Parents' experiences of health care for their children with cerebral palsy

Hayles, Emily, Harvey, Desley, Plummer, David, and Jones, Anne (2015) Parents' experiences of health care for their children with cerebral palsy. Qualitative Health Research, 25 (8). pp. 1139-1154.

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Abstract

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.

Item ID: 37604
Item Type: Article (Research - C1)
ISSN: 1552-7557
Keywords: cerebral palsy; children, disability; families; grounded theory; health care, users' experiences; pediatrics
Funders: Mackay Hospital and Heath Service Private Practice Fund
Date Deposited: 02 Mar 2015 23:36
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111703 Care for Disabled @ 40%
11 MEDICAL AND HEALTH SCIENCES > 1103 Clinical Sciences > 110317 Physiotherapy @ 60%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920201 Allied Health Therapies (excl. Mental Health Services) @ 60%
92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 40%
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