Tag Archives: participants

Moving forward with some questions…

During this last week we have been discussing the issues around the three main concerns arising – that of the core vocabulary, symbol sets already available and working with participants.  The diagram below is available in text format – Arabic Symbol Dictionary plans Feb to April

diagram of questions for Feb-April

Visits and telemeetings along with journal paper collections have started the process of making choices that will be further explored during three days of meetings between all the partners.

A few random questions have also arisen…

Does anyone have experience in evaluating the difference between the way text to speech works for users when presenting spoken words; which have to be listened to in the order they are said and may be colloquial (diglossic Arabic) and the written words and symbols which although they have an order on the page the reader has the flexibility to scan them in a any order?

Looking at a paper entitled “How do members of different language communities compose sentences with a picture based communication? Nakamura et al (1998) .  Would this be one way to start exploring the differences we know exist between Arabic and English language systems in terms of symbol selection?

Do we need to consider whether it will be necessary to change the graphic design of symbols we choose to suit participant preferences in childhood and adulthood?  This has been suggested by Sorcha Rabbitte and Stanislava Antonijevic-Elliott in their PowerPoint presentation ”  Graphic Design and Graphic Symbols: bridging the gap, exploring preferences (PDF download)

Huer and Nigram have debated the issues of cultural sensitivity of symbols  with certain aspects of Core vocabularies  such as  verbs causing particular issues.  Do we need to debate this in more depth?

Examining Perceptions of Graphic Symbols Across cultures

Do Individuals from Diverse Cultural and Ethnic backgrounds perceive graphic symbols differently Nigram

Response to Nigram

These references are important as  we are not only trying to make a dictionary that is culturally sensitive but also one that will offer practicioners the chance to encourage literacy skills.  So do need to explore different symbol systems such as the Unity system, Minspeak , Semantic Compaction etc.?

Minspeak and Unity

We also need to consider symbol choices where not everyone is speaking Arabic but are living in Qatar.  Evans et al have a presentation on the subject in relation to their work with Somali patients visiting medical centres in UK. Evans 2006 – Using Iconicity to Evaluate Symbol Use

Many researchers are now exploring Natural Language Generation (NLG) and AAC as a tool to use for taking lists of words and symbols to symbol set creation for independent generation of vocabularies/stories etc.  Do we need to explore this one in more depth?   Bliss may be an easier system to manipulate using NLG for both languages but perhaps not so transparent or translucent as some of the more pictorial symbol systems.

Professor Annalu Waller and Rolf Black are  engaged in this research and visits to Dundee are planned.  How was School today

Further links

Developing intercultural awareness – elearning website with useful links defining culture and intercultural awareness

 Cultural Issues in the Practice of Augmentative and Alternative Communication
Mary Blake Huer and Gloria Soto – presentation to ASHA in Miami, 2006

A Clinician’s Guide to Arabic Language and Culture by Martinez et al supervised by Rahul Chakraborty – Texas State University, USA

Cultural Competence from the The American Speech-Language-Hearing Association (ASHA website)





Thinking about informed consent?

papersOne of the early tasks for the Arabic symbol dictionary team will be gathering focus groups to make choices around the types of symbols and pictograms that would be most suitable for the dictionary.  This will involve working with vulnerable individuals such as those who have disabilities, young children and the elderly.

There has already been a series of processes required in order to gain access to research participants that have entailed working with an ethics committee.  Samples of questionnaires, consent forms and letters of intent have been provided.  As usual these have been paper based and require a level of literacy skills.  In some cases it will be the carers or assistants of the vulnerable individual who will be answering the questions and even providing the consent.

There are many questions that could be asked about this procedure such as:

  • Who benefits from the ethics process and what are the outcomes?
  • Should they be related to the organisation’s concerns pertaining to a duty of care?
  • Are there fears that mistakes will be made, which could lead to possible litigation?”

Or, as was raised in a recent focus group, are there issues of transparency, the wellbeing of the individual and the need for an understanding around the concept of informed consent not just at the time of agreeing to participation but throughout the project’s lifetime?

The focus group held at the University of Southampton this week brought together a group of researchers who had experience working with vulnerable individuals and were interested in the dilemmas surrounding ‘informed consent’.   The meeting was part of a wider research project being undertaken by researchers from the Universities of Southampton, Oxford and Kings College London.

Some important key points came out of the discussions that should be considered.  It was felt that the informed consent process should:

  • be more flexible in the way it is presented to any future participants
  • be sensitive to context, gender and age as well as to the cultural and social background of the participant.
  • make sure there are checks in place to confirm understanding of what is involved when participating and the outcomes of participation
  • include the use of multimedia and multimodal methods to explain what is entailed such as animation, pictures and audio – not just to gain positive or negative responses at the outset of the project but throughout the project lifetime.
  • allow for ways of capturing feedback from the participants, such as video to check facial features and other gestures not just audio recordings
  • involve participants in the process as much as possible
  • allow for increased vigilance regarding the views of individual participants or the group’s views even if carers or assistants have provided the informed consent.
  • offer personalisation of technologies to increase access to different ways of providing informed consent.
  • respect a participant’s wish to withdraw, temporarily stop or change the way they are working with the researcher, even if this affects the data collection process
  • take into account any feelings of concern due to the dynamics of power in terms of human interactions – the use of technology could possibly overcome this sort of issue
  • re-visit areas of informed consent if the project changes in any way


Parsons, S. and Abbott, C. (2013) Digital technologies for supporting the informed consent of children and young people in research: the potential for transforming current research ethics practice. EPSRC Observatory for Responsible Innovation in ICT. Web Page accessed 16/01/2014 http://eprints.soton.ac.uk/356044/

Parsons, S. and Cobb, S. (2013) Who chooses what I need? Child voice and user-involvement in the development of learning technologies for children with autism. EPSRC Observatory for Responsible Innovation in ICT Web page accessed 16/01/2014 http://eprints.soton.ac.uk/356044/

Mukhola, S., Brown, R., Godsell, G., Henning, E., Lotz, N. & van Rooyen, H. (2005). Storytelling as a means of obtaining informed consent in an adult educational enquiry. In ISIMD 3rd International Symposium of Interactive Media Design Web Page accessed 16/01/2014  http://newmedia.yeditepe.edu.tr/pdfs/isimd_05/23.pdf

A Participatory Approach to Research

The Arabic symbol dictionary research project is going to require a considerable amount of participation from all those taking part. Without the help and support of AAC uses and those expects and carers exploring the best way to help these individuals to communicate every day, this project will not succeed. Therefore at this juncture it is important to examine the various  ways of encouraging the types of participation that could support the way the team works with those who may be willing to help.

Members of the team working on this project have had experience of participatory research in the past and have published on the subject with a paper titled “Exploring the technology experiences of disabled learners in higher education: challenges for the use and development of participatory research methods” (download Word doc).  But as a way of introducing the subject on this blog it seemed to be easier to present a series of diagrams.

There have been several authors who have discussed the different ways of working in a participatory fashion and have highlighted some of the issues such as Zarb (2003) who writes

” Research cannot ever lead directly to the empowerment of disabled people (or any other group for that matter). As Mike Oliver points out, empowerment is not something that can be given, but something that people must take for them selves. The key issue – “is not how to empower people but, once people have decided to empower themselves, precisely what research can do to facilitate this process” (Oliver, 1992, p. 111)

As can be seen in the mindmap below and the outline notes there are many dilemmas in the quest to encourage a participatory approach to research with disabled individuals. 

Participatory Approach

Outline version

  • Research done with people rather than on people (Reason & Heron 1986)
      • Equality in research relationships but not reject expert knowledge
        • Ensure research owned by participants as well as researchers (Cornwell &Jewkes 1995:1667)
          • Participants encouraged to own the outcome by setting the goals and sharing in decisions about processes (Everitt et al 1992:50)
        • Make traditional research more effective and meaningful
    • Essential to be aware of the issues involved
      • Need clarity of agreed aims and objectives as well as the roles of the researchers and participants. (Ward & Trigler 2001 Pg 58)
        • An overemphasis on getting the process right in terms of inclusion, can lead to mistakes being made in locating methods to answer the questions.” (Walmsley, 2004 Pg 32)
      • Discuss and be aware of how the research may affect participants.
      • Not the same as emancipatory research that is controlled by participants.
        • Walmsley  (2004) says it is widely accepted that, in contrast to emancipatory research, in participatory research, non-disabled people have an enduring role.”
      • Outcomes must be more than just reconstructed stories or mere validations of research undertaken (Duckett & Pratt , 2007)
      • Participation at the outset will help reduce incorrect labelling (disability/ability) or assumptions being made as to learner preferences.
      • Awareness of Funder’s requirements & Time constraints affecting degree of participation and possible outcomes
        • Chapell argues that “participatory research can be understood better as a pragmatic compromise between conflicting pressures on researchers. ..” this is when compared to emancipatory research as described by Zarb (1992)
  • Semi-structured interviews

Degrees of Participation

As can be seen from the diagram below there are degrees of participant involvement and it was felt that for the symbol dictionary project, the only way forward would be if the team and researchers initiated ideas and shared their thoughts with participants.  Those participants using AAC Devices may not necessarily understand the linguistic elements of the project or be able to provide ideas if they have no knowledge of all the symbol systems on the market or the type of pictograms available in Arabic.  However, their support in making decisions about ideas presented will be essential, as will that all the experts and carers.  It would also be helpful to have the involvement of outside experts who could become critical friends as a way of seeking informal advice at times when concerns about particular issues arise.

participatory involvement


So in an adaptation of Fajerman and Treseder’s diagram (2000), the chosen methodology involves the researcher initiating concepts but there are shared decisions with participants. So the “researcher has the initial idea but participants are involved in every step of the planning and implementation. Not only are their views considered  but participants are also involved in taking the decisions.” 


Chappell, A (2000) Emergence of participatory methodology in learning difficulty research: understanding the context. British Journal of Learning Disabilities, 28, 38-43

Cocks E. & Cockram J. (1995) The participatory research paradigm and intellectual disability. Mental Handicap Research, 8: 25–37.

Cornwall, A. & Jewkes, R. 1995, “What is Participatory Research?”, Social Science and Medicine, vol. 41, no. 12, pp. 1667-1676.

Duckett, P. & Pratt, R. 2007, “The emancipation of visually impaired people in social science research practice”, British Journal of Visual Impairment, 25, 1, 5-20.

Everitt, A., Hardiker, P., Littlewood, J. and Mullender, A. (1992) Applied Research for Better Practice, Macmillan, London.

Fajerman, L. and Treseder, P. (2000) Children are Service Users too, Save the Children Publications, 17 Grove Lane, London, SE5 8RD.

French, S. & Swain, J. 2004, “Researching Together: A Participatory Approach,” in Physiotherapy: A Psychosocial Approach, 3rd edn, S. French & J. Sim, Eds., Butterworth-Heinemann, Oxford.

Fischer, G., & Ostwald, J. (2002) “Seeding, Evolutionary Growth, and Reseeding: Enriching Participatory Design with Informed Participation, In Proceedings of the Participatory Design Conference (PDC’02), Malmö University, Sweden, pp. 135-143.

Newell, A., Carmichael, J. & Morgan, M (2007) Methodologies for involving older adults in the design process. In Proceedings of the 4th International Conference on Universal Access in HCI: http://www.springerlink.com/content/53t5026735v65721/fulltext.pdf

Radermacher, H. (2006) Participatory Action Research With People With Disabilities: Exploring Experiences Of Participation, Doctoral Thesis. Victoria University.

Richardson, M (2000) How we live: participatory research with six people with learning difficulties, Journal of Advanced Nursing 32, 6, 1383–1395.

Ward, K., & Trigler, J. S. (2001). Reflections on participatory action research with people who have developmental disabilities. Mental Retardation, 39, 57–59.

Zarb, G. (1992) On the Road to Damascus: First steps towards changing the relations of research production, Disability, Handicap and Society, 7, 2, 125 – 38.

Zarb G (2003) Running out of steam? The impact of research on disability policy and the disability rights agenda keynote paper presented at Disability Studies: Theory, Policy and Practice Conference Lancaster