emotional support for sight loss mhairi thurston university of abertay, dundee

Emotional support for sight Emotional support for sight lossloss

Mhairi Thurston Mhairi Thurston University of Abertay, DundeeUniversity of Abertay, Dundee

What kind of emotional impact is commonly reported?

•Depression

•Anxiety

•Social Isolation

•Reduced well being

What are the specific challenges facing people with acquired sight loss?

•Diagnosis

•Degenerating sight

•Loss

•Changing identity

•Rehabilitation

•Being treated differently by others

Being diagnosed with a Being diagnosed with a serious sight conditionserious sight condition

• ““The main thing was the panic. It was The main thing was the panic. It was scary.”scary.”

• “ “You’re told you’re going blind and You’re told you’re going blind and they boot you out the door.”they boot you out the door.”

• ““Nobody ever said, ’How are you Nobody ever said, ’How are you going to manage?”going to manage?”

Coping with deterioration of Coping with deterioration of sightsight

• ““You are always having to adjust and readjust.”You are always having to adjust and readjust.”

• ““It’s like you get a remission with loss of vision It’s like you get a remission with loss of vision and then you get a drop and that’s traumatic. and then you get a drop and that’s traumatic. You think, ”Is this going to be it?” and then it You think, ”Is this going to be it?” and then it levels out again for a long time and I mean it levels out again for a long time and I mean it just went on like that. It just went on and on.”just went on like that. It just went on and on.”

• ““Your life grinds to a halt. It took me to the Your life grinds to a halt. It took me to the brink.”brink.”

Experiencing lossExperiencing loss

• ““I just can’t do the things I used to I just can’t do the things I used to do. That’s it. Every day’s the same.”do. That’s it. Every day’s the same.”

• “ “You lose all the time. You lose your You lose all the time. You lose your independence, you lose your pride independence, you lose your pride and you lose your self esteem.” and you lose your self esteem.”

• ““You lose everything in a oner.” You lose everything in a oner.”

Experiencing changed Experiencing changed perceptions of selfperceptions of self

• ““You feel a bit second class.”You feel a bit second class.”

• ““I feel like a leper. I should go around I feel like a leper. I should go around with a label saying unclean.”with a label saying unclean.”

• ““You’re on the bottom rung and you You’re on the bottom rung and you can’t get off it.”can’t get off it.”

Experiencing othersExperiencing others

• ““People have all got problems, but ours are People have all got problems, but ours are visible. People say ‘There’s that blind guy’. visible. People say ‘There’s that blind guy’. You can’t hide blindness.”You can’t hide blindness.”

• ““The general public treat you differently, The general public treat you differently, because they don’t understand. They don’t because they don’t understand. They don’t understand sight loss.”understand sight loss.”

• ““People talk to my husband when we’re People talk to my husband when we’re together. They seem to think that because my together. They seem to think that because my sight’s gone, that someone took my brain sight’s gone, that someone took my brain along with it.”along with it.”

Experiencing rehabilitationExperiencing rehabilitation

• ““You don’t want to accept the fact You don’t want to accept the fact that you have a sight problem.”that you have a sight problem.”

• “ “It’s a journey, isn’t it. You have to It’s a journey, isn’t it. You have to take it at your own speed.”take it at your own speed.”

• ““Its like another step along the way. Its like another step along the way. Another nail in the coffin.”Another nail in the coffin.”

What are common coping What are common coping strategies?strategies?• ““You don’t die of it.”You don’t die of it.”

• ““You can’t say, ‘Oh well, I’ve got it, I’ll just You can’t say, ‘Oh well, I’ve got it, I’ll just act like a dummy.’ I just say, ‘Well, I’ve act like a dummy.’ I just say, ‘Well, I’ve got it and I’ll just carry on the way I am. got it and I’ll just carry on the way I am. Just look at what I can do. Just keep Just look at what I can do. Just keep going.”going.”

• ““I actually think that RP has given me not I actually think that RP has given me not just taken away. It has given me things I just taken away. It has given me things I wouldn’t have had if I hadn’t had RP.”wouldn’t have had if I hadn’t had RP.”

A transitional process from A transitional process from sight to blindnesssight to blindness• point of diagnosis –shock/ panic/ disbeliefpoint of diagnosis –shock/ panic/ disbelief• no outward signs of sight loss- resistance to no outward signs of sight loss- resistance to

rehabilitation/hiding sight loss/desire for life to rehabilitation/hiding sight loss/desire for life to remain unchangedremain unchanged

• point of impact- enforced life style changes due point of impact- enforced life style changes due to sight loss (e.g. loss of driving license)/loss to sight loss (e.g. loss of driving license)/loss stagestage

• rehabilitation-outward manifestations of sight rehabilitation-outward manifestations of sight loss (e.g. white stick, guide dog)/change in loss (e.g. white stick, guide dog)/change in perception of self/ change in perception by perception of self/ change in perception by others/emotionally challenging others/emotionally challenging

• acceptance-re-conceptualisation of self/conditionacceptance-re-conceptualisation of self/condition

What about formal What about formal counselling?counselling?• ““Counselling is for the weak willed. People who Counselling is for the weak willed. People who

don’t want to help themselves.”don’t want to help themselves.”

• ““Counselling is not being able to cope.”Counselling is not being able to cope.”

• ““I know that counselling’s not going to help me. The I know that counselling’s not going to help me. The only thing that’s going to make you feel better is only thing that’s going to make you feel better is getting your eye sight back.”getting your eye sight back.”

• ““They say they understand but they don’t. How They say they understand but they don’t. How could you? Walk about in darkness for a month and could you? Walk about in darkness for a month and then come back and tell me.”then come back and tell me.”

• ““The problem is who is doing the counselling. If it’s The problem is who is doing the counselling. If it’s a sighted person then it’s a waste of time.”a sighted person then it’s a waste of time.”

However….However….

• ““At the point of telling somebody At the point of telling somebody there’s nothing that can be done, there there’s nothing that can be done, there should be a counsellor in the room.”should be a counsellor in the room.”

• ““I’ve always maintained that there I’ve always maintained that there should be a counselling service should be a counselling service alongside an eye clinic. Somebody alongside an eye clinic. Somebody should be there if people need them.”should be there if people need them.”

RNIB Draft Group Framework for Emotional Support

Tier 3

Service/InterventionsMental health professionals i.e.Psychiatrist/Mental Health Services GP

FunctionsStatutory Health Support

Tier 2

Services/InterventionsRNIB Emotional Support ServiceAction Counselling Services (e.g. Bristol, Merseyside)Some local societies counselling provisionGenetic counselling (CCYP)Specialist support (e.g. Macular Disease Society)GP and IAPT (Improving Access to Psychological Therapies - NHS programme)Middle Step Programme (spans Tiers 1 & 2 - To be agreed)

FunctionsStructured counselling support delivered by a qualified professional, supported by an ethical frameworkAllows for - regression, acceptance, beginning and end and relief in between

Triggers into Tier 3Continued threat of suicideOther diagnosable mental health disorders* Tier 2 services might work in partnership with a Tier 3 Services if it is in the best interest of the client

Tier 1

Services/InterventionsECLOsHelplineAdvice TeamLocal info & advice servicesRehabilitation officers/ ILCOs"Finding Your Feet" programmeLocal societies"Middle Step" Programme (spans tiers 1 & 2 - To be agreed)

FunctionsInitial hearing and identification of distressListening EarNext step-signpostingChecking understanding of informationNormalisation (acknowledging where thoughts and feelings are a normal reaction for the context)

Triggers into Tier 2Suicide ideationRepeat story tellingNot taking up practical supportNot moving onDenialDepressionAnxiety•A client requesting support


Tier 1





Tier 2

Services/InterventionsRNIB Emotional Support ServiceAction Counselling Services (e.g. Bristol, Merseyside)Some local societies counselling provisionGenetic counselling Specialist support (e.g. Macular Disease Society)GP and IAPT (Improving Access to Psychological Therapies - NHS programme)Middle Step Programme (spans Tiers 1 & 2 - To be agreed)




Tier 3



Tier one, tier two or tier three?

•Counsellor or ECLO?


Tier 3



Tier 2

Services/InterventionsRNIB Emotional Support ServiceAction Counselling Services (e.g. Bristol, Merseyside)Some local societies counselling provisionGenetic counselling (CCYP)Specialist support (e.g. Macular Disease Society)GP and IAPT (Improving Access to Psychological Therapies - NHS programme)Middle Step Programme (spans Tiers 1 & 2 - To be agreed)



Tier 1




Further Further Information/FeedbackInformation/Feedback

[email protected]@abertay.ac.uk

emotional support for sight loss mhairi thurston university of abertay, dundee

Documents

acquired sight loss

experiencing loss

sight problem

serious sight

deterioration of sight

loss of vision

dundee slide

blind guy