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The health and social outcomes of people with acquired hearing loss Anthony Hogan National Centre for Epidemiology & Population Health.

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Presentation on theme: "The health and social outcomes of people with acquired hearing loss Anthony Hogan National Centre for Epidemiology & Population Health."— Presentation transcript:

1 The health and social outcomes of people with acquired hearing loss Anthony Hogan National Centre for Epidemiology & Population Health

2 Overview The social position of people with acquired hearing loss The health and social impacts of hearing loss Barriers to providing assistance A comprehensive treatment model

3 The social position of people with acquired hearing loss

4 People with hearing loss have endured stigmatisation Deafness in ancient Greece a curse an absence of intelligence an inability to reason dull wittedness excluded from participation in community life

5 People with hearing loss have endured stigmatisation Deafness in Biblical times Stubbornness of heart, the refusal to listen, co-operate and obey. People with hearing loss and disabilities generally in biblical times, were poor outcasts, dependent on the charity of others for survival. Deafness = dumb = stupid

6 People with hearing loss have endured stigmatisation Deafness in medieval times An absence of reason People with disability seen as fools A person unable to speak was not allowed to inherit the family fortune Not allowed to receive the sacraments of the Church, which reflected one of the primary elements of full participation in community life Speech associated with citizenship rights

7 People with hearing loss have endured stigmatisation Deafness during the industrial revolution Lost traditional work on the land Unemployment soared as communication was central to work in cities Social revolutions – ‘society’ feared for its safety People with disability were institutionalised in large numbers – work houses Bell and the remaking of deaf people as hearing people

8 Still stigmatistised today Labels BHA members say people apply to them: Deaf, heedless, snobbish, inattentive, stupid, idiot, not with it, dumb, ignorant, useless, retarded, boring, arrogant, stubborn, slow, vague and psycho

9 Still stigmatistised today And labels some BHA members applied to themselves: I’m a nuisance, I’m hard to include I don’t matter, I don’t fit in I feel depressed, isolated, I’m difficult I feel less of a person, I am invisible I feel left out.

10 Has society consistently considered having hearing problems as being an inherently bad thing!

11 How would you feel about going to a BBQ where you didn’t know many people?

12 Psycho-social reactions to contested identity

13 Notions of normality Acceptable social behaviours are those which society has supported over time We promote good or normal behaviour And socially punish abnormal behaviour We’ve already seen that historically, social notions deafness and hearing loss hold negative values Deafness as something to be eliminated

14 Before the onset of hearing loss Our sense of self formed as ‘normal’ prior to loss Commonsense ways of doing and being Our life makes sense Taken-for-granted certainty of everyday interactions Our social identity is based on who we interact with and how

15 Mental security We know what to do so feel relaxed Predicability and surety = OK-ness Daily rituals promote sense of security Routine ‘control’ of self - accepted by others as trustworthy and competent

16 Role & identity Our behaviours as well as our words communicate our identity and connectedness to others Speaking, hearing, responding in speech Signal to others that we ‘fit’ in the hearing world That I am like you – I belong. I am part of this

17 The onset of hearing loss disrupts belonging We can no longer ‘behave’ ourselves We risk being regarded as incompetent because we break taken-for-granted rules We risk our membership of valued groups and networks

18 The epiphanal moment Everyone has their story when they were confronted with the reality of their hearing loss That the taken-for-granted of communication no longer works for you Where we break the rules of every day communication And where we faced the possibility of being tainted with the negative stereotypes associated with deafness and hearing loss

19 Thoughts They’ll think I’m stupid deaf = old I can’t do that! This is embarrassing I have no future Nothing works I’m out of here

20 Possible responses How do I get on with my life now that I don’t hear so well? Not sure how to respond appropriately Don’t say or do anything Withdraw Become isolated Risk of shame reduces my ability to function I can feel socially ineffective Things feel unpredictable

21 The breach of the social fact And it can happen in the most basic social situations - What did you say?????

22 What happens for HI people in situations like this?

23 Tri-level reaction Emotions Shame, sadness or grief Fear of failure/rejection/stupidity Flight/fight Anger Impatience or hate Stigma/prejudice Worry & anxiety - what’s my future? Lots of Physical Reactions Pupils dilate Saliva flow inhibited Heart beats faster Blood pressure may increase Bronchi dilates Adrenal gland secretes Digestion slows Liver puts sugar into the system More sweat Kidneys inhibited Peripheral blood vessels constrict Increased strength to muscles Fusion

24 You emotionally connect with the many thoughts running thru your head and FEAR results Fusion (stuff your mind tells you that gets in the way when you get emotionally caught up in it) Excessive goals (your goal is too big, or you lack the skills, or you lack the resources) Avoidance of discomfort (unwillingness to make room for the discomfort this challenge brings) Remoteness from values (losing touch with - or forgetting - what is important or meaningful about this or my life) FEAR

25 Fusion leads to loss of identity (with apologies to Erickson & Giddens) Fusion results in decentring Trust   Mistrust Identity   Role confusion Competent   Incompetent/inferior Intimacy   Isolation Pride   Shame Getting on   Stagnation Integrity   Despair These dyads are actually continuums in identity

26 Which we see manifest in everyday behaviours and reactions Continuums in identity Dynamic personal reactions Predicability   Uncertainty FlexibleSeeking to control Identity   Role confusion CentredFused with ideal types Competent   Incompetent/inferior ResponsiveControlling/Passing/bluffing Intimacy   Isolation Connected Presenteeism Self worth   Shame Mindful acceptanceAvoidance behaviours Getting on   Stagnation Real participationBonsai-ed Integrity   Despair GroundedFused/stuck

27 De-centring Generalised anxiety Reduced social participation Health affects Fusing Problems communicating in certain settings Problems communicating in certain settings Bonsai effect Situation specific fears Identity blurring

28 The health and social impacts position of people with acquired hearing loss

29 Health impacts of hearing loss elevated unadjusted male six year mortality rate among older males for those with uncorrected loss male elevated risk rates for diabetes high blood pressure a higher incidence of stroke increased rates of heart attack higher use of prescribed medications.

30 Health impacts Higher use of prescribed medications Those with moderate to severe hearing loss are three times more likely to see their doctor than members of the general population up to seven times more likely to require assistance in the home 15 times more likely to need assistance in activities of daily living.

31 Lots of HIPs present with reduced HRQoL Median.55

32 Health impacts

33 The Relationship Between Stress and SWB Dominant Source of SWB Control SWB Stress High Low Threshold DISTRESS Homeostasis No stressHigh stress 75 Level of environmental challenge

34 Socio-economic impacts of hearing loss Less likely to be in paid work by a minimum of at least two percentage points for adults of working age With this rate potentially being much higher in harder economic times where people with disabilities are more vulnerable to the impacts of economic downturns More likely to be on lower income than the population.

35 Social impacts of hearing loss Increased effort and fatigue Stress and anxiety Difficulties in family relations Social isolation Negative self image

36 Workplace impacts for HIP people Lost of confidence Working twice as hard Varied frustrations Hanging on Job hunting Innovating Skills development Looking for accommodations

37 Next steps

38 Do we need to learn to be affected?

39 Sometimes aids and devices aren’t enough We may need to change But at the population level the evidence shows that technology alone is not enough For individuals we need psycho-social rehabilitation But society needs to change too

40 1 in 6 really? We need change at a societal level Accessible communication venues Captions Acceptance and support for new ways of talking with each other Community education It’s no longer just a man’s world Nor is it just a hearing world either!

41 Psycho-social barriers to action Mis-perceive affects of hearing loss Reluctant to acknowledge hearing loss Fear of being stigmatised (stupid or old) Need for an engagement strategy

42 Rehabilitation Overview Patient Decision Making & Case Conference Technology based Rehabilitation Communication Strategies Therapies & Group Work Referrals Closure Audiology Engagement ENT


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