Although current health care service delivery approaches for children with cerebral palsy recognize the importance of including parents in the health care of their child, we do not yet understand how parents experience this phenomenon. In this study, we used grounded theory methodology to explore parents' experiences of health care for their children with cerebral palsy living in a regional area of Australia. Our findings indicate that parents experience health care for their child as a cyclical process of "making the most of their body and their life." Important aspects of care include "learning as you go," "navigating the systems," "meeting needs through partnership," "being empowered or disempowered," and "finding a balance." We suggest modifications to health care service delivery practices that might contribute to improved experiences of health care for this population.
What is known about this topic• Approaches to healthcare service delivery for children with cerebral palsy and their families have changed in recent decades.• Dissatisfaction with care continues for parents of children with cerebral palsy.• It is unclear which approaches to healthcare service delivery are supported by the literature, and how they are applied in clinical practice. What this paper adds• Approaches to healthcare service delivery for children with cerebral palsy supported in the literature are family-centred care, the World AbstractChildren with cerebral palsy have complex healthcare needs and often require complex multidisciplinary care. It is important for clinicians to understand which approaches to healthcare service delivery for this population are supported in the literature and how these should be applied in clinical practice. This narrative review aims to identify and review the evidence for current approaches to healthcare service delivery for children with cerebral palsy. Databases were searched using key terms to identify relevant research articles and grey literature from December 2011 to September 2013. Search results were screened and sorted according to inclusion and exclusion criteria. Thirty-two documents were included for evaluation and their content was analysed thematically. Three current approaches to healthcare service delivery for children with cerebral palsy identified in this narrative review were family-centred care, the World Health Organisation's International Classification of Functioning, Disability and Health, and collaborative community-based primary care. However, healthcare services for children with cerebral palsy and their families are inconsistently delivered according to these approaches and the identified guidelines or standards of care for children with cerebral palsy have limited incorporation of these approaches. Future research is required to investigate how these approaches to healthcare service delivery can be integrated into clinical practices to enable clinicians to improve services for this population.
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