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EHDI Theories and Family Realities Professor Alys Young Social Research with Deaf People (SORD) group The University of Manchester, UK

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Presentation on theme: "EHDI Theories and Family Realities Professor Alys Young Social Research with Deaf People (SORD) group The University of Manchester, UK"— Presentation transcript:

1 EHDI Theories and Family Realities Professor Alys Young Social Research with Deaf People (SORD) group The University of Manchester, UK alys.young@manchester.ac.uk (Wendy the Sheep) © www.perfectpicturecards.co.uk ©

2 New promises - new puzzles Realistic expectation of optimum language development for allRealistic expectation of optimum language development for all Why are some children doing better than others?Why are some children doing better than others? Same question always existed?Same question always existed? No – now have a common baseline and higher expectations.No – now have a common baseline and higher expectations.

3 New promises – new puzzles Accurate detection not enough without quality interventionAccurate detection not enough without quality intervention Intervention revolution - quality and approachIntervention revolution - quality and approach So what works for which families in which circumstances?So what works for which families in which circumstances?

4 New promises – new puzzles Close developmental monitoringClose developmental monitoring Evidencing the success of EHDIEvidencing the success of EHDI But what of the long term quality of life of families – what is success in families terms?But what of the long term quality of life of families – what is success in families terms?

5 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.Understanding the diverse and complex realities of families and how these exert influence. messy datamessy data

6 Controlling for messiness… A lot of research seeks to control out the messy issues e.g.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.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 childs developmental progress –Measure degree of parental engagement with intervention against childs progress

7 The alternative? Every child and family is differentEvery child and family is different Not good enough!

8 Some thoughts on family realities Why is it important to think about what stays the same for families?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?What is good scaffolding for the changes a d/hh child might bring? Do we have the tools for interpreting family realities?Do we have the tools for interpreting family realities? Understanding intervention as uptake not inputUnderstanding intervention as uptake not input

9 Its important to understand what stays the same Lots of emphasis on d/hh child as a break in the narrativeLots of emphasis on d/hh child as a break in the narrative On needing to process vast amounts of new information, knowledge and experienceOn needing to process vast amounts of new information, knowledge and experience Nothing will ever be the same againNothing will ever be the same againTRUE…BUT…

10 Families existed before the d/hh childFamilies existed before the d/hh child Parents as individuals existed before the d/hh childParents as individuals existed before the d/hh child Attitudes, values, previous experiences, culture, personality, social situation…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 futureThe resource for making sense of the experience; coping strategies; basis for choice; shaping priorities; envisioning the future

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12 Example Young et al., 2006; 2008. Informed choice project – Government sponsoredInformed choice project – Government sponsored Guidance for professionals and for parentsGuidance for professionals and for parents We began with a simple model…We began with a simple model…

13 IC example Nature of information UnbiasedUnbiased Risks and uncertaintiesRisks and uncertainties PresentationPresentation AccessibilityAccessibility AvailabilityAvailability Professional resources for choice AvailabilityAvailability UniversalityUniversality Strategic decision makingStrategic decision making ResourcingResourcing PrioritisationPrioritisation

14 Then we thought about choosing… Different sorts of choosing processes and kinds of choosersDifferent 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 choosingSome people may not be used in their everyday lives with choosing –Professionals used to the process –New experience of being put in that position

15 Then we thought about choosing People vary in their capacity to make choicesPeople vary in their capacity to make choices –Self esteem –Mental ill health Socio/structural factors constrain choiceSocio/structural factors constrain choice –Hidden influences of money –Significant issues of cultural preference

16 Why were we behaving like the most significant issues were ensuring that the information was appropriate and professional resources for choice were in place?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 happenWho parents/families were before and are now should be the primary focus for ensuring informed choice can actually happen

17 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

18 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 dont feel comfortable and confident about making choices Its OK to change my mind Not everything Ive been told about is available Would learning a new skill help me to make choices for my child?

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21 EHDI Theories and Family Realities EHDI theories will only work because of family realities, not inspite of those 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.Working with who and how parents and families have always been, has got to be the starting point.

22 Undergoing change Young, 2002. Family realities will undergo change as a result of the whole experience that comes with having a d/hh child.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/experiencesNot just new knowledge/information/people/experiences New sphere of relevance (Schutz)New sphere of relevance (Schutz) Living with imposed set of relevancies (Voysey)Living with imposed set of relevancies (Voysey)

23 As individuals and as family systems we vary enormously in our capacity to admit change and to cope with changeAs 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 capacityHaving a d/hh child forces a spotlight on this capacity

24 "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]

25 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?"" 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 comments900 parents wrote comments [Young and Greally, 2003]

26 The Assertiveness Continuum A questioning attitude Non acceptance/ active challenge Being prepared to fight To become informed To take some control Redressing power imbalance To help reach decisions Ensuring quality and standards Centrality of parent knowledge/rights In order to own decisions Broader and higher expectations As a modus operandi For specific issues of preference As a general principle of rights To ensure/ enforce quality

27 Trust your instincts INSTINCT As an aid to decision making As a means of being comfortable with choices made An appeal to self belief

28 You know your child best Confidence with professionals Confidence in self as parent A guide to the day to day Acknowledges the individuality of d/hh children

29 Being and staying positive Adopting and maintaining a positive approach It should be the starting point Enables attitudes and behaviours that work for parents and children Its not wishful thinking - theres good reason to be positive Because time is a healer Because time is a revealer

30 This is the scaffolding… Parents tell other new parents that it is most helpful to be: AssertiveAssertive InstinctualInstinctual Confident in their own knowledgeConfident in their own knowledge And always positiveAnd always positive

31 Family realities But not everyone can be, not everyone starts off that wayBut not everyone can be, not everyone starts off that way Capacities to admit change and to develop the scaffolding will vary enormouslyCapacities 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 inFor 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…Not everyone is a Wendy the Sheep…

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33 Interpreting family realities Pollard – rare for families to receive a comprehensive assessment of their strengthsPollard – rare for families to receive a comprehensive assessment of their strengths We spend a lot of time seeking to identify families needs and meeting themWe 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?But can we tell when a strength is a need and when a need is a strength?

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35 Example Young et al, 2007; Young, 2009 Research study about the impact of knowing earlyResearch study about the impact of knowing early 47 parents involved in interviews47 parents involved in interviews The time problemThe time problem

36 Time and action Knowing early means more time to get used to the idea [no rush…]Knowing early means more time to get used to the idea [no rush…] Better off because know now and something can be doneBetter off because know now and something can be done

37 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 hes actually just come along with it, he knows how to listen…so its 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…hes not missed out on 10 months of noise, we havent got to make up for that. (9,5,S) 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 hes actually just come along with it, he knows how to listen…so its 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…hes not missed out on 10 months of noise, we havent got to make up for that. (9,5,S)

38 Knowing early means action can be taken quicker – no time to lose [deafness as an emergency…]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 doneWorse off because know now and nothing seems to be being done

39 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 havent achieved that yet because weve not obtained…that level in the digital ear we should have…at the moment he is not benefiting at all, so were still four months behind, were still four months behind, we havent benefited from this newborn hearing [27,4,P]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 havent achieved that yet because weve not obtained…that level in the digital ear we should have…at the moment he is not benefiting at all, so were still four months behind, were still four months behind, we havent benefited from this newborn hearing [27,4,P]

40 Making meaning and effective intervention How families make meaning out what is happening to them/the meaning they bring to itHow 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)Important interface for understanding how and why intervention and support might be effective (and have different kind of outcomes)

41 Effective intervention? Too easy to behave as if intervention is inputToo easy to behave as if intervention is input Strive to improve the quality and suitability of what is providedStrive to improve the quality and suitability of what is provided But intervention only as good as its uptakeBut intervention only as good as its uptake How families receive it, engage with it, see is relevance, its timeliness, its suitability, its usefulness etc.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…And that uptake is mediated by all the kinds of messiness we have been discussing so far…

42 Beliefs, values, culture, priorities, previous life experience, expectations, social ecology, coping styles, change capacityBeliefs, values, culture, priorities, previous life experience, expectations, social ecology, coping styles, change capacity They will cause parents to vary in: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

43 MVOS Young, Gascon-Ramos et al, 2009 My Views on ServicesMy Views on Services Parent-defined assessment of quality of interventionParent-defined assessment of quality of intervention Validated instrumentValidated instrument Only looking conceptually here…Only looking conceptually here…

44 Written questionnaire – parents - 6 monthly intervals A description of the of professional services evaluated according toA description of the structure of professional services evaluated according to timeliness and availability timeliness and availability Need to know not just what and quantity, but if it was right at the right timeNeed 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 timeAnd was something wanted but not available or not available at the right time

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46 Content The content of intervention evaluated according to quantity, importance and satisfactionThe content of intervention evaluated according to quantity, importance and satisfaction Possible to have lots of something but not be importantPossible to have lots of something but not be important Importance may have no positive relationship with quantityImportance may have no positive relationship with quantity Satisfaction may be more to do with quantity than importance (or not)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 valueAsking 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

47 Content of intervention (22 items)

48 Process The process of the intervention evaluated according to extent and importance How something is delivered as important as what is deliveredHow something is delivered as important as what is delivered But parents will still vary in the importance they ascribe to some features of processBut 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 allNot all features of process may be helpful to the same extent for all

49 18 items

50 Impact The overall impact of the intervention in terms of child, family and parent themselves Are these usually differentiated enough?Are these usually differentiated enough? Direction of impactDirection of impact

51 6 items

52 Family realities Foreground what it is that means that individual parents and families appraise intervention and support differentlyForeground 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 childrenWork with that reality as families construct it, not what we might think works best for d/hh children

53 Conclusions What makes a difference?What makes a difference? Could have begun with my list: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

54 (in)conclusion… But we have to address how we get there…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

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56 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/14/4/422http://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 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/ http://www.dcsf.gov.uk/everychildmatters/healthandwellbeing/ahdc/e arlysupport/resources/downloads/downloads/

57 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 http://www.ndcs.org.uk/search_clicks.rm?id=264&destinationtype=2&instanceid=1 29702 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.

58 Alys.young@manchester.ac.uk


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