Caregivers Perceived Enhancers and Barriers to Home Exercise Programme of Children with Cerebral Palsy

Introduction

Cerebral palsy is a non-progressive injury to the brain that causes movement and postural disorder which occurs at infancy or early childhood as a result of brain damage or to a developing brain whose affectation varies considerably as no two individuals are exactly the same [1]. Children with cerebral palsy need intensive therapy or exercise activity to raise the impact of positive adjustments created by neuroplasticity [2]. These exercises, when delivered in the home environment add up to complement the intervention giving directly by the therapist to effect treatment outcome [3, 4]. However, the rates at which the caregivers adhere to these exercises are barely known. Hence the need for this study.

HEP has been said to account for 50% to 80% of total therapy time but a number of challenges has been identified to hinder the efficient use of home exercise programmes [3, 5]. Among children with cerebral palsy, caregivers participation is important for regular and proper HEP. Rehabilitation specialists agree that the involvement of caregivers is cost effective for a more concise rehabilitation program [6]. Accelerated success of rehabilitation goals with improved motor function in children living with disability has been recorded due to the role played by caregivers in performing home programmes. It is also important to know that adherence could be enhanced by increasing the attractiveness of exercise programs thereby improving patient performance (following a model or providing feedback), having feeling of being supported by both care providers and the patients [7]. Generally, various estimates from different works showed very low adherence to home program by patients [8]. Non- adherence to HEP, has been estimated to be as high as 50%, whereas causes of poor adherence has not been well understood nor documented. This study therefore aimed at determining the characteristics of HEP prescribed, caregivers or parents adherence to HEP, the enablers and barriers of performance of HEP, caregivers recommendation on strategies to improve HEP prescription and adherence of children with cerebral palsy to children with cerebral palsy attending physiotherapy in ESUTH park lane Enugu.

Study Hypothesis

From anecdotal clinical experience, we hypothesize that personal factors will constitute the majority of caregivers’ barriers and enhancers of adherence to HEP.

Results

The findings of this study include the Socio-demographic characteristics of the participants, the home exercise programme characteristics, their adherence to home exercise programme, their perceived barriers and enhancers to HEP with their recommended strategies to improve adherence.

Discussion

Approximately 82% of the caregivers in this study were females. This supports earlier study by Olagunju, et al. 2017 which reported similar pattern. This suggests that caring for children with disability lies largely with women. This study also showed that a greater number of those that perform the HEP were mothers and most times share the caregiving responsibility with others in the family. Whereas many of the participants agreed that HEP were given, the result obtained in this study showed that a few percentage of participants showed strict adherence to HEP. Majority of the caregivers showed good understanding of HEP yet there is poor adherence.

The caregivers were also aware of the benefit of HEP yet poor adherence. The study also showed that the therapist laid emphasis on the performance of HEP by majority of the participants and make effort to enquire about the performance of the prescribed exercise at each treatment session using both oral and practical demonstration. While majority of the caregivers were given opportunity to demonstrate the exercises. This supports the work of Lillo, et al. where it was stated that the physiotherapists teaching style / ways the physiotherapist taught parents to acquire skills for their child’s treatment influenced adherence to HEP.

The poor adherence recorded in this could be traced to lack of time as majority of the caregiver claims that lack of time was a major barrier to performance of HEP. This is no wonder as most of them were middle age/ working class population either self-employed or civil servants while few were unemployed and more than half of them have other children to take care of greater percentages of the participants agreed that emphasis on the performance of the HEP by the therapist, obvious improvement of the child’s functional abilities, the desire for child wellbeing and encouragement from the child’ therapist were the motivating factors that kept them going despite the obvious challenges facing the parents of children living with cerebral palsy.

This is contrary to the work of Basaran, et al. [6] where severity of the functional limitation of children with cerebral palsy enhanced adherence of caregivers to HEP. On the other hand, several professional behaviours were identified as significant factors of adherence. These varied across different types of exercises. An association was found between the adherence to flexibility exercises and ‘giving information about evolution’, ‘justifying usefulness of treatments’, ‘using the child as a model during instruction of exercises’ and ‘high satisfaction.

Only two strategies which are use of log book and educating parent/ caregivers, in addition proving emotional and physical support gained recommendation as strategies to help improve adherence to HEP. This agreed with the study by Lilo, et al. [9] and Peplow, et al. [10] and Taylor, et al. [11] on educating parents/ caregivers, in addition proving emotional and physical support while Jonhnson, et al. [12] recognized the use of exercise log book but seek other preferred means of ensuring adherence. This is also supported by Palazzo, et al. [7] who advocates the use of dedicated strategies to improve performance of HEP.

Conclusion

In conclusion, most of the caregivers of children with cerebral palsy were women/ mothers, who have the responsibility to take care of other children in addition to their daily activities and occupation. There is poor adherence to home exercise programme among caregivers of children living with cerebral palsy. The caregivers have good understanding of the home exercise programme because of the child’s therapist take measures to explain then and lay emphasis on them. The caregivers are well aware of the benefit of HEP for their child. There are barriers to the performance of the HEP despite being aware of the advantanges of performing them. There is need to seek strategies to help improve the performance of HEP. Family centered care or approach is recommended to be utilized from the first day of presentation to the clinic.

Counselling session can be organized for the caregivers and their families. Strategies to improve performance of HEP should be adopted by therapists. Sample size for further studies should be increased. Further study should be done utilizing strategies to improve performance of HEP.