ACQ Vol 12 No 3 2010

Accessible healthcare

Around the journals

prefer interacting with the carers rather than attempting to communicate with the adult patient who could not speak. Overall, the article highlights the potential role of speech pathologists in facilitating communication for people with CCN in hospital. Future research is indicated to explore the potential for hospital staff education in the area of CNN and AAC systems, and in the development of policies and procedures for people with disability in the hospital, including aspects such as pre-admission planning, involvement of paid disability support staff, availability of adapted equipment, and improved discharge planning. Leading by example: Communication access at Connect, UK Parr, S., Pound, C., & Hewitt, A. (2006). Communication access to health and social services. Topics in Language Disorders , 26 (3), 189–198. Pound, C., Duchan, J., Penman, T., Hewitt, A., & Parr, S. (2007). Communication access to organisations: Inclusionary practices for people with aphasia. Aphasiology , 21 (1), 23–38. Kyla Brown Communication access is an essential ingredient for an inclusive society. This is a key message of these two articles describing initiatives for improving communication access undertaken by the voluntary sector organisation for people with aphasia, Connect – The Communication Disability Network, located in the UK (www.ukconnect.org). In the first article, “Communication access to organisations: Inclusionary practices for people with aphasia” the authors describe how they have addressed communication access within their own service. They describe the communication support methods used to implement projects for people with aphasia in the roles of 1) recipients of services, 2) co-facilitators of services, 3) as trainers in courses for service providers, and 4) as employees within Connect. In each instance different levels and layers of communication support are detailed. A useful table is included, which gives examples of materials used to support communication access and lists some of the behind-the-scenes processes involved. The authors note that in order to provide communication access that promoted authentic involvement, they needed to spend more time and work “around the edges”, for example, in preparing support materials (Pound et al., 2007, p. 35). However, they argue that the additional time and resources have provided individuals with aphasia increased confidence and opportunities to demonstrate their competence, and led to many improvements in Connect services. The article also discusses some of the challenges Connect faced in order to improve user inclusion and access. These included: resistance to change, using time differently (through reflecting on priorities and reallocating time and resources), the need for new skills and creativity, and revising

Hospital experience for older parents of people who cannot speak Hemsley, B., Balandin, S., & Togher, L. (2007). Narrative analysis of the hospital experience for older parents of people who cannot speak. Journal of Aging Studies , 21, 239–254. Nerina Scarinci Caring for a child with cerebral palsy and complex communication needs (CCN) is a lifelong commitment for parents, and when there is a need for hospitalisation their role as carer extends to this environment. Although there is a plethora of research available on the experiences of parents of children with developmental disability in hospital, there is little information regarding the needs and experiences of older parents who care for their adult dependants in hospital. This study fills a gap in the literature by investigating the experiences of older parents in supporting their adult child with cerebral palsy and CCN in hospital. Eight parents aged 60 years and older participated in individual in-depth interviews about their roles in hospital and the impact of caring for their adult son or daughter on their own health and well-being. These participants provided care for their son or daughter in hospital for extended periods of time, ranging from 10 to 77 days, with an average of 30.5 days. Most participants spent the majority of the day in hospital providing care, being present either 24 hours per day or from early morning until late at night. Clearly, participants had a high level of commitment to providing care for their adult son or daughter, despite the presence of nursing staff. Analysis of the interviews identified a common narrative in the hospital care experience and a several areas for improvement were suggested by participants so that the hospital experience could be better for all involved. Participants discussed a number of areas relating to their hospital experiences including: their history in providing care for their child in hospital, admission procedures and their imperative to care, the communication difficulties faced by their dependent child in hospital, the negotiated process of care when working with hospital staff, being an advocate for their child in hospital, and the challenges of transition from hospital back into the community. Of significance to speech pathologists are the reported communication difficulties of the adult with CCN during the hospital stay. Parents noted that as their adult children did not have any functional speech, when they were not present to assist with communication, their sons and daughters were not able to communicate with hospital staff. Participants also perceived that the hospital staff did not have enough knowledge or experience in working with adults with disability, and staff were unwilling or unable to take instruction directly from the adult with cerebral palsy. Despite assurances for the parent carers that their adult child was able to understand speech, staff appeared to

150

ACQ Volume 12, Number 3 2010

ACQ uiring knowledge in speech, language and hearing