Communication disability in hospital: tangible and intangible aspects of the communicative environment for adults with developmental disability.

http://sydney.edu.au/health_sciences/disability-symposium/resources.shtml

 

 

Permission has been granted by the University of Sydney conference organisers to publish this abstract on my blog.

Acknowledgements: This study was funded by the National Health and Medical Research Council of Australia, through a postdoctoral fellowship to the first author. The authors would like to acknowledge and thank organisations assisting with recruitment and participants for contributing their views and experiences to this study.

  • Hemsley, B., Balandin, S., & Worrall, L. (2011). Communication disability in hospital: tangible and intangible aspects of the communicative environment for adults with developmental disability. Paper presented at the World Report on Disability: Implications for Asia and the Pacific, Symposium organised by The University of Sydney and the World Health Organization, 5-6 Dec 2011, Sydney Australia.

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. In this study we examined the views of adults with cerebral palsy and complex communication needs (n = 15), paid carers (n = 15), and hospital nurses (n = 15) on communication in hospital and barriers to and facilitators for effective communication to improve care. In-depth narrative interviews explored situations where communication was successful or unsuccessful and the impact of this upon care. Participants highlighted various methods of communication and a range of environmental factors (ICF, 2001) to communication, including the time taken to communicate, and the use of aids and equipment for communication. Intangible aspects of the environment included working relationships and role negotiation between paid carers and hospital staff, and differences in the views of communication partners on the person with disability’s need to communicate. Although all participants agreed it was important to communicate about pain and basic physical states (hunger, thirst, comfort, position, nausea, hot, cold) there was little acknowledgement that people with disability also needed to communicate about information on their health or for emotional or social closeness during hospitalisation.  Most paid carers in the study viewed that the person with disability would have little need to communicate as they could rely on the carer to speak on their behalf. However, 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. Without attention to the interaction patterns of communication partners, provision of communication aids alone might not be sufficient to remove barriers to communication and improve care for people with communication disability in hospital.

REFERENCES:

Title: The “Big 5” and beyond: Nurses, paid carers, and adults with developmental disability discuss communication needs in hospital
Author(s): Hemsley, B.; Balandin, S.; Worrall, L.
Source: Applied Nursing Research Volume: Early view online. Retrieved from http://www.appliednursingresearch.org/inpressabstract is on: http://espace.library.uq.edu.au/view/UQ:238879

Title: Time: ‘Enemy’ or ‘friend’ for nurses communicating with patients with developmental disability and complex communication needs
Author(s): Hemsley, B.; Balandin, S.; Worrall, L.
Source: J Adv Nurs. 2011 Aug 10. doi: 10.1111/j.1365-2648.2011.05722.x. [Epub ahead of print]

Nursing the Patient With Developmental Disability in Hospital: Roles of Paid Carers

Author(s): Hemsley, B.; Balandin, S.; Worrall, L.

Source: Qualitative Health Research http://qhr.sagepub.com/content/21/12/1632

Read the World Report on Disability here: http://www.who.int/disabilities/world_report/2011/en/index.html

Online surveys and AAC research

When I see a link in social media to an online survey, I always check for an ‘information sheet’ present as either the first step in the survey, or as a separate link.

In relation to AAC research, I have an interest in research methodology relating to participation by people who use AAC and their families in the online world. For any online survey that is research into AAC, I look for an information sheet and consent statement, before proceeding to assist in recruitment by distributing the link to the info/survey on Twitter.  I like to get the online original source of the information – to be informed by the researchers –  rather than third party reports (e.g., other facebook pages that show the information).

If it is for myself, I can email the researchers and ask for the information sheet, so an email contact and researcher name/institution is useful. If I am distributing information about an online survey via Twitter or Facebook to others, I aim to distribute both the original information site link and the online survey site link before disseminating for recruitment. This is because participants need good access to the information sheet in order to participate with ‘informed consent’. I can understand other people not going to these lengths, but it is a preference of mine to do so. Ideally, researchers might start using online survey tools that enable them to have a ‘start up’ page that presents the information sheet to the participant before they enter the survey start page. This would reduce the need to click twice or risk separating the process of informed consent from the participation online.

It is important that people with communication disabilities are included more frequently in health and social research, as they are often excluded on the basis of being unable to speak, and/or read, and/or write. Their views, experiences, and preferences gathered in online surveys will be of great value to improving systems, policies, and services in the future. Even though the risks might be small, they are present – research in the field of AAC reveals a lot about a person’s communication that can identify them to people who know them and who read about the research. It is for this reason that the information sheet for participants is worthy of close reading, and important in the dissemination of links to online surveys.