Box 1.
Integrated care for children with cerebral palsy
| Cerebral palsy is one of the most severe chronic disabilities in childhood, often making strong demands on health, education and social services as well as on families and children themselves [12]. In The Netherlands, children with cerebral palsy are the largest diagnostic group treated in paediatric rehabilitation [13], with a prevalence ranging from 1.5 to 2.5 per 1000 live births with little or no variation among Western nations [14, 15]. Cerebral palsy has usually been defined as an umbrella term covering a group of motor disorders caused by a non-progressive lesion of the immature brain [16]. More recently, activity limitation was added as conditional feature and an annotation was made that the motor disorders are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems [17]. As no two children are affected in the same way, individual treatment programs vary widely, presenting care providers with heterogeneous and complex diagnostic and therapeutic challenges, requiring a broad range of specialized services from various professionals across diverse institutions and settings [18]. Although one of the primary aims in such interdisciplinary and -organizational settings is to provide integrated care, a study on integrated paediatric services in The Netherlands concluded that despite the fact that family-centered and coordinated care are seen as the two most desirable and effective ways of paediatric care delivery, their practical implementation in Dutch paediatric practice is still in a preliminary stage [19]. In line with this, a descriptive quality inventory of cerebral palsy care in The Netherlands identified suboptimal communication across institutions and settings as one of the main gaps in care coordination [20]. In view of these challenges, the overall aim of our study is to contribute to the improvement of patient care communication across the integrated care setting of cerebral palsy in three Dutch care regions. |
Box 2.
Improving communication in cerebral palsy care
| To identify experienced gaps in communication across the integrated care setting of cerebral palsy, we searched the literature for appropriate research methodology. Existing methods though were often restricted to only one aspect of communication (e.g. discharge- or referral communication), one communication link (e.g. general practitioner–hospital specialist) or one evaluation perspective (e.g. the perspective of primary care physicians), or relied solely on quantitative-resp. qualitative methods, thus obtaining either general/population based data or in-depth qualitative data derived from small samples [28]. In view of these shortcomings, we developed a mixed method evaluation approach [28], based on key elements of the Chronic Care Model [6, 29], quality of care aspects formulated by the Institute of Medicine [4] and essential quality dimensions of information(-exchange) [30]. Application of this approach in three Dutch cerebral palsy care regions [21] showed that parents primarily experienced gaps in inter-professional communication, particularly between the (rehabilitation) hospital and primary care physiotherapy resp. (special) education/day care centre. Subsequent in-depth interviews with a subset of parents showed that the experienced gaps were primarily related to inadequate cooperation of professionals and an experienced lack of patient-centeredness, as well as insufficient inter-professional information-exchange and consistency of information, which often necessitated parents to take up the role of messenger of information or even that of care coordinator [21]. Confronting professionals with these findings yielded further understanding of underlying factors, such as capacity problems and a lack of interdisciplinary guidelines and clear definition of roles, tasks and responsibilities [21]. Based on these gaps in communication, we developed an asynchronous secure web-based system for parent-professional and inter-professional communication, aimed at increasing patient centeredness, facilitating inter-professional contact and enhancing network transparency [31]. For each of these aims, functional specifications were formulated, which were subsequently translated into technical requirements (see Appendix). Based on the findings of a six-month pilot-evaluation in three Dutch care regions, the system proved to be technically robust and reliable [31]. Approximately two-thirds of the parents and half of the professionals had used the system, of which most parents and some professionals reported to have experienced added value in its use [31], comprising each of the three system aims: patient-centeredness (parents could ask questions at the moment they arose and the whole network could be reached at once, avoiding fruitless phone calls), inter-professional contact (lower threshold for consultation, contact with disciplines which previously were not actively involved in decision making) and network transparency (professionals were being kept up to date between visits, obtaining insight about other professionals’ advice; parents could re-view their communication with professionals) [31]. |
Table 2.
Overview of feedback-responsible professionals in parents’ submitted questions (n=111).
| Questions | ||||
|---|---|---|---|---|
| n | % | |||
| Care region | Region A (urban) | 34 | 31 | |
| Region B (urban/rural) | 16 | 14 | ||
| Region C (rural) | 61 | 55 | ||
| Institution | Hospital | 27 | 24 | |
| Rehabilitation centre | 48 | 43 | ||
| (Special) education/day care centre | 19 | 17 | ||
| Primary care centre | 17 | 15 | ||
| Discipline | Medical | 49 | 44 | |
| Paramedical | 51 | 46 | ||
| Educational | 11 | 10 | ||
| Medical | Rehabilitation physician | 45 | 41 | |
| Paediatrician | 3 | 3 | ||
| Paediatric neurologist | 1 | 1 | ||
| Paramedical | Physiotherapist | 22 | 20 | |
| Occupational therapist | 15 | 14 | ||
| Manufacturer rehabilitation aids | 5 | 5 | ||
| Speech therapist | 2 | 2 | ||
| Social work | 2 | 2 | ||
| Orthoptist | 2 | 2 | ||
| Pedagogue | 1 | 1 | ||
| Dietician | 1 | 1 | ||
| Creative therapist | 1 | 1 | ||
| Educational | Teacher | 8 | 7 | |
| (Ambulant) supervisor | 2 | 2 | ||
| Group leader (day care) | 1 | 1 | ||
Table 3.
Parents' responses regarding the experienced contribution of the system to sufficiency of contact (s), accessibility of professionals (a) and timelinesss of information exchange (t)
Appendix Table X1.
System aims and corresponding functional specifications and technical requirements [31]
