Burden and quality of life of informal caregivers of children with cerebral palsy

Abstract

Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.

Sobrecarga de Cuidadores Primários de Crianças com Cardiopatia Congênita [Burden of primary caregivers of children with congenital heart disease] [Sobrecarga de los Cuidadores Primarios de niños con cardiopatías congénitas]

“…Observa-se predominância do sexo feminino, entre os cuidadores primários de crianças com cardiopatia congênita, mais especificamente a mãe. Semelhantemente em pesquisas internacionais, a maioria dos cuidadores das crianças com condições crônicas são mães 12,13 .…”

Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review

“… 12 , 13 Parents nurturing a child with CP often experience isolation, anxiety, and depression. 14 , 15 Therefore, meeting the informational, resources, emotional, social, and monetary needs of the caregiver would be crucial to reduce their burden. 16 , 17 Moreover, since children with CP require long-term multidisciplinary care, providing a continuum of care through a family-centered approach may be able to reduce the caregiver burden, enhance their capacities and empower them to care for their children.…”

The Chinese version of the Caregiver Difficulties Scale: Psychometric evaluation

“…Caregivers act as the provider, decision maker, companion, custodian and advocate for a child with disability, playing an extremely crucial role in the process of children's rehabilitation and growth (Dambi et al, 2016; Park, 2021). Numerous studies have indicated that the increased burden had a negative effect on caregiver's quality of life as well as well‐being and was associated with child health outcomes (Davis et al, 2021; Dobhal et al, 2014; Farajzadeh et al, 2020; Meade et al, 2021; Miadich et al, 2015; Oliveira Barros et al, 2019; Wiedebusch & Muthny, 2009). Amid this social climate, evaluating caregiver burden and its health impact is an essential component of long‐term care plan for children with disabilities (Wijesinghe et al, 2013).…”