Supporting communication for children with cerebral palsy in hospital: Views of community and hospital staff

Abstract

ObjectiveWe aimed to investigate the views of allied health and nursing staff on supporting the communication of children with cerebral palsy (CP) and complex communication needs (CCN) in hospital.MethodWe conducted 12 focus groups with 49 community- and hospital-based allied health professionals and hospital nurses.ResultsParticipants reported having active roles in supporting children’s seating, mobility, equipment, mealtime management and psychosocial needs, but not in supporting the children’s communication in hospital. Participants described several environmental barriers to supporting children’s augmentative and alternative communication (AAC) in hospital, and suggested a range of strategies to ease communication difficulties at the bedside.ConclusionResults indicate a potential new role for community- and hospital-based health professionals in supporting nurses to implement AAC strategies at the bedside. Supporting nursing staff to remove environmental barriers and use communication technologies might create a more communicatively accessible hospital ward for children with CP and CCN.

Parental satisfaction with inpatient care of children with cerebral palsy

“…Simple strategies, such as improving communication between staff and parents/patients, should also be implemented to ensure adequate care in the hospital. A recent study suggested that expanding the roles of hospital‐based speech pathologists and occupational therapists to assist patients, families and other health‐care staff with the communication needs of children with CP would be beneficial . These allied health professionals could communicate with their community‐based colleagues and conduct short, functional assessments of each child to determine their communication means .…”

“…A recent study suggested that expanding the roles of hospital‐based speech pathologists and occupational therapists to assist patients, families and other health‐care staff with the communication needs of children with CP would be beneficial . These allied health professionals could communicate with their community‐based colleagues and conduct short, functional assessments of each child to determine their communication means . Further improving hospital facilities with more widely available specialised equipment for children with CP and other disabilities would be helpful.…”

Understanding the rejection and abandonment of augmentative and alternative communication systems by parents of children with complex communication needs

“…This hesitation was exemplified by a SLP reflecting on the comments of a teacher who said that "maybe next year he'll find a teacher who is more interested" in programming and training the student to use AAC (Lindsay, 2010, p. 215). AAC use was however reportedly supported by professionals who held realistic goals and expectations, did not make assumptions, viewed the systems as beneficial, and were dedicated to supporting communication development (De Bortoli et al, 2014;Donato, Shane, & Hemsley, 2014;Hemsley et al, 2014;Lund & Light, 2007). For example, one parent described the benefits of working with "very dedicated augmentative communication professionals that had a vision and then had incredible dedication and commitment" to finding out how her son was going to communicate (Lund & Light, 2007, p. 330).…”

“…There were examples of professionals across all groups who were inexperienced in supporting people with complex communication needs, and who lacked time to seek the necessary training (S. Balandin et al, 2007;De Bortoli et al, 2014;Lund & Light, 2007;McKelvey, Evans, Kawai, & Beukelman, 2012;Trembath et al, 2014). Therefore, AAC systems that required the communication partner to have particular skills (e.g., understanding sign language, knowledge of idiosyncratic movements, or using auditory scanning) were not able to be used without a trained communication partner present (Hemsley et al, 2013;Hemsley et al, 2014;Martin et al, 2012). For example, one parent noted that she always had her child's communication book at hospital "but staff are not always keen on using it .…”

“…Within the health system, AAC use was influenced by factors such as the availability of AAC systems, the available time of the nurse, and the continuity of nurses allocated to a patient (Hemsley, Balandin, & Worrall, 2012;Hemsley et al, 2014;Martin et al, 2012).…”