Post on 14-Dec-2015
“Learning to learn their views”: Including young
people with different communication abilities
in social research
Lise MogensenSocial Justice & Social Change Research Centre,University of Western Sydneyl.mogensen@uws.edu.au
Background
Dominant research focus on deficits Inclusive research methodology with
children rarely used Challenges:
› The ‘nature ‘ of autism› Access and consent› Suitable research methods
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Reported Challenges and Barriers
Reluctance to participate Concrete thought processes Difficulty in talking about the future Lack of personal insight Dislike of change
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(Preece, 2002)
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Autism
(Klin, Lang, Cicchetti, & Volkmar, 2000; Bailey, Palferman, Heavey, & Le Couteur, 1998; Chakrabarti & Fombonne, 2005; Le Couteur et al., 1996; Lord, Leventhal, & Cook Jr., 2001)
Autism Spectrum Disorders (ASD)• Autism• Asperger’s Syndrome• Pervasive Developmental Disorder• Higher Functioning Autism• Atypical Autism
Communication &
use of Language
Sensory
SensitivitiesDislike Change
Prefer Routine
Repetitive orUnusual
Behaviour
Two-way Social Interaction
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Reported Challenges and Barriers
Ethical and methodological dilemmas Access and consent
• Tension between the rights of children to participate in research, and the carers’ responsibility to protect them.
• Adult preconceptions about children's participation abilities
Research methodology Traditional research approaches unsuitable Traditional data collection methods lack flexibility A single method is not likely to suit all
(Beresford, Tozer, Rabiee, & Sloper, 2004; Kelly, 2005; Kelly, McColgan, & Scally, 2000; Morris, 2003; Preece, 2002)
Epistemological approach
Focus on Teenagers › knowledge, strengths and preferences
Collaborative participatory Teenagers authoritative
› Qualitative methods› Issues within broad topic areas
Analysis aimed to identify meanings› Collective› Individual
Combing theories
‘New’ Sociology of Childhood
Social Models of Disability
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(Including Alderson & Morrow, 2004; Christensen & James, 2000; Christensen & Prout, 2002; Davis, 1998; Davis, Watson, & Cunningham-Burley, 2000; Kelly, 2005; Kelly, McColgan, & Scally, 2000; Mason & Urquhart, 2001; Oliver, 1990; Thomas, 1999;
Prout & James, 1990)
Theoretical approach 1
Children as social actors
Co-constructors of knowledge
Taking children’s views seriously
Lives in the present and thoughts on the future
‘New’ Sociology of Childhood
(Alderson, 2001; Fattore & Mason, 2005; Fattore, Mason, & Nixon, 2005; Mayall, 2002; Prout & James, 1990) 8
Theoretical approach 2
Impairment physical, cognitive,
communication or sensory limitations
Disability oppressive barriers,
negative attitudes, lack of support, access or equipment
Questions ‘social norms’
Social (relational)
Model of Disability
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(Davis, 2000; Morris, 2003; Oliver, 1990, Thomas, 1999)
Research process overviewResearch phases
Means ofCommunication
Methods Purpose
1 Parent consultation
Phone Semi-structured interviews
•Parent recruitment & consent•Preliminary info about teenager communication requirements
2 Parent & Teenager consultation
Face to face(Verbal, Signs, Cards)
Semi-structured interviews
•Teenager recruitment & consent•I.D. methods & communication strategies
3 Individual engagement of teenagers(2 – 5 visits +
other contact)
•Face to face(Verbal, written, signs, photos, pictures)•Email(written)
•Semi-structured interviews•‘Being-with’
Data collection process
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Participants Six participants 13 – 18 years of age 2 females 4 males Secondary education
› Main stream classes with varying support› School for specific purposes (SPSS)
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METH
OD
S O
F INFO
RM
ATIO
N A
ND
C
ON
SEN
T
Social Stories ™ (Gray, 2002; Gray & Garand, 1993)Modified Social story (Beresford, Tozer, Rabiee & Sloper, 2004)
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Lise would like to see what John* is doing at school today - Is this ok?
John can say or nod his headJohn can say or shake his head
Can Lise take some photos of John?
John can hold STOP card to stop or have a break
(*Not participants real name. Use of photo permitted)
Data collection methods
Semi-structured interviews› Face to face› Email
Being-with› Participant observation› Active participation› Interaction
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Data Collection Methods:
Face to face interviews
Strategies › Communication Toolbox› Preparing participants› Individualising questions› Rephrasing questions› Clarifying answers › Parent assistance› Using humour› Using Individuals’ own ideas
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‘Me
tree
’
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Data Collection Methods:
Email Interviews
Strategies› Max 4 questions per email› Setting the scene› Prompt response to participant email
Benefits› Convenient› Cost effective› Efficient› Generates written data
Limitations› No body language observations› Access to computer and internet› Computer literacy› May compromise young people’s privacy &
confidentiality
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Data Collection Methods:
‘Being-With’ Strategies
› Preparation› Spending time in
several settings› Observing and
interacting› Taking photos and
making video clips› Interactive Activities
(Use of photos permitted)
CO
MM
UN
ICATIO
N Talking mat™ (Cameron & Murphy, 2002)Write draw and talkProfile map
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Research challenges
Participation abilities and competencies of young people with autism differ.› Important to value diverse forms of
knowledge and contribution
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Research challenges
Difficulty convincing adults that young people’s views are important› Researchers must be prepared to
continually emphasise value of young people’s views.
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Considerations for facilitating engagement
Sensitivity › Abilities › Preferences
Reciprocity› Style of Communication› Develop rapport› Avoiding ambiguity› Individualizing interviewing style
Flexibility Respect
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Key points
Young people diagnosed with autism › Were a diverse group› Had something to communicate› Had different views to their parents› Had different knowledge of and interest in
autism› Did not think autism was always most
important in their lives
ReferencesAlderson, P. (2001). Research by children. International Journal
of Social Research Methodology, 4(2), 139-153.Alderson, P., & Goodey, C. (1996). Research with disabled
children: How useful is child-centred ethics? Children & Society, 10, 106-116.
Alderson, P., & Morrow, V. (2004). Ethics, social research and consulting with children and young people. Essex: Barnado's.
Beresford, B., Tozer, R., Rabiee, P., & Sloper, P. (2004). Developing an approach to involving children with autistic spectrum disorders in a social care project. British Journal of Learning Disabilities, 32(4), 180-185.
Christensen, P., & Prout, A. (2002). Working with ethical symmetry in social research with children. Childhood, 9(4), 477-497.
Davis. (1998). Understanding the meanings of children: A reflexive process. Children & Society, 12, 325-335. 24
ReferencesDavis. (2000). Disability studies as ethnographic research and text:
Research strategies and roles for promoting social change. Disability & Society, 15(2), 191-206.
Davis, Watson, N., & Cunningham-Burley, S. (2000). Learning the lives of disabled children. In P. C. A. James (Ed.), Research with children: Perspectives and practices. London: Falmer Press.
Fattore, T., & Mason, J. (2005). Working seriously towards new partnerships. In J. Mason & J. Fattore (Eds.), Children taken seriously in theory, policy and practice. London: Jessica Kingsley.
Fattore, T., Mason, J., & Nixon, D. (2005). Participation: Count me in! Involving children and young people in research. Sydney: NSW Commission for children and young people, and Social Justice and Social Change Research Centre, University of Western Sydneyo. Document Number)
Fattore, T., Mason, J., & Watson, E. (2007). Children's conceptualisation(s) of their wellbeing. Social Indicators Research, 80, 5-29.
Kelly, B. (2005). 'Chocolate...makes you autism': Impairment, disability and childhood identities. Disability & Society, 20(3), 261-275.
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ReferencesKelly, B. (2007). Methodological issues for qualitative research with
learning disablde children. International journal of Social Research Methodology, 10(1), 21-35.
Mason, J., & Urquhart, R. (2001). Developing a model for participation by children in research on decision making. Children Australia, 26(4), 16-21.
Mayall, B. (2002). Towards a sociology for childhood: Thinking from children's lives. Buckingham: Open University Press.
Morris, J. (2003). Including all children: Finding out about the experiences of children with communication and/or cognitive impairments. Children & Society, 17(5), 337-348.
Preece, D. (2002). Consultation with children with autistic spectrum disorders about their experience of short-term residential care. British Journal of Learning Disabilities, 30, 97-104.
Prout, A., & James, A. (1990). A new paradigm for the sociology of childhood? Provenance, promise and problems. In A. J. A.Prout (Ed.), Constructing and reconstructing childhood: Contemporary issues in the sociological study of childhood. London: Falmer Press.
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