Caregiver Well-Being in Children with Cerebral Palsy

Caregivers of children with cerebral palsy face multifaceted challenges that span physical, emotional and social domains. The lifelong and complex nature of cerebral palsy, a neurodevelopmental disorder characterised by motor impairment and often comorbid communication and feeding difficulties, imposes substantial demands on family members. Physical fatigue arises from manual handling and therapeutic routines, while emotional distress may stem from grief, guilt and uncertainty about the child’s prognosis. Social isolation and stigma further compound caregivers’ experiences, particularly in settings with limited inclusive infrastructure and public support. Quality of life for these caregivers is influenced by the severity of the child’s functional limitations, availability of social and institutional support, coping strategies and socioeconomic factors. Recent work has emphasised the interplay between caregiver burden, adaptive coping and health-related quality of life, highlighting the need for targeted interventions that bolster knowledge, peer networks and access to rehabilitation services. Globally, there is an emerging consensus that sustainable improvements in caregiver well-being require not only individual-level resources but also systemic changes, including community-based support programmes, policies that promote inclusive public spaces and investment in caregiver training.

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Caregiver Well-Being in Children with Cerebral Palsy publication trend

The graph below shows the total number of articles in caregiver well-being in children with cerebral palsy across all publications each year (not limited to Nature Index journals).

Technical terms

Cerebral palsy: A non-progressive neurological condition arising from brain injury or malformation during early development, leading to impaired movement and posture.

Caregiver burden: The multidimensional strain experienced by individuals providing unpaid care, encompassing physical fatigue, emotional stress and social isolation.

Quality of life (QoL): A subjective assessment of physical, psychological and social well-being, often measured via validated questionnaires.

Social support: The perceived availability and quality of assistance from family, friends and community, which can buffer stress and improve coping outcomes.

References

1. Parenting in Cerebral Palsy: Understanding the Perceived Challenges and Needs Faced by Parents of Elementary School Children. International Journal of Environmental Research and Public Health (2023).
2. A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability. BMC Pediatrics (2019).
3. Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLOS ONE (2018).
4. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health (2020).