Ideas coming from Twitter for Apps for Interaction with Adults

I asked the Twitterverse for the names of apps as ideas for inclusion in our ‘Communication Enrichment in Aphasia’ research project, run through the Communication Disability Centre at the University of Queensland. This is the resulting list! I cannot comment on any of the apps, I am just putting it here in case others want to see the responses in one place. Thanks for all of the contributors, especially @tactustherapy and @therabees who ran hot on ideas at the same time: (Apologies if the names/spelling of apps is incorrect – inclusion is not endorsement). Also, contact me if you can think of any others! Inclusion on this list does not indicate inclusion in our research – it’s just a list.

GAMES

Bejeweled, Where’s My Water, Cut the Rope Experiments
TicTacToe, Checkers, Connect4, SimonSays, TaptheFrog, PaperToss, FruitNinja, MatrixGame, Chess, Solitaire 
http://www.tactustherapy.com/other.html lists of apps
Logo Quiz
Word Games, look for word searches, 7 Little Words, Chictionary, DoodleFind, Word Shaker, DrawSomething, Scrabble
Language: MyPlayHome, More Grillin’, CookieDoodle, Conversation Cards, You’re Only Old Once, Video Time Machine
2-player: Awesome Memory, Air Hockey, Bag Game, Hangman, as well as others mentioned.

More:

footy flick, retro pinball, pipe roll, labyrinth, star walk, google earth, RTA NSW, ABC (podcasts etc), SMH online, Saving yellow
line birds, office jerk and Spark- great for conversation starters:)
sticky notes too! And I use weather from SMH

Aphasia therapy apps

http://www.asha.org/Publications/leader/2012/120605/App-titude–Apps-to-Aid-Aphasia.htm

 

Hospital staff views on communication in hospital (Children with Cerebral Palsy)

Speech Pathology Australia National Conference 24-27 June 2012

Hospital staff views on communicating with children with cerebral palsy and complex communication needs in hospital: Environmental barriers and solutions to improve communication.

Kathleen Munro (1), Nadeera Seedat (2), Kaely Bastock (3), Bronwyn Hemsley (1,3)

(1) The University of Queensland, (2) Cerebral Palsy League, QLD, (3) The University of Newcastle, Australia

The aims of this focus group study were to investigate the views of hospital staff on (a) the communication needs and methods of children with cerebral palsy (CP) and complex communication needs (CCN) in hospital, (b) their roles in supporting these children, and (c) barriers to and strategies for better communication on the ward. Participants included allied health professionals and nurses who had worked with children with CP and CCN. There was agreement across the data that children with CP and CCN in hospital need to communicate basic needs and preferences for leisure activities. Most participants reported relying upon parents to communicate with the child. Although allied health staff considered parents would be present at most times, nurses reported that this did not always occur. Barriers to the child’s use of augmentative and alternative communication (AAC) systems included lack of space at the bedside, lack of a means to store and protect a costly AAC system, and lack of staff confidence and knowledge in how the child communicated outside the hospital. One focus group of nurses reflected that barriers to the use of AAC had been removed in order to enable children to use their own AAC systems. This group reported that simple and complex high technology AAC systems were viable for use in hospital wards if environmental supports are in place. In this paper, barriers to and strategies for better communication in hospital will be presented and policy and practice implications for hospital staff discussed.

Communication Disability and Adverse Events in Hospital: Aphasia (Pilot Study)

Conference abstract accepted:

Speech Pathology Australia National Conference, Hobart, 24-27 June 2012

Adverse events in hospital as reported by adults with aphasia and their spouses: A pilot study.

Maryanne Wernincke (1), Linda Worrall (1), Bronwyn Hemsley (2)

(1) The University of Queensland; (2) The University of Newcastle

Background

Adults with communication disability have a three-fold increased risk for preventable and multiple adverse events in hospital (Bartlett et al., 2008). However, little is known about the patient safety incidents of adults with aphasia. Saxena, Ng, Yong, Fong, and Gerald (2006) found that stroke patients often experience preventable and harmful patient safety incidents, including falls and skin sores, during hospitalization. Increased duration of stay in hospital is associated with an increased risk of patient safety incidents (Andrews et al., 1997) and stroke patients who have increased duration of stay in hospital or who suffer a patient safety incident in hospital are at a higher risk of rehospitalisation (Lin, Chang, and Tseng 2011). To date, there is little information available on the experiences of adults with aphasia relating to adverse events in hospital. The aims of the study are to (a) describe the experiences of adults with aphasia secondary to stroke and their carers/family members in relation to patient safety incidents experienced in hospital since stroke, (b) identify the situations, people, events, and outcomes relevant to the patient safety incident, and (c) look for commonalities in stories of experiences that would inform the prevention or better management of patient safety in stroke patients with aphasia.

Communication in Hospital and the ICF – Results from Child and Adult Studies

International Society for Augmentative and Alternative Communication

#ISAAC2012 @ISAAC_2012 http://www.isaac2012.org Pittsburgh, USA End July 2012

Title and author details

Using the ICF as a framework to support effective communication between people with CP and CCN and their communication partners in hospital settings.

Authors: Bronwyn Hemsley, Susan Balandin, Melanie Fried-Oken, Linda Worrall.

Background

 

Effective communication in hospital is central to the provision of healthcare and is built upon interactions between the patient and the provider along with caregivers (Joint Commission, 2010). However, both children and adults with cerebral palsy (CP) and complex communication needs (CCN) struggle to communicate with staff who are not familiar with their communication needs and methods. People who use AAC do not typically take their own AAC systems to hospital, and often rely upon a third party (e.g., family member or paid caregiver) for their communication with hospital staff. Despite the availability of low technology communication aids for use in hospital, environmental barriers preventing their use persist (Hemsley et al., 2011a,b,c). An in-depth understanding of factors affecting communication in hospital according to the ICF is needed to inform the design of interventions to influence uptake and use of AAC tools made available for communication in hospital.

 

Objective:

The aim of this study was to investigate communication between children and adults with CP and CCN and their communication partners in hospital to determine: (a) common communication needs, (b) barriers to or strategies to effective communication using AAC in hospital, and (c) the roles of health professionals and carers in supporting communication and preparing for hospitalization. In this paper we will present an overview of the research findings in relation to content themes and factors within the International Classification of Functioning, Disability, & Health (ICF, WHO, 2001) to inform clinical, educational, and research directions in improving communication in hospital.

 

Publication and impact

so you have a folder on your desktop and a folder on your cupboard
with your experiences and thoughts
back when you wrote it
and your reflections on it now
writing writing writing
better writing, editing
editing, publishing
publishing, reading
reading, citing
citing, impact
impact, change
change, better
all better
best

What did you do today? I wrote this a little while ago … it seems representative still :)

There’s a lot on twitter today about #SciComs – Science Communicators. How many scientists communicate daily about what they do?

The other thing is, that the #SLPchat is soon to be about ‘what other people think you do vs what you actually do’, in the world of Speech Pathology. Should be an interesting discussion! (Sunday, mid-march, to be announced).

So I will write about what I did today, and you will get an idea of what an Early Career Researcher Academic does. In Speech Pathology.

1. Left home at 8 got a carpark at 8.30 the last one in the staff section (yes!). I like it!

2. Made a list of essential things to do today – sending off ethics forms (information sheets and consent forms WITH logos, to honours students). Top of the list. Do it then return to making the list. Remember an item called ‘librarian.’ Add it to list. Stop writing list.

3. Visit librarian, make sure readings for the courses I co-ordinate make it up to the online reading section. Photocopy exactly 10% of the book for a librarian who says it is a huge list of things to be done. I want mine online! This takes a few minutes, especially counting exactly 10%.

4. Make a budget for a grant, costing out what technology equipment/supports I want. Email potential colleague. Try to win over. Send the blank application form. Pitch the grant in an email.

5. Re-send an attachment to an email sent on Sunday that wasn’t attached. Feedback on a conference abstract due in a few days.

6. Visit clinic and make a plunger coffee – take away lines are too long on day 2, plus the coffee isn’t always hot. And strong. And yesterday it was accidentally with caramel added (ew). Meanwhile in clinic, score half a muffin (thanks!) and chat to colleagues about Twitter. Offer to do a lunchtime seminar for clinic staff. Twitter twitter twitter.

7. Return to desk for intake of daily dose for the morning. Arrange to speak to a consultant in Sydney and find out what she can do and how much it costs. She will ring me back later with the price.

8. Give feedback on method section / data collection forms for another project, to student researcher. Outline process for project management over the next 3 months. This project is going to work! you can do it!

9. Re-draft journal article and send to second author before submitting prior to grant submission. The timeline has to be right, because we want to cite it as submitted, even though it would be better I did this three months ago, and it was cited as in review or accepted. Nevertheless, better than nothing.

10. Send major grant app proposal off for final round of feedback from professors. They might or might not have time now in the final two weeks to give feedback. If I’d done this before I moved interstate changed jobs and got my boy into a new school, they would have more time, but other things happened. That’s life! Of course, finding a place to live permanently can wait until after the grant is submitted. Kinda.

11. Various items relating to – various students who seem lost and don’t know where rooms are and rely upon asking people verbally. We need a Uni map app!!

12. Put 73 students into tutorial groups. Double check the outline against the additional information sheet on blackboard. Post an announcement on blackboard that groups will be finalised after the lecture then on blackboard.

13. Introduce guest lecturer to 73 students. Kick off the semester of lectures. Drive to post-office pick up package wrongly delivered to another address. Drive back to meet lecturer.

14. Write an email responding to the consultant in Sydney. Tweet details of a conference coming up in NSW on disability. Tweet out a few blogs.

15. Come home cook dinner eat it get dessert talk to son (lol).

16. Do blackboard updating tutorial groups, do twitter, write grant plan for 2012 draft for discussion with mentor professor tomorrow morning, no need to help with homework these days, apparently there is none in this new school. Get shown the little dinky (not the word he used) laptop he now has for school, find out that the NSW school system has an address about 4 years old for us. Asked about what jobs can earn some pocket money for the night – referred to previously sent email listing jobs for each day (sent yesterday in desperation) and system for earning pocket money from jobs. He washes up then uses up some of the funds to buy 2 songs on itunes, for $3.38. He figures out this is better pay than he might get at a fast food joint if he worked that long for 15 minutes and got $3.38 straight up. This means he might never go out and get a job.

17. Put all 73 of the student names into tute groups, make an announcement that they’re all allocated. Respond to three emails from students saying stuff about Echo recording system.

A researcher’s day ideally contains

– grants, writing, reading, talking, collaborating, teaching, and learning.

I think I did a bit of all that today. That’s a typical kind of day. One thing missing – travel organising. There’s a bit of that to do, but I will leave that until tomorrow.

Where are the hospital policies on communicating with patients with little or no speech?

It is useful to provide strategies and tips to hospital staff, patients, and carers, on how to improve bedside communication for patients who do not speak. However, it is not always possible or easy for people to implement these strategies in the ‘environment’ where communication occurs, if hospital policies do not support the implementation of these strategies at the bedside.

1. Hospitals need policies on how staff are to communicate with patients who have little or no speech at all stages of the admission: Pre-admission, Admission, Inpatient Stay, Discharge Planning, and Discharge. [Note: This is not the same as policies on the use of interpreters, for ‘CALD’ or ‘Deaf’ or ‘hearing impaired’ populations – many people with little or no speech might not be from CALD populations and might have adequate hearing. Having said that, some patients have ‘overlapping’ communication vulnerabilities (e.g., CALD, and communication disability, and hearing impairment)].

2. Policy documents need to tie-in well with procedures and systems occurring at the ward level so that they are not ’empty’ policies that do not make a difference to bedside communication.

3. Hospital policy-writers can ask for help in drafting new policies from myself (email b.hemsley@uq.edu.au) and their own staff who have personal, clinical, and theoretical expertise on bedside communication for patients with little or no speech (e.g., hospital nurses, speech pathologists, patients, family carers, paid carers, administration staff).

4. Hospitals need procedures for implementing policies and auditing practices surrounding the policies as they are implemented. Behaviour change in staff (and carers, and patients) often rests upon having a way to ‘measure’ and track changes made in response to policy direction. Our research is currently looking at a way to ‘audit’ the communicative behaviours of staff, patients, and carers to track ‘behaviour’ changes that can improve care and communication.

5. Statements from recent research by the author are quoted below – to date, there is little evidence that these policies have moved from being ‘evidence’ into ‘practice’, and more recent research indicates problems in communication at the bedside persist.

POLICY ON CARE OF PATIENTS WITH LIFELONG DISABILITY: “There is also a need to develop policies about care of people with disability in the hospital including a focus on availability of adapted equipment, pre-admission planning, involvement of paid disability support staff, and improved discharge planning that involves not only the carer but also the person with CCN.” p.250 see 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 (2007) 239–254.

POLICY ON THE ROLES OF FAMILY CARERS: “If family carers are to be valued and supported in their roles during the hospitalisation of adults with CP and CCN (and others with long-standing disability), policies and procedures for their involvement in care on the ward need to be developed. New policies should reflect: (a) the important role that family carers play in passing on information, advocacy, and communication support; (b) the need to acknowledge the expertise of family carers and to facilitate their involvement as collaborative partners in care; (c) the need to increase the capacity of hospital staff to provide care to adults with CP and CCN; and (d) the need to increase collaborative links between hospital and disability services to ensure a continuity of supports to family carers across settings. Such policies might assist family carers in the process of transferring their roles in direct care to health care providers (Llewellyn et al., 2004), in preparation for the future when the older family carer is no longer able to provide such care in the hospital setting.” (p. 135).  see Hemsley, B., Balandin, S., & Togher, L. (2008). Professionals’ views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital. Journal of Intellectual & Developmental Disability, June 2008; 33(2): 127–136.

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.