Adherence to Home Exercise Program among Caregivers of Children with Cerebral Palsy

Abstract

ÖzetAmaç: Bu çalışmanın amacı, Serebral Palsili (SP) çocukların bakıcılarının ev egzersiz programına uyumunu etkileyen faktörleri belirlemektir. Gereç ve Yöntemler: Yüz kırk yedi SP'li çocuğun bakıcısı çalışmaya dahil edildi. Bakıcıların egzersiz programına uyumları bir anket ile belirlendi. Çocukların ve bakıcılarının sosyo-demografik verileri, aile özellikleri, çocukların SP tipi ve Kaba Motor Fonksiyon Sınıflandırma Sistemi (KMFSS) seviyeleri, bakıcıların ruh sağlığı ve tükenmişlik ölçeklerine ait verilerin tümünün bakıcıların uyum durumu ile ilişkili olup olmadığı araştırıldı. Bulgular: Univariate testlerde istatistiksel olarak anlamlı verilerin [çocukların yaşı, ağırlığı, KMFSS seviyesi, bakıcıların yaşı ve Maslach emosyonel tükenme (EE) skoru] egzersiz programına uyumu tahmin gücünü belirlemek için lojistik regresyon modeli ile analiz edildi. Sonuç: Serebral palsili çocukların fonksiyonel limitasyonlarının ciddiyeti bakıcıların ev egzersiz programına uyumlarını arttırırken, bakıcıların tükenmişlikleri uyumu olumsuz etkilemektedir. Bu nedenle bakıcıların sosyal ve medikal olarak desteklenmeleri başarılı ev egzersiz programları için gereklidir. Anahtar Kelimeler: Egzersiz, serebral palsi, bakıcı, ruh sağlığı, tükenmişlik, özbildirim, uyum AbstractObjective: The objective of this study is to determine the factors that affect the adherence to home exercise programs among caregivers of children with cerebral palsy (CP). Methods: The caregivers of 147 children with CP were recruited for the study. The adherence status of the caregivers to an exercise program was assessed by a survey. The sociodemographic data of both children and caregivers; family characteristics, CP type, and Gross Motor Function Classification System (GMFCS) level of the disabled child; and inventories related to mental health and burnout of the caregivers were evaluated to determine whether these data were related with the adherence status or not. Results: Using statistically significant parameters in univariate tests [age, weight, and GMFCS level of the children and age and Maslach emotional exhaustion (EE) score of the caregiver], a logistic regression model was constructed to predict the adherence to exercise programs. GMFCS level and Maslach EE score were statistically significant independent factors that predicted the adherence to home exercise programs. Conclusion: The severity of the functional limitation of children with CP seems to enhance the adherence of caregivers to home exercise programs, while the burnout of caregivers has a negative impact. Caregivers should be supported socially and medically for a successful home exercise program.

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“…[14][15][16] While therapists have become skilled at incorporating meaningful, task-specific practice into their plans of care, they struggle to achieve high-volume practice both during and outside therapy sessions. 17 Although regular homeexercise programs, involving children and their caregivers, are seen as a crucial part of achieving the volume of practice necessary to drive change, 18,19 these programs can easily become 'chores' that challenge the motivation of children and parents to sustain these activities over time. 15 A study of caregivers of children with disabilities showed that 66% of the caregivers were non-compliant with the home exercise programs.…”

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“…Adherence to such frequency and duration for all the 9 children reflects a very high level of adherence and the success of the study by promoting such commitment. Compared to the results seen in Basaran et al, (2014) this reflects a 100 per cent adherence to the home program. This was justified by the subjective feedback by parents of how motivating and supporting it was to keep in contact through emails and Skype which provided a strong feeling of support and that the caregivers and children were not alone.…”

“…On the other hand, the type of CP or the associated conditions such as seizures and visual complications were not seen to be predictors of poor adherence (Basaran et al, 2014).…”

“…However, difficulty in overcoming stress and exhaustion would result in the caregiver failing to adhere to the required home program. According to that many factors that would increase demands upon the parents would at the end lead to burnout and therefore lack of adherence however none of these factors (Number of sibling, other siblings younger than three years, presence of other siblings with CP, presence of other family members in need of care) that were predicted by the authors have shown no significant results, which indirectly affect adherence (Basaran et al, 2014).…”

“…Given the fact that only parents that feel burnout have a direct correlation with low adherence and not depressed or stressed parents could indicate the phases in which the parents go through to finally accept the disability of their children and therefore show less adherence. In this case as suggested by the study (Basaran et al, 2014) more parent psychological support should be offered as soon as the diagnosis has been made. In addition to that parents should be more educated about their child's disability and level of prognosis expected to provide a clearer vision of what is expected from the parents and children to avoid future burnout and moreover less adherence.…”