Parents particularly identified gaps in inter-professional communication between (rehabilitation) hospitals and primary care settings. Involved professionals recognized these gaps and primarily attributed them to organizational factors. Improvement initiatives should focus on these factors as well as facilitation of low-threshold contact across the patient's care network.
IntroductionTo improve communication in the integrated care setting of children with cerebral palsy, we developed a web-based system for parent-professional and inter-professional communication. The present study aimed to evaluate parents’ experiences regarding the system’s contribution to their communication with professionals during a six-months pilot in three Dutch care regions. In addition, factors associated with parents’ system use and non-use were analyzed.Theory and methodsThe system’s functional specifications were based on key elements of the Chronic Care Model and quality dimensions formulated by the Institute of Medicine. At baseline, parents completed a T0-questionnaire on their experiences regarding sufficiency of contact, accessibility of professionals, timeliness of information exchange, consistency of information and parents’ role as messenger of information and/or care coordinator. After the pilot, parents completed a T1-questionnaire on their experiences regarding the system’s contribution to each of these aspects.ResultsOf the 30 participating parents 21 had used the system, of which 20 completed the T1-questionnaire. All these parents indicated that they had experienced a contribution of the system to parent-professional communication, especially with respect to accessibility of professionals, sufficiency of contact and timeliness of information exchange, and to a lesser extent consistency of information and parents’ messenger/coordinator role. In comparison with non-users, users had less positive baseline experiences with accessibility and a higher number of professionals in the child’s care network.ConclusionsAll users indicated a contribution of the system to parent-professional communication, although the extent of the experienced contribution varied considerably. Based on the differences found between users and non-users, further research might focus on the system’s value for complex care networks and problematic access to professionals.
By combining methods, the presented approach aims to minimize limitations inherent to the application of single methods. The comprehensiveness of the approach enables its applicability in various integrated care settings. Its sequential design allows for in-depth evaluation of relevant quality gaps. Further research is needed to evaluate the approach's feasibility in practice. In our subsequent study, we present the results of the approach in the integrated care setting of children with Cerebral Palsy in three Dutch care regions.
We developed a secure, web-based system for parent-professional and inter-professional communication. The aim was to improve communication in the care of children with cerebral palsy. We conducted a six-month trial of the system in three Dutch health-care regions. The participants were the parents of 30 cerebral palsy patients and 120 professional staff involved in their care. Information about system usage was extracted from the system's database. The experience of the parents and professionals was evaluated by a questionnaire after six months. The system proved to be technically robust and reliable. A total of 21 parents (70%) and 66 professionals (55%) used the system. The parents submitted 111 questions and 59 responses, with a mean of 5 questions (range 1-17) and 3 responses (range 1-9) per parent. The professionals submitted 79 questions and 237 responses, with a mean of 2 questions (range 1-8) and 4 responses (range 1-23) per professional. Most parents (95%) and some professionals (30%) reported value in using the system, which ranged from efficiency and accessibility to flexibility and transparency. The web-based communication system was technically feasible and produced improved parent-professional and inter-professional communication. It may be especially valuable if frequent interventions or consultations about a child's care are required, involving complex care networks of different professionals and organisations.
Even the most determined optimists among us cannot deny we are living in dark times, with raging wars and the effects of climate change upon us. A pandemic has left us feeling uncertain about our futures, polarization has pressured social discourse. Our assumptions of the future are being challenged: even what we took for granted now seems uncertain. And instead of asking: how did we get here? We are left with the question: what made us think we would never get here? If the unimaginable suddenly becomes a reality, then what is left to imagine? Is it still worth being hopeful? It appears that we are not only suffering from the poverty of imagination, but also from the poverty of hope. But what if imagination and hope are inherently connected? In this essay we propose that we cannot be hopeful without rethinking our images of the future, in which imagining the impossible turns out to become a necessity: a radical act of hope.
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