Anne J A Kruijsen-Terpstra1, Olaf Verschuren2, Marjolijn Ketelaar3, Larisa Riedijk4, Jan Willem Gorter5, Marian J Jongmans6, Hennie Boeije7. 1. Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Rembrandtkade 10, 3583 TM Utrecht, The Netherlands; Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands. Electronic address: a.kruijsen@dehoogstraat.nl. 2. Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Rembrandtkade 10, 3583 TM Utrecht, The Netherlands; Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands. Electronic address: o.verschuren@dehoogstraat.nl. 3. Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Rembrandtkade 10, 3583 TM Utrecht, The Netherlands; Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands. Electronic address: m.ketelaar@dehoogstraat.nl. 4. Faculty of Social Sciences, Department of Methodology and Statistics, Utrecht University, PO Box 80140, 3508 TC Utrecht, The Netherlands. Electronic address: l.riedijk@students.uu.nl. 5. Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands; CanChild Centre for Childhood Disability Research, McMaster University, 1400 Main Street West, Hamilton, ON, Canada L8S1C7. Electronic address: gorter@mcmaster.ca. 6. Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands; University Medical Center Utrecht, Wilhelmina Children's Hospital, Department of Neonatology, Utrecht, The Netherlands; Faculty of Social Sciences, Department of Child, Family and Education Studies, Utrecht University, PO Box 80140, 3508 TC Utrecht, The Netherlands. Electronic address: m.j.jongmans@uu.nl. 7. NIVEL-Netherlands Institute for Health Services Research, PO Box 1568, 3500 BN Utrecht, The Netherlands. Electronic address: h.boeije@nivel.nl.
Abstract
OBJECTIVE: To explore the experiences and needs of parents of young children (aged 2-4 years) with cerebral palsy (CP) regarding their child's physical and occupational therapy process in a rehabilitation setting. METHODS: A qualitative design was used involving semi-structured interviews with 21 parents of young children with CP. Interviews were conducted until informational redundancy was achieved. RESULTS: Three major themes were identified: Information, communication and partnership. A fourth, overarching theme emerged: The process of parent empowerment. Experiences and needs differed between parents and changed over time. CONCLUSION: This study suggests that various themes play a key role in the experiences and needs of parents of young children with CP. The identified themes provide important insights into how and why service providers might change their approach. PRACTICE IMPLICATIONS: Becoming empowered is a dynamic process for parents, in which both parents and service providers play a role. Service providers should continually adapt their role to parents' needs of information, communication and partnership, and they should support and facilitate parents in becoming empowered. For that, service providers should be educated on the process of parent empowerment, on ways to facilitate this process and on the importance of involving and interacting with parents. This allows families of young children with CP to be provided with services that best suit their needs.
OBJECTIVE: To explore the experiences and needs of parents of young children (aged 2-4 years) with cerebral palsy (CP) regarding their child's physical and occupational therapy process in a rehabilitation setting. METHODS: A qualitative design was used involving semi-structured interviews with 21 parents of young children with CP. Interviews were conducted until informational redundancy was achieved. RESULTS: Three major themes were identified: Information, communication and partnership. A fourth, overarching theme emerged: The process of parent empowerment. Experiences and needs differed between parents and changed over time. CONCLUSION: This study suggests that various themes play a key role in the experiences and needs of parents of young children with CP. The identified themes provide important insights into how and why service providers might change their approach. PRACTICE IMPLICATIONS: Becoming empowered is a dynamic process for parents, in which both parents and service providers play a role. Service providers should continually adapt their role to parents' needs of information, communication and partnership, and they should support and facilitate parents in becoming empowered. For that, service providers should be educated on the process of parent empowerment, on ways to facilitate this process and on the importance of involving and interacting with parents. This allows families of young children with CP to be provided with services that best suit their needs.
Authors: Laura Ellen Ashcraft; Miya Asato; Amy J Houtrow; Dio Kavalieratos; Elizabeth Miller; Kristin N Ray Journal: Patient Date: 2019-04 Impact factor: 3.883
Authors: Christiaan Gmelig Meyling; Olaf Verschuren; Ingrid R Rentinck; Raoul H H Engelbert; Jan Willem Gorter Journal: Dev Med Child Neurol Date: 2021-07-26 Impact factor: 4.864