 Communication disability in hospital: Tangible and Intangible aspects of the communicative environment for adults with developmental disability Authors: Bronwyn Hemsley, Susan Balandin, Linda Research Funded by the National Health and Medical Research Council, Australia Paper presented at: THE WORLD REPORT ON DISABILITY: IMPLICATIONS FOR ASIA AND THE PACIFIC Symposium hosted by the University of Sydney in collaboration with the World Health Organization (WHO) Sydney University 5 th and 6 th December 2011

Communication Disability  The World Health Organisation (WHO) World Report on Disability (WHO, 2011) calls for research on the needs, barriers to general health care, and health outcomes for people with specific disabilities and to include people with disabilities in research on general health care services.  To date, research on health communication and experiences in clinical settings typically excludes participants with communication disability.

Research challenges Research Participation Prevalence? Scope of disability Modality of communication Type of Communication Contexts and Settings

‘Communication in Hospital’ Research Participation Estimated 2% of Hospital Population Severe Communication Disability Communicating by AAC, not speech Interpersonal Communication, AT, Needs, Roles, Barriers & Facilitators Acute Care Setting

Results

Communication Needs People with disability and no speech reported valuing the opportunity to ask about their care and wanted to know what would happen to them, including discharge planning. needed to communicate about information on their health or for emotional or social closeness -- these needs are often intangible Tools: to support ‘the Big 5’: pain and basic physical states (hunger/thirst, comfort/position, nausea, hot/cold) … [high salience]

‘Time’: Environmental Factor The time taken to communicate - can be measured externally, but is also a ‘perceptual’ in communicative interactions.

Communication Partners  Working relationships and role negotiation  Differences in the views of communication partners on the person with disability’s need to communicate.  Most paid carers viewed that the person with disability would have little need to communicate as they could rely on the carer to speak on their behalf.  Confidence of hospital staff in interacting with people with no speech, people with disability  Competence: knowledge, experience, and skills in adapting communication to suit communicatively vulnerable populations

Interventions aimed at ICF environmental factors affecting communication  New policies to support enhancing the communication environment  Access to tools (and adaptive strategies),  Add time with adaptive strategies to support successful communication  Clarify role of paid carers particularly in communication support  Prepare the person with communication disability for communication  Intervene on the many factors of effective communication  Training and practice guidelines for clinical staff and people with disability and their caregivers Checklists and audit materials relating to communicative environments and accessibility of all clinical settings

Future Research - Be inclusive of people with the range of ‘communication vulnerability’ and ‘severe communication disability’  full communicative accessibility - Participation requires access to AT / communication supports to take part in research (and researcher skills). - Research into better communication tools, and the communication partner skills and strategies. - Research into ‘what will make a substantial difference’ to safety, quality, and satisfaction for people with communication disability in healthcare settings.