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
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
收藏
页码:623 / 636
页数:14
相关论文
共 27 条
[1]   Follow-up effects of a tailored pre-counseling website with question prompt in breast cancer genetic counseling [J].
Albada, Akke ;
van Dulmen, Sandra ;
Spreeuwenberg, Peter ;
Ausems, Margreet G. E. M. .
PATIENT EDUCATION AND COUNSELING, 2015, 98 (01) :69-76
[2]   Co-creation of a digital tool for the empowerment of parents of children with physical disabilities [J].
Alsem M.W. ;
van Meeteren K.M. ;
Verhoef M. ;
Schmitz M.J.W.M. ;
Jongmans M.J. ;
Meily-Visser J.M.A. ;
Ketelaar M. .
Research Involvement and Engagement, 3 (1)
[3]   Information seeking by parents of children with physical disabilities: An exploratory qualitative study [J].
Alsem, M. W. ;
Ausems, F. ;
Verhoef, M. ;
Jongmans, M. J. ;
Meily-Visser, J. M. A. ;
Ketelaar, M. .
RESEARCH IN DEVELOPMENTAL DISABILITIES, 2017, 60 :125-134
[4]   Patient empowerment: Myths and misconceptions [J].
Anderson, Robert M. ;
Funnell, Martha M. .
PATIENT EDUCATION AND COUNSELING, 2010, 79 (03) :277-282
[5]   ASSESSING NEEDS OF FAMILIES WITH HANDICAPPED INFANTS [J].
BAILEY, DB ;
SIMEONSSON, RJ .
JOURNAL OF SPECIAL EDUCATION, 1988, 22 (01) :117-127
[6]   What Is the Future of Family Outcomes and Family-Centered Services? [J].
Bailey, Donald B. ;
Raspa, Melissa ;
Fox, Leslie C. .
TOPICS IN EARLY CHILDHOOD SPECIAL EDUCATION, 2012, 31 (04) :216-223
[7]  
Braun V., 2006, QUAL RES PSYCHOL, V3, P77, DOI [10.1191/1478088706qp063oa, 10.1191/147 88088706qp063oa, DOI 10.1191/14788088706QP063OA]
[8]   Measure of Processes of Care: a review of 20 years of research [J].
Cunningham, Barbara J. ;
Rosenbaum, Peter L. .
DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY, 2014, 56 (05) :445-452
[9]   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
[10]   Patient Empowerment and its neighbours: Clarifying the boundaries and their mutual relationships [J].
Fumagalli, Lia Paola ;
Radaelli, Giovanni ;
Lettieri, Emanuele ;
Bertele', Paolo ;
Masella, Cristina .
HEALTH POLICY, 2015, 119 (03) :384-394