Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician

被引：12

作者：

Alsem, Mattijs W. ^{[1
,2
,3
]}

Verhoef, Marjolein ^{[1
,2
,4
]}

Braakman, Jessica ^{[1
,2
]}

van Meeteren, Karen M. ^{[1
,2
]}

Siebes, Renate C. ^{[1
,2
]}

Jongmans, Marian J. ^{[5
,6
]}

Visser-Meily, Johanna M. A. ^{[1
,2
,4
]}

Ketelaar, Marjolijn ^{[1
,2
]}

Klem, M. ^{[7
]}

Medema-Meulepas, T. W. J. M. ^{[2
]}

Kuijper, M. A. ^{[2
]}

van der Steen, I. A. ^{[2
]}

Bernink, I. ^{[2
]}

van Tol, M. ^{[2
]}

Kolk, E. ^{[2
]}

van der Vossen, S. ^{[2
]}

Bakker, N. ^{[8
]}

Staijen, S. ^{[8
]}

Stoelinga, F. ^{[3
]}

van Beek, K.

Titulaer, A. F. ^{[9
]}

Piskur, B. ^{[10
]}

机构：

[1] Univ Med Ctr Utrecht, Brain Ctr Rudolf Magnus, Ctr Excellence Rehabil Med, Utrecht, Netherlands

[2] Univ Utrecht, Hoogstr Rehabil, Utrecht, Netherlands

[3] Univ Amsterdam, Med Ctr, Dept Rehabil Med, AMC, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands

[4] Univ Utrecht, Univ Med Ctr Utrecht, Brain Ctr Rudolf Magnus, Dept Rehabil Phys Therapy Sci & Sports, Utrecht, Netherlands

[5] Univ Utrecht, Fac Social & Behav Sci, Dept Educ & Pedag, Utrecht, Netherlands

[6] Univ Med Ctr Utrecht, Wilhelmina Childrens Hosp, Dept Neonatol, Utrecht, Netherlands

[7] BOSK Assoc Persons Congenital Phys Handicaps, Utrecht, Netherlands

[8] Rehabil Ctr Merem, Dept Paediat Rehabil, Huizen, Netherlands

[9] Rijndam Rehabil, Dept Paediat Rehabil, Rotterdam, Netherlands

[10] Zuyd Univ Appl Sci, Fac Hlth, Res Ctr Auton & Participat, Heerlen, Netherlands

来源：

CHILD CARE HEALTH AND DEVELOPMENT | 2019年 / 45卷 / 05期

关键词：

consultation; family; centred care; family empowerment; information; paediatric rehabilitation; PATIENT EMPOWERMENT; CEREBRAL-PALSY; CHILDREN; VALIDATION; DISABILITIES; EFFICACY; FAMILIES; FATHERS; MOTHERS; NEEDS;

D O I：

10.1111/cch.12700

中图分类号：

B844 [发展心理学（人类心理学）];

学科分类号：

040202 ;

摘要：

Background To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. Methods In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed. Results Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture. Conclusion Using the WWW-roadmap prior to consultation did not improve self-efficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.

引用

页码：623 / 636

页数：14

共 27 条

[11] Informing and Equipping Parents of People With Intellectual and Developmental Disabilities [J].