Crossing boundaries: improving communication in cerebral palsy care

Jitske Gulmans

Research output: ThesisPhD Thesis - Research UT, graduation UT

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Abstract

In the Netherlands, children with cerebral palsy are the largest diagnostic group treated in paediatric rehabilitation, requiring specialized health-, education- and social services of multiple professionals from diverse organizations. To provide ‘integrated care’ in these settings, effective care coordination is essential, though in practice this is challenged by inadequate communication across the child’s care network. In order to improve communication across the integrated care setting of cerebral palsy, the present study aimed to (i) identify experienced gaps in parent-professional and inter-professional communication in three Dutch cerebral palsy care regions; and (ii) obtain insight in the feasibility and usability of an ‘eHealth’-application as a potential improvement strategy for the identified gaps in communication in each care region. To identify experienced gaps in communication a mixed method approach attuned to integrated care settings was developed and applied in each care region. Parents primarily experienced gaps in inter-professional communication, ranging from lack of cooperation and patient-centeredness to insufficient information-exchange and consistency of information. Consequently, parents had to take up the role of messenger of information and/ or care coordinator. Involved professionals recognized these gaps and primarily attributed them to capacity problems, lack of interdisciplinary guidelines and a clear definition of roles, tasks and responsibilities. Based on these gaps an asynchronous secure web-based system for parent-professional and inter-professional communication was developed, aimed to increase patient centeredness, facilitate inter-professional contact and enhance network transparency. A 6-month pilot evaluation in each care region showed broad variation in frequency of system use and its experienced added value, which was related to users’ actual consultation needs and the complexity of the child’s care network. The system’s technical feasibility and added value, although more pronounced for parents than professionals, merit further research into its effective implementation for those patients who require frequent consultation across various organizations and settings. In addition, further development of the technology should focus on incorporating advanced consultation options, next to increasing the system’s ease of use and its integration into daily care practice. This requires an interactive process of co-creation with relevant stakeholders, in order to realize a ‘fit-for-all’ service tailored to specific user needs.
Original languageEnglish
Awarding Institution
  • University of Twente
Supervisors/Advisors
  • van Harten, Willem H., Supervisor
  • Vollenbroek-Hutten, Miriam Marie Rosé, Supervisor
  • van Gemert-Pijnen, Lisette J.E.W.C., Co-Supervisor
Thesis sponsors
Award date17 Feb 2012
Place of PublicationEnschede
Publisher
Print ISBNs9789036533058
DOIs
Publication statusPublished - 17 Feb 2012

Keywords

  • BSS-Biomechatronics and rehabilitation technology

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