versa was required as caregivers do not currently have enough knowledge to do the activity correctly [18]. In a meta-analysis by Demoulin et al, it was uncovered that simply educating on biomechanical movements was ineffective in preventing lower back pain [19]. A more rigorous program which incorporates a biomechanical awareness session, exercise and self-care management education may prove to be more effective an intervention. In addition to being cheap and easy to implement, this intervention should increase the capacity and awareness of the caregivers to safely execute their activities of daily living, while assisting their child with CP. Therefore, the aim of this program is to create a biomechanics educational intervention for parents of children with CP, in order to help improve caregiver movement mechanics and reduce chronic musculoskeletal pain. We hypothesize that an intervention focused on movement biomechanics will improve movement knowledge and reduce musculoskeletal pain for caregivers of patients with cerebral palsy.

Recruitment

The participants were recruited from the LIFEspan. The LIFEspan service is a unique service created by Toronto Rehabilitation Institute (TRI) and Holland Bloorview Kids Rehabilitation Hospital. LIFEspan provides services for youth and young adults who have cerebral palsy and childhood onset acquired brain injury (ABI), while acting as a bridge between pediatric and adult rehabilitation services.

Inclusion Criteria

Caregivers were recruited through a voluntary sign-up process. The inclusion criteria allowed for caregivers of children with cerebral palsy. In addition, caregivers had to be able to attend the caregiver biomechanics intervention.

Description of the Educational Program Components

The two components of the intervention were an E-learning module and a practical in-service/telehealth session. The E-learning module was an interactive tool which provides caregivers with easily accessible resource to assist in learning and internalizing basic biomechanical knowledge. The practical in-service session reinforced the E-learning module and provided a group setting for behaviour change to occur through Bandura’s Social Cognitive Theory tenets. The in-service session can also be completed through telehealth services to abide by Covid-19 safety protocols.

E- Learning Module Implementation

The E-learning module was a 2-hour online tool divided into 6 topics containing 12 instructional videos that provided biomechanics background knowledge and facilitate a comprehensive learning and behaviour change intervention. (Table 1)

Table 1: E-learning module topics.

Practical In-Service/Telehealth Session Implementation

The 2-hour practical in-service session was designed to give the caregiver time for “hands-on” simulated practice based on the 6 topics presented in the E-learning module. This environment allowed for an exercise rehabilitation specialist (ERS) to correct improper movements, elaborate and demonstrate topics, address gaps in caregiver knowledge and restructure caregiver’s behaviour through the use of healthy movement cues. The specific ways in which Bandura’s Social Cognitive Theory tenets were applied in this intervention are described in Table 2 [17]. Overall, this session can be summarized into five key points: 1) Neutral spine, 2) Pushing the hips back, 3) Aligning the external mass with the midline of the body 4) Stable base of support and 5) Weight shifting.

Table 2: Direct application of the Bandura’s Social Cognitive Theory into the Caregiver Biomechanics Education Intervention.

Assessments and Evaluation Tools

Four outcome measures were used to gather information on caregiver’s response to the intervention: the caregiver biomechanics knowledge questionnaire (CBKQ), the Oswestry Lower Back Pain Scale, the Pain Assessment Tool and a modified Child Health Questionnaire (cerebral palsy specific) [22-24]. All outcome measures were completed prior to the E-learning module; however, the CBKQ was also completed after attending the practical in-service session. The CBKQ tests the caregiver’s knowledge pre- and postintervention. It is comprised of a battery of questions which test the caregiver’s knowledge on bodily biomechanics, healthy/unhealthy movement techniques and methods of alleviating musculoskeletal pain. The modified Child Health Questionnaire (cerebral palsy specific) illuminates how the child’s physical health limitations impacts the caregiver’s own health. This was done by assessing areas of the caregiver’s life which directly play a role in caregiver duties, such as dressing and transferring the child.

Skills Required

For implementation, the ERS should have an understanding of basic anatomy and physiology, cerebral palsy, proper movement techniques, exercise prescription and benefits, caregiver duties, and the principles of social cognitive theory.

Equipment Required

Implementation presents minimal costs, requiring: two chairs with hand bars or wheelchairs, two adjustable clinic beds, five-pound dumbbells, a spine model, two basketball-sized balls, two towels and three pillows. It is best to have two instructors to allow for effective technique demonstration.

Caregiver Description (Table 3)

Table 3: Caregiver characteristics, child’s age range and average pain level.

Caregiver Participation Summary

Five caregivers registered for the In-service and E-learning module. Four of five caregivers filled out the pre-questionnaire quiz. One of five caregivers did not attend the in-service because of her ill child. One of five caregivers completed the E-learning module but did not participate in the In-service. Three of five caregivers completed the Pre-assessment. One of five caregivers did not fill any of the preassessment materials.

Four of five caregivers participated in the In-service. Two caregivers arrived 10 minutes after the start time. One of two caregivers expressed wheel transit as the reason why she arrived late. Two other caregivers arrived 15 minutes after the start time. These two missed the awareness section of the In-service.

One of four attending caregivers brought their child with cerebral palsy to the in-service even through specific instructions were given not to do so. The child was quiet and undisruptive through-out the entire session but began to distract his mother by the end of the in-service. Four of four attending caregivers filled in the post-quiz. Average score increase was 4.6 points. One of four attending caregivers presented as having ESL level understanding of English. Two of four attending caregivers were a married couple.

Pre-Post Caregiver Biomechanics Knowledge Questionnaire (CBKQ) Results (Table 4)

Table 4: Caregiver pre-post quiz results, mean, variance, standard deviation.

Statistical analysis of CBKQ

One-way repeated measure paired T-test analysis revealed a p value=0.002 which is statistically significant with an alpha value set at 0.05. (Figure 1 and 2)

Figure 1: Caregiver pain rating.

Figure 2: Caregiver pain ratings while completing caregiving tasks.

In-service sections analysis

Yoga and exercise section: The caregivers arrived late; therefore, there was no time for this section to occur.

Body Awareness section: This section was used to teach caregivers the difference and importance between proper and improper body mechanics. The caregivers ran through 2 scenarios led by two ERS. The caregivers were instructed to pick up and place down a basketball from a bed to a chair and then from a chair to the floor in whatever fashion they felt comfortable. The goal was to examine the caregiver’s body mechanics and to draw attention to it, in order to bring awareness to their improper movements. The caregivers found this section to be very important because they were able to examine their own movements. Most importantly, the ERS were able to identify incorrect biomechanics giving an indication of the caregivers’ current level of understanding. The caregivers showed to have minimal understanding of appropriate body mechanics. Statements such as, “how do I bend without my back” were expressed by the caregivers.

Torque, body positioning and injuries section: ERS used a spine model to demonstrate spinal mechanics. ERS pointed out specific areas of the body, allowing the caregivers to gain a better understanding of the anatomy of the spine during movement.

During the ‘base of support’ topic, the caregiver practiced the split and shoulder width stance base of support. At this point, during the session, the caregivers began to demonstrate an understanding of the fundamentals of implementing proper body mechanics.

During the spine mechanism of injury topic, the analogy of an elastic band breaking after multiple stretches of small forces or one large, applied force was used to explain how the ligaments, muscles and discs in the spine can become damaged with different acute versus chronic loads. This analogy directly translated into using proper mechanics during the transfer (high load) of a child and when placing clothing on their child (low load).

During the ‘objects close to the body’ topic, the ERS used experiential methods to help the caregivers understand the importance of having the object as close to the midline of the body as possible to help reduce bodily strains, rotations and to make the lift easier. By using a 5-pound dumbbell, the caregivers were instructed to hold the weight close to their chest for 10 seconds and away from their body for 10 seconds to understand the difference in difficulty. The idea was to illustrate the difference in rotational forces and the amount of work needed to support both scenarios with the item being close the chest the better option.

In the ‘bending at the hips, knees, and ankles’ topic, one caregiver had some trouble bending at her knees because it was producing knee pain. To fix this issue, the ERS suggested she pretend that she was sitting into a chair. The knee pain was resolved, and she was able to enter into a proper posture and mechanics.

Demonstrate and practice section: The caregiver actively practiced the squat lift up and down phases. ERS emphasized the importance of using a technique that worked based on the environment they had at home. The emphasis was to place oneself in a situation which did not compromise ones’ lower back. The first ERS ran through the motion slowly, emphasizing appropriate movements and steps. The second ERS demonstrated the movement at a standard pace to show how it would be used in a more realistic setting. A two-person deadlift was demonstrated as requested by the caregivers, with an emphasis placed on counting prior to lifting.

Specific transfer techniques section: The caregivers observed as the first ERS transferred the second ERS from the chair to bed. The ERS further explained details based on the questions asked by the caregivers. Caregivers required extra information on methods to turn their child in bed easier. There was an emphasis placed on using their body weight to shift the child instead of just the hands and upper body.

One caregiver used the cradle lifting technique at home and was shown a proper method to improve their biomechanics. This caregiver found the method demonstrated to be far safer than what they were originally conducting. The caregiver was able to recognize and contrast their method of completing the cradle technique with the method demonstrated by the ERS, based on the new knowledge they had acquired during the duration of the session.

Proper Biomechanics during small movements section: By this section, caregivers were demonstrating a good grasp on proper postures and transfer techniques. To help further their understanding, the ERS ran a scenario conducting poor movement techniques while pretending to feed and place clothing on the other ERS. Caregivers were asked to point out incorrect movements and give recommendations on how to correct it to make it safer.

Resting positions and their importance section: Specific resting positions were demonstrated to the caregivers with an emphasis on using it sparingly with a focus on continuous motion and reduced sedentary time.

Exercises for the lower back sections: This section was not completed due to time constraints.

The goal of this intervention was to implement a biomechanical behaviour change program driven by Bandura’s Social Cognitive Theory by giving caregivers of children with CP the tools to support their own health needs. In addition, the home simulated environment better encouraged direct application of acquired knowledge. The intervention was also designed to overcome the shortcomings of ineffective biomechanics education implementations stated prior [19].

By the end of the in-service intervention, caregivers showed signs of implementation of biomechanics into their actions when caring for their child. The caregiver who brought their child into the inservice program expressed applying what they learned on their child while helping them to use the washroom. There was direct learning, adaptation, and modification of behavior just minutes after the intervention was completed.

When examining the behavioral change wheel framework, which helps to understand behavior, there are three areas to be kept in mind: capability, motivation and opportunity [25]. By choosing to attend the in-service, the caregivers demonstrated their motivation to better their health by seeking out relevant knowledge.

A space was provided in which the caregivers could practice and understand the importance of proper biomechanical movements and increase their confidence in their ability to perform these tasks. Caregivers were able to transfer the knowledge learned into various settings. When examining the pre- and post-biomechanics questionnaire, caregivers’ knowledge improved by an average of 43% which was significant. As such, the caregiver’s understanding of safe biomechanical procedures was deemed clinically important.

Critical to improving caregiver health and reducing chronic pain related to poor movement mechanics is active usage and application of learned skills while assisting the child. However, for this to occur, caregivers must believe they can effectively apply the skills and techniques learned during the program. Bandura Social Cognitive theory was used to elicit behavior change [17]. Implicit to Bandura Social Cognitive Theory is the effect it has on increasing one’s selfefficacy which is critical in the caregiver’s confidence when applying learned techniques. Hendrix et al. demonstrated that an intervention incorporating the tenants of Bandura Social Cognitive Theory can increase the self-efficacy of caregivers when completing home care tasks and managing patient symptoms [26].

A factor that cannot be overlooked is the length and duration of the program, as it required one, three-hour session. A one-time, intensive, face-to-face intervention for caregivers supporting in-home care appears to be just as effective as multiple sessions in improving musculoskeletal pain [27,28]. This was a key consideration during the planning of the program, due to a lack of time presenting as a primary barrier for this population. Moreover, caregivers of children with CP demonstrate lower levels of adherence for interventions requiring multiple sessions and a high time commitment [29,30]. Therefore, it was critical that caregivers received maximum benefit in the shortest amount of time. The caregiver’s ability to partake was increased due to the low commitment requirement.

Implementation considerations

Limitations

A primary limitation of this intervention is the small sample size presented and lack of completion of some pre- and post-assessments. Even so, the information gathered and improvements established show a positive outcome after the completion of this intervention, highlighting the utility of such a program in a larger more comprehensive study. By objectively examining the caregivers’ knowledge attainment and subjectively examining caregiver comments and appreciation for the intervention, it shows the importance and the success of the program.

Lack of Time: This study presents a large barrier to intervention use, lack of time. With the day-to-day task of providing care for their child with cerebral palsy, caregivers have limited time to complete other tasks, such as attending programs which they believe are beneficial for their health. Therefore, some caregivers chose to complete either the e-learning module or to attend the in-service session. The intervention was deemed successful if caregivers completed both the online component and in-service section [31]. Typically, mothers are left responsible to take care of their child alone at home and with no other caregiver available while they are away, the individual is less likely to attend the educational program. Presenting caregivers with an opportunity to bring their child to the in-service session may help mitigate this barrier.

No Access to Computers: This population’s primary reason for not completing their assessment forms was due to lack of access to a computer or it was not compatible with their phones. In the future, it would be important to create a printed program or one that is compatible with a phone to reduce the associated barrier. Caregivers could also be directed to local libraries to access the program forms.

Length of In-service Program: The allocated time for the in-service program was too short forcing some components to be omitted from of the session. In the feedback evaluation, caregivers expressed needing more time to practice transfers and exercises. Therefore, making the program 2.5 hours instead of 2 hours would be beneficial.

Telehealth Access: Due to Covid-19, access to in-person elective healthcare services for those with chronic disease has been greatly reduced [32]. This increases the physical burden on caregivers of children with CP as they have reduced access to support to manage their own personal health. This program presents an accessible and easy to implement program through increased use of telehealth. Through online platforms, all components of the program can be completed. Additionally, instead of relying on a simulated environment of the clinic, healthcare workers can educate caregivers within their home environment and with available resources, while adhering to appropriate safety protocols. This can help reinforce the techniques learned as they practice within the same environment, they use the skills in.

Future Steps/ Sustainability of the Project

Hospitals and clinics which possess programs directed at families with a child experiencing CP are capable of most effectively implementing this program, due to prior relationships. The ease and feasibility of incorporating our intervention into already existing programs which target families of children with CP makes it a step forward in preventing and reducing chronic pain in this population. Furthermore, caregivers may learn of the child’s CP diagnosis by the age of 2 and are educated on how the disorder can affect the child’s social, cognitive and physical well-being [33]. However, this is also offering an opportunity to implement a self-care biomechanical program as a preventative method for chronic musculoskeletal pain. Earlier intervention reduces long term sick leaves for back pain in the working class, which may allow CP caregivers the ability to better manage other demands in their life [34,35]. Additionally, with reduced debilitating chronic conditions, these caregivers may be able to better help the child for a longer duration. Therefore, this program offers an opportunity for short and long-term health benefits for caregivers of children with CP.

Once the intervention has been integrated into healthcare facilities and centres, it can become a program which is conducted every 2-6 months to give an appropriate time frame to practice, incorporate and relearn healthy habits. The E-learning portion can be a section that is continually provided to the caregivers in the 2-6-month time period when no practical in-service sessions are available. Another method of implementation is through specific interventions designed based on the child’s age. A practical in-service session can be held when the child is in their infancy, adolescence, teenage and adult years. The sessions would serve as a refresher but would also provide the opportunity to address new challenges that caregivers may experience as the child ages and increases in weight. Overall, this easily implementable program has the potential to improve caregiver mobility and reduce chronic pain, improving overall health and quality of life of the caregiver [14].

Our intervention offers a means to prevent or reduce the musculoskeletal pain of caregivers of children with CP by increasing their awareness and self-efficacy in identifying and correcting improper movements. Implementation of this caregiver program can improve knowledge and execution of proper biomechanics with additional social support. By the end of the intervention, participants were aware of proper movement mechanics and appropriate methods to alleviate musculoskeletal pain. Caregivers also showed proficiency at actively using these skills after the session and in follow-up appointments. The program offers indirect positive impacts as the child’s health conditions is linked to the caregiver’s ability to support them. This program could help change participants’ biomechanics and reduce the occurrence of chronic pain, primarily low back pain.