Transcript EHDI Theory and Family Reality

EHDI Theories and
Family Realities
(Wendy the Sheep)
©
Professor Alys Young
Social Research with Deaf People (SORD) group
The University of Manchester, UK
[email protected]
© www.perfectpicturecards.co.uk
New promises - new puzzles
• Realistic expectation of optimum language
development for all
• Why are some children doing better than
others?
• Same question always existed?
• No – now have a common baseline and higher
expectations.
New promises – new puzzles
• Accurate detection not enough without
quality intervention
• Intervention revolution - quality and
approach
• So what works for which families in which
circumstances?
New promises – new puzzles
• Close developmental monitoring
• Evidencing the success of EHDI
• But what of the long term quality of life of
families – what is success in families’
terms?
Contingent questions…
– Why are some children doing better than others?
– So what works for which families in which
circumstances?
– what is success in families’ terms?
• Understanding the diverse and complex realities
of families and how these exert influence.
• “messy data”
‘Controlling’ for messiness…
• A lot of research seeks to control out the messy issues
e.g.
– Exclude non English users
– Only sample from EHDI programmes we can guarantee are
‘quality’
– Exclude d/hh children with additional needs
• A lot of research seeks to account for diversity by
factoring in what is measurable but not accounting for
how it operates e.g.
– Look at relationship between socio-economic status of parents
and child’s developmental progress
– Measure degree of parental engagement with intervention
against child’s progress
The alternative?
• “Every child and family is different”
Not good enough!
Some thoughts on family realities
• Why is it important to think about what stays the
same for families?
• What is good scaffolding for the changes a d/hh
child might bring?
• Do we have the tools for interpreting family
realities?
• Understanding intervention as uptake not input
It’s important to understand what stays
the same
• Lots of emphasis on d/hh child as a break
in the narrative
• On needing to process vast amounts of
new information, knowledge and
experience
• Nothing will ever be the same again
TRUE…BUT…
• Families existed before the d/hh child
• Parents as individuals existed before the d/hh
child
• Attitudes, values, previous experiences, culture,
personality, social situation…
• The resource for making sense of the
experience; coping strategies; basis for choice;
shaping priorities; envisioning the future
Example
Young et al., 2006; 2008.
• Informed choice project – Government
sponsored
• Guidance for professionals and for parents
• We began with a simple model…
IC example
Nature of
information
• Unbiased
• Risks and
uncertainties
• Presentation
• Accessibility
• Availability
Professional
resources for
choice
• Availability
• Universality
• Strategic
decision
making
• Resourcing
• Prioritisation
Then we thought about choosing…
• Different sorts of choosing processes and
kinds of choosers
– Rational decision making models
– Emotional choosers
• Some people may not be used in their
everyday lives with choosing
– Professionals used to the process
– New experience of being put in that position
Then we thought about choosing
• People vary in their capacity to make
choices
– Self esteem
– Mental ill health
• Socio/structural factors constrain choice
– Hidden influences of money
– Significant issues of cultural preference
• Why were we behaving like the most significant
issues were ensuring that the information was
appropriate and professional resources for
choice were in place?
• Who parents/families were before and are now
should be the primary focus for ensuring
informed choice can actually happen
Parent Booklet
• We structured it around issues and
processes of choosing, not around the
subjects of concerns that people had to
make choices about.
• Underpinning issues
• Case examples
• Followed by
– Things to think about,
– ideas for putting it into practice,
– further resources to go to
Some of the issues used to
structure parent version
I need more than information to make a choice
Do I really have a choice in every situation?
It seems like the professionals think one choice is better
I don’t feel comfortable and confident about making choices
It’s OK to change my mind
Not everything I’ve been told about is available
Would learning a new skill help me to make choices for my child?
EHDI Theories and Family Realities
• EHDI theories will only work because of
family realities, not inspite of those
realities.
• Working with who and how parents and
families have always been, has got to be
the starting point.
Undergoing change
Young, 2002.
• Family realities will undergo change as a result
of the whole experience that comes with having
a d/hh child.
• Not just new
knowledge/information/people/experiences
• New ‘sphere of relevance’ (Schutz)
• Living with ‘imposed set of relevancies’ (Voysey)
• As individuals and as family systems we
vary enormously in our capacity to admit
change and to cope with change
• Having a d/hh child forces a spotlight on
this capacity
"Having deaf children has emphasised my
own difficulties with life (I am not good at
asking questions, accessing information/
demanding things) and my children need
me to be."
[Parent evidence in Young and Greally, 2003]
What do parents say they need to
be????
• " If you were talking to new parents of deaf
children, what are most important things
you would like to share with them from
your own experiences?"
• 900 parents wrote comments
[Young and Greally, 2003]
The Assertiveness Continuum
A questioning
attitude
To become
informed
To take some
control
Non acceptance/
active challenge
Broader and higher
expectations
Ensuring quality
and standards
Redressing power
imbalance
Centrality of parent
knowledge/rights
To help reach
decisions
In order to ‘own’
decisions
Being prepared
to “fight”
As a modus
operandi
For specific issues
of preference
As a general
principle of rights
To ensure/
enforce quality
“Trust your instincts”
As an aid to
decision making
INSTINCT
As a means of being
comfortable with choices made
An appeal to self belief
“You know your child best”
Confidence with
professionals
You
know
your
child best
Confidence in self as
parent
A guide to the day
to day
Acknowledges the individuality of
d/hh children
Being and staying positive
It should be the starting point
Adopting
and
maintaining
a positive
approach
Enables attitudes and behaviours that
work for parents and children
It’s not wishful thinking - there’s
good reason to be positive
Because time is a ‘healer’
Because time is a ‘revealer’
This is the scaffolding…
Parents tell other ‘new ‘ parents that it is
most helpful to be:
•
•
•
•
Assertive
Instinctual
Confident in their own knowledge
And always positive
Family realities
• But not everyone can be, not everyone starts off that
way
• Capacities to admit change and to develop the
scaffolding will vary enormously
• For EHDI theories to work in family realities, we need to
be focussing everyone on the promotion of the
scaffolding no matter what part of the matrix they are in
• Not everyone is a Wendy the Sheep…
Interpreting family realities
• Pollard – rare for families to receive a
comprehensive assessment of their
strengths
• We spend a lot of time seeking to identify
families’ needs and meeting them
• But can we tell when a strength is a need
and when a need is a strength?
Example
Young et al, 2007; Young, 2009
• Research study about the impact of
‘knowing early’
• 47 parents involved in interviews
• The ‘time’ problem
Time and action
• Knowing early means more time to get
used to the idea [no rush…]
• Better off because know now and
something can be done
“ As [ToD] says, the children who are picked up
when they are 6 or 7 months old, you have to
teach them to listen, whereas he’s actually just
come along with it, he knows how to listen…so
it’s just like all positive, and she said like
because he is so young being picked up we
expect him to be even more sort of normal…he’s
not missed out on 10 months of noise, we
haven’t got to make up for that.” (9,5,S)
• Knowing early means action can be taken
quicker – no time to lose [deafness as an
emergency…]
• Worse off because know now and nothing
seems to be being done
• “the whole thing about this newborn hearing is
that you tackle it at an early stage and basically
get the nerve ending, the auditory nerve to sort
of work at an early stage and we haven’t
achieved that yet because we’ve not
obtained…that level in the digital ear we should
have…at the moment he is not benefiting at all,
so we’re still four months behind, we’re still four
months behind, we haven’t benefited from this
newborn hearing” [27,4,P]
Making meaning and effective
intervention
• How families make meaning out what is
happening to them/the meaning they bring
to it
• Important interface for understanding how
and why intervention and support might be
effective (and have different kind of
outcomes)
Effective intervention?
• Too easy to behave as if intervention is ‘input’
• Strive to improve the quality and suitability of what is
provided
• But intervention only as good as its ‘uptake’
• How families receive it, engage with it, see is relevance,
its timeliness, its suitability, its usefulness etc.
• And that ‘uptake’ is mediated by all the kinds of
‘messiness’ we have been discussing so far…
• Beliefs, values, culture, priorities, previous
life experience, expectations, social
ecology, coping styles, change capacity
• They will cause parents to vary in:
–
–
–
–
What is defined as relevant, important, significant
How much parents are satisfied
Perceived impact
What is defined as an outcome/success
MVOS
Young, Gascon-Ramos et al, 2009
• My Views on Services
• Parent-defined assessment of quality of
intervention
• Validated instrument
• Only looking conceptually here…
Written questionnaire – parents - 6
monthly intervals
•
A description of the structure of professional
services evaluated according to
timeliness and availability
• Need to know not just what and quantity,
but if it was right at the right time
•
And was something wanted but not available or
not available at the right time
Content
• The content of intervention evaluated according
to quantity, importance and satisfaction
• Possible to have lots of something but not be important
• Importance may have no positive relationship with
quantity
• Satisfaction may be more to do with quantity than
importance (or not)
• Asking people if they are satisfied without an idea of how
they value/appraise something or the extent of what they
receive is of very little value
Content of intervention (22 items)
Process
The process of the intervention evaluated
according to extent and importance
• How something is delivered as important as
what is delivered
• But parents will still vary in the importance they
ascribe to some features of process
• Not all features of process may be helpful to the
same extent for all
18 items
Impact
The overall impact of the intervention in
terms of child, family and parent
themselves
• Are these usually differentiated enough?
• Direction of impact
6 items
Family realities
• Foreground what it is that means that
individual parents and families appraise
intervention and support differently
• Work with that reality as families construct
it, not what we might think works best for
‘d/hh children’
Conclusions
• What makes a difference?
• Could have begun with my list:
– Quantity and quality of language
– Confident and competent parents
– High expectations
– Risk taking and responsibility giving
– Being flexible and adaptable
– Allowing individuality to flourish
(in)conclusion…
• But we have to address how we get there…
– Significance of parents and families before having a
d/hh child
– Importance of understanding varying capacities for
change and how to promote the best scaffolding
– Focus on family realities as interpretative and
changing
– Take those interpretations seriously if we want to
understand how best to intervene/support
Young, A.M., Gascon-Ramos, M., Campbell, M. Bamford, J. (2009) The
Design and Validation of a Parent-Report Questionnaire for
Assessing the Characteristics and Quality of Early Intervention Over
Time. The Journal of Deaf Studies and Deaf Education. Free full
text: http://jdsde.oxfordjournals.org/cgi/content/full/14/4/422
Young, A.M., Carr, G., Hunt, R., McCracken, W., Skipp, A., Tattersall,
H. (2006). Informed choice and deaf children – underpinning
concepts and enduring concerns. Journal of Deaf Studies and Deaf
Education 11: 322-336.
Young, A.M., Carr, G., Hunt, R., Tattersall, H., McCracken, W. (2008)
Informed Choice and Deaf Children and Families. Proceedings of
Sound Foundation IV, Chicago: Phonak (pp 101-117).
http://www.phonak.com/professional/events_professional/events_pr
ofessional-archive/com-documents_2008.htm
“Helping you choose. Making informed choices for you and your child”
Free download:
http://www.dcsf.gov.uk/everychildmatters/healthandwellbeing/ahdc/e
arlysupport/resources/downloads/downloads/
Young, A.M. (2003) Parenting and Deaf Children - A psycho-social literature
based framework. London: NDCS.
http://www.ndcs.org.uk/search_clicks.rm?id=264&destinationtype=2&instanceid=1
29702
Young, A.M., Greally, A. (2003) Parenting and deaf children – report of the needs
assessment study. London: NDCS. ISBN 0 904 691 683
Young, A.M. (2002) Parents of deaf children – factors affecting communication
choice in the first year of life. Deafness and Education International 4 (1), 1 - 12.
Young, A.M. (2009, in press). The impact of early identification on hearing parents.
Oxford Handbook in Deaf Studies Volume 2. New York: Oxford University Press.
Young, A.M., Tattersall, H. (2007). Universal Newborn Hearing Screening and
early identification of deafness: parents’ responses to knowing early and their
expectations of child communication development. Journal of Deaf Studies and
Deaf Education, 12 (2), 209 - 220.
[email protected]