Parents' experiences and needs regarding physical and occupational therapy for their young children with cerebral palsy

被引:49
作者
Kruijsen-Terpstra, Anne J. A. [1 ,2 ,3 ,4 ]
Verschuren, Olaf [1 ,2 ,3 ,4 ]
Ketelaar, Marjolijn [1 ,2 ,3 ,4 ]
Riedijk, Larisa [5 ]
Gorter, Jan Willem [4 ,6 ]
Jongmans, Marian J. [4 ,7 ,8 ]
Boeije, Hennie [9 ]
机构
[1] Univ Med Ctr Utrecht, Brain Ctr Rudolf Magnus, Rembrandtkade 10, NL-3583 TM Utrecht, Netherlands
[2] Univ Med Ctr Utrecht, Ctr Excellence Rehabil Med, Rembrandtkade 10, NL-3583 TM Utrecht, Netherlands
[3] De Hoogstraat Rehabil, Rembrandtkade 10, NL-3583 TM Utrecht, Netherlands
[4] Partner NetChild, Network Childhood Disabil Res Netherlands, Utrecht, Netherlands
[5] Univ Utrecht, Fac Social Sci, Dept Methodol & Stat, POB 80140, NL-3508 TC Utrecht, Netherlands
[6] McMaster Univ, CanChild Ctr Childhood Disabil Res, 1400 Main St West, Hamilton, ON L8S1C7, Canada
[7] Wilhelmina Childrens Hosp, Univ Med Ctr Utrecht, Dept Neonatol, Utrecht, Netherlands
[8] Univ Utrecht, Fac Social Sci, Dept Child Family & Educ Studies, POB 80140, NL-3508 TC Utrecht, Netherlands
[9] NIVEL Netherlands Inst Hlth Serv Res, POB 1568, NL-3500 BN Utrecht, Netherlands
关键词
Parents; Cerebral palsy; Experiences; Physical and occupational therapy; Empowerment; PRESCHOOL-CHILDREN; QUALITATIVE RESEARCH; PERCEPTIONS; EMPOWERMENT; PREVALENCE; PROGRAMS; MOTHERS; CARE;
D O I
10.1016/j.ridd.2016.02.012
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
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. (C) 2016 Elsevier Ltd. All rights reserved.
引用
收藏
页码:314 / 322
页数:9
相关论文
共 31 条
[1]   Assessment of family needs in children with physical disabilities: development of a family needs inventory [J].
Alsem, M. W. ;
Siebes, R. C. ;
Gorter, J. W. ;
Jongmans, M. J. ;
Nijhuis, B. G. J. ;
Ketelaar, M. .
CHILD CARE HEALTH AND DEVELOPMENT, 2014, 40 (04) :498-506
[2]   Family-Centered Care [J].
Arango, Polly .
ACADEMIC PEDIATRICS, 2011, 11 (02) :97-99
[3]  
Boeije H., 2010, Analysis in qualitative research
[4]  
Braun V., 2011, Qualitative Research in Psychology, V3, P77, DOI DOI 10.1191/1478088706QP063OA
[5]   QUALITATIVE RESEARCH .4. QUALITATIVE INTERVIEWS IN MEDICAL-RESEARCH [J].
BRITTEN, N .
BRITISH MEDICAL JOURNAL, 1995, 311 (6999) :251-253
[6]   Are family-centred principles, functional goal setting and transition planning evident in therapy services for children with cerebral palsy? [J].
Darrah, J. ;
Wiart, L. ;
Magill-Evans, J. ;
Ray, L. ;
Andersen, J. .
CHILD CARE HEALTH AND DEVELOPMENT, 2012, 38 (01) :41-47
[7]   The qualitative research interview [J].
DiCicco-Bloom, B ;
Crabtree, BF .
MEDICAL EDUCATION, 2006, 40 (04) :314-321
[8]   Trends in the prevalence of cerebral palsy in Northern Ireland, 1981-1997 [J].
Dolk, Helen ;
Parkes, Jackie ;
Hill, Nan .
DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY, 2006, 48 (06) :406-412
[9]   Physician-family partnerships: The adaptive practice model [J].
Feldman, HM ;
Ploof, D ;
Cohen, WI .
JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS, 1999, 20 (02) :111-116
[10]   The relevance of family-centred medicine and the implications for doctor education [J].
Gorter, Jan W. ;
Visser-Meily, Anne ;
Ketelaar, Marjolijn .
MEDICAL EDUCATION, 2010, 44 (04) :332-334