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A web-based communication system for integrated care in cerebral palsy: experienced contribution to parent-professional communication
- Authors:
- GULMANS Jitske, et al
- Journal article citation:
- International Journal of Integrated Care, 12(1), 2012, Online only
- Publisher:
- International Foundation for Integrated Care
In their previous work with children with cerebral palsy the authors identified gaps in communication, such as; inadequate cooperation between professionals and a lack of patient-centeredness such that parents needed to become messengers of information and/or care coordinators. A web-based system for parent-professional and inter-professional communication was developed for use in integrated care settings for these children. Parents’ experiences with the system and the contribution it made to their communication with professionals were examined during a six-month pilot in three Dutch care regions. The system’s functional specifications were based on the Chronic Care Model and quality dimensions formulated by the Institute of Medicine. Parents completed a baseline questionnaire on their experiences regarding sufficiency of contact, accessibility of professionals, timeliness of information exchange, consistency of information and their role as messenger of information and/or care coordinator. Of the 30 participating parents, 20 had used the system and completed a follow up questionnaire. Although experiences varied considerably, the parents saw improvements in 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. Non-users had less positive baseline experiences with accessibility and a higher number of professionals in the child’s care network.
Having their say: email interviews for research data collection with people who have verbal communication impairment
- Author:
- ISON Nicole L.
- Journal article citation:
- International Journal of Social Research Methodology, 12(2), April 2009, pp.161-172.
- Publisher:
- Taylor and Francis
In-depth interviewing research methods traditionally rely upon face-to-face or telephone conversation between investigator and participant. Participation of people with verbal communication impairments has often been restricted in research studies using these methods; their stories have all too frequently been left unheard or told by proxies. This paper describes the use of email interviewing to rectify this gap and facilitate research participation by people with impaired verbal communication. Issues related to this method are detailed using literature, previous scholarship and the author's research that explored the experience of people aged 18-25 years who have cerebral palsy. Recruitment, informed consent, rapport development, data collection, storage and analysis techniques are described. Benefits and potential limitations of email interviews for both participant and researcher are identified. Offering an alternative to traditional verbal interviews can increase opportunities for participant involvement and enhance the quality and inclusiveness of research data.