Literature DB >> 25711842

Parents' Experiences of Health Care for Their Children With Cerebral Palsy.

Emily Hayles1, Desley Harvey2, David Plummer3, Anne Jones2.   

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.
© The Author(s) 2015.

Entities:  

Keywords:  cerebral palsy; children, disability; families; grounded theory; health care, users’ experiences; pediatrics

Mesh:

Year:  2015        PMID: 25711842     DOI: 10.1177/1049732315570122

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  5 in total

1.  Electronic health record and patterns of care for children with cerebral palsy.

Authors:  Brad G Kurowski; Kelly Greve; Amy F Bailes; Janet Zahner; Jilda Vargus-Adams; Mary A Mcmahon; Bruce J Aronow; Alexis Mitelpunkt
Journal:  Dev Med Child Neurol       Date:  2021-03-25       Impact factor: 4.864

2.  Caregivers' Feeding Experiences and Support of Their Child with Cerebral Palsy.

Authors:  Christine Taylor; Ariana C Kong; Jann Foster; Nadia Badawi; Iona Novak
Journal:  J Child Fam Stud       Date:  2021-10-04

3.  Play-based groups for children with cerebral palsy and their parents: A qualitative interview study about the impact on mothers' well-being.

Authors:  Kirsten R Prest; Aleksandra J Borek; Anne-Marie R Boylan
Journal:  Child Care Health Dev       Date:  2022-02-01       Impact factor: 2.943

4.  Disabled and immigrant, a double minority challenge: a qualitative study about the experiences of immigrant parents of children with disabilities navigating health and rehabilitation services in Norway.

Authors:  Shahrzad Arfa; Per Koren Solvang; Berit Berg; Reidun Jahnsen
Journal:  BMC Health Serv Res       Date:  2020-02-22       Impact factor: 2.655

Review 5.  Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries.

Authors:  Ann I Alriksson-Schmidt; Ira Jeglinsky; Gudny Jonsdottir; Abdu Kedir Seid; Gunvor Klevberg; Eva Buschmann; Reidun Jahnsen
Journal:  Scand J Public Health       Date:  2020-12-15       Impact factor: 3.021

  5 in total

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