<chap_title>The psychosocial impact of FAS questionnaire – prototype
<chap_author>Jill Taylor, Chloe Howe and Nick Miller
<p0>This questionnaire is a prototype developed by Nick Miller, Chloe Howe and Jill Taylorbased on conversations with people with FAS and with speech-language clinicians, both who had and who had not met anyone with FAS. Its purpose is to support case history taking and help gain some insights into the origins, status and beliefs around FAS for a given individual. Itaims to stimulate exploration of ways in which FAS might have affected the individual and facilitate recognition of areas of support they may need.The present version could be given to the person with the accent change to fill in themselves, but probably is better used as a guide to questioning.
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General background
1. How long have you been speaking with a different accent? ______
2. What seems to have caused your different accent?
Stroke Head trauma Other Unknown
If other please state
3. Did your accent change straight away with the stroke/head trauma/other?
4. If not right away, how long after you were diagnosed with your condition did it change?
5. How would you describe your accent before it changed?
6. How would you describe your accent now (what does it sound like to you)?
7. How do other people describe your accent now?
7. How aware are you of the accent?
Not aware Slightly aware Moderately aware Very aware Extremely aware
8. Has your awareness of the accent changed since you first acquired it?
Much more aware More aware No change Less aware Much less aware
9. What do you feel is different about your speech now? (Tick all that apply)
Faster
Slower
Softer
Louder
Slurred
Requires more effort
Difficultly with certain soundsWhich ones do you think?______
Difficulty with certain wordsWhich ones do you think?______
Difficulty giving the right tone of voiceIn what way?______
Difficulty stressing the words I want to
Other (please state)
10. Do you feel your accent changes from day to day?
No A little Moderately A lot
11. Do other people feel your accent changes from day to day?
No A little Moderately A lot
12. Have you received any help/therapy for your new accent? Yes No
These questions are about any other changes you have noticed apart from the accent
1. Have you noticed anything else that has changedapart from your speech? Tick all that apply and rate the extent to which you feel they have changed.
1=No, 2=A little, 3=Moderately, 4=A lot, 5= Severely
Mobility, walking 1 2 3 4 5
Vision 1 2 3 4 5
Hearing 1 2 3 4 5
Memory 1 2 3 4 5
Language (finding words; grammar) 1 2 3 4 5
Co-ordination 1 2 3 4 5
Fatigue/tiredness 1 2 3 4 5
Other 1 2 3 4 5
If there are other aspects not mentioned here, please add them and rate 1 to 5 as above:
2. Have the changes apart from your speechaffected any of the following areas of your life and to what extent?
Employment
Not at all Somewhat Moderately Very Extremely
Day to day life
Not at all Somewhat Moderately Very Extremely
Interests/hobbies
Not at all Somewhat Moderately Very Extremely
Socially
Not at all Somewhat Moderately Very Extremely
Other
Not at all Somewhat Moderately Very Extremely
If other please state and rate them too:
3. How much do you agree with this statement about changes apart from speech:
‘I have coped well with the changes.’
Strongly agree Agree Disagree Strongly disagree
These questions ask about the effects of the speech changes
1. How much do you feel the change in accent has impacted on you?
Not at all Slightly Moderately Very Extremely
2. How do you rate the changed accentin relation to other changes because of your condition? Tick which single one applies
It is my number one concern
It is my second most important concern
It is my third most important concern
It concerns me but is not a major factor
It doesn’t concern me
3. On a scale of 1 to 5, how much have the speech changes affected your life?
Not at all Somewhat affected Greatly affected life
1 2 3 4 5
4. If relevant: How did you feel about receiving a diagnosis of FAS?
Relieved Indifferent Devastated
1 2 3 4 5
5. Which areas of your life have the speech changes had an impact on and to what extent?
Employment
Not at all Somewhat Moderately Very Extremely
Day-to-day life
Not at all Somewhat Moderately Very Extremely
Hobbies/interests
Not at all Somewhat Moderately Very Extremely
Socially
Not at all Somewhat Moderately Very Extremely
Others
Not at all Somewhat Moderately Very Extremely
If others please state which, and rate them too:
______
6. Has talking with your family changed because of the speech changes?
No change Some change A lot of change
1 2 3 4 5
7. Has talking with your friends/colleagues changed because of the speech changes?
No change Some change A lot of change
1 2 3 4 5
8. Has talking with strangers changed because of the speech changes?
No change Some change A lot of change
1 2 3 4 5
9. How do you feel your interaction with others in general has changed due to the speech changes (tick all that apply)?
No longer speak on phone
Conversations focus on my speech disability
Everything is much slower
Everything takes more effort
People ignore you much more
Other, please state:
10. Have the speech changes affected how you feel you get on with family members?
Not at all Somewhat Moderately Very Extremely
11. Have the speech changes affected how you feel you get on with friends/colleagues?
Not at all Somewhat Moderately Very Extremely
12. Have the speech changes affected how you feel you get on with strangers?
Not at all Somewhat Moderately Very Extremely
13. How much have the speech changes affected you emotionally? (Circle the one that reflects what you think.)
Not at all Slightly affected Moderately affected Very affected Extremely affected
14. If you think they have affected you, can you say in what ways? (Tick all that apply and add more if you feel there are more.)
Poor motivation
Lonely
Frustration
Anger
Depression
Easily upset
Loss of confidence
Other, please state:
15. How well do you feel you have coped with the changes to your speech since it all started?
Very well Well Somewhat Badly Very badly
16. Which of the following emotions have an effect on how your accent sounds and to what extent?
1=Not at all, 2 =A little, 3=Moderately, 4=A lot, 5= Severely
Stress 1 2 3 4 5
Upset 1 2 3 4 5
Tiredness 1 2 3 4 5
Arguing 1 2 3 4 5
Excitement 1 2 3 4 5
Other 1 2 3 4 5
If other, please state
17. Which of the following contexts affect how your accent sounds and to what extent?
1=Not at all, 2 =A little, 3=Moderately, 4=A lot, 5= Severely
Time of day 1 2 3 4 5
Reading something aloud 1 2 3 4 5
Length of conversation 1 2 3 4 5
Singing 1 2 3 4 5
Amount of concentration 1 2 3 4 5
Other 1 2 3 4 5
If other, please state:
18. How far do you agree with the statement: ‘FAS has stopped me from doing certain things in my life’?
Strongly agree Agree Disagree Strongly disagree
19. How do you feel about the changes the accent has caused to your life?(Tick which one is most like you)
I have accepted the changes and learnt to adapt my life
I still find it difficult to accept but am learning to adapt
I cannot accept the changes
Other, please state:
20. How has the accent change made you feel? Please rate on a scale of 1 to 5.
1=Strongly agree, 2= Agree, 3=Neither agree nor disagree, 4=Disagree, 5=Strongly disagree
Self-conscious 1 2 3 4 5
Embarrassed 1 2 3 4 5
Frustrated 1 2 3 4 5
Angry 1 2 3 4 5
Depressed 1 2 3 4 5
De-motivated 1 2 3 4 5
Lonely/isolated 1 2 3 4 5
Worried 1 2 3 4 5
Lacking feeling in control 1 2 3 4 5
Lacking confidence 1 2 3 4 5
More interesting 1 2 3 4 5
Centre of attention 1 2 3 4 5
More expressive 1 2 3 4 5
Unique/an individual 1 2 3 4 5
Other, please state:
21. How do you feel about your new accent (please tick those that apply)?
Dislike it
Hard work
An inconvenience
Grateful
Protective of the accent
(as it is now part of your identity)
Makes life easier
Amused
Doesn’t bother me
Other, please state
How far do you agree with the following statements:
22. ‘If I had a stronger accent it would be more of a problem for me.’
Strongly sgree Agree Disagree Strongly disagree
23. ‘My attitude towards the accent has changed over time.’
Strongly agree Agree Disagree Strongly disagree
If it has changed: is that for the better or for the worse? Better Worse
24. ‘The accent has changed the kind of person I am.’
Strongly agree Agree Disagree Strongly disagree
25. ‘People’s awareness of FAS needs to be raised.’
Strongly agree Agree n Disagree Strongly disagree
What do you think could be done to help you?
These questions are about others’ reactions to your accent
1. Do you feel that you stand out as being ‘foreign’ in the area you live in?
Strongly agree Agree Disagree Strongly disagree
2. Do you feel the new accent has stopped you from talking to people as willingly as you would have before the accent change?
Strongly agree Agree Disagree Strongly disagree
4. How often do you feel you avoid conversation/interaction with others because of what they may say/think/do because of your accent?
Frequently Often Sometimes Seldom Never
5. What types of reactions have you had from the general public? Please rate below how frequently:
1=Frequently, 2=Quite often, 3=Sometimes, 4=Seldom, 5=Never
Negative/bad reaction 1 2 3 4 5
Positive reaction 1 2 3 4 5
Please indicate if you have encountered any of the following types of reactions, please rate how often:.
1= Frequently, 2= Often, 3= Sometimes, 4= Seldom, 5= Never
Racism 1 2 3 4 5
Interest 1 2 3 4 5
Reaction linked to poor knowledge about FAS 1 2 3 4 5
Encouraging/supportive reaction 1 2 3 4 5
Disbelief 1 2 3 4 5
Humour (positive) 1 2 3 4 5
Humour (negative – e.g. making fun of you) 1 2 3 4 5
Rude/inconsiderate 1 2 3 4 5
Other, please state
6. To what extent has the accent affected relationships with your family?
Not at all Somewhat Moderately Greatly Extremely
7. To what extent has the accent affected relationships with your friends?
Not at all Somewhat Moderately Greatly Extremely
8. To what extent do your family now view you as ‘different’ due to the accent?
Frequently Often Sometimes Seldom Never
9. How far do you agree with the following statements:
‘My family have shown concern and support following my accent change.’
Strongly agree Agree Disagree Strongly disagree
‘My family make jokes about the accent and it doesn’t bother me.’
Strongly agree Agree Disagree Strongly disagree
‘To begin with my family and friends thought I was putting the accent on.’
Strongly agree Agree Disagree Strongly disagree
‘My family are not bothered about the accent, they are just happy I am okay.’
Strongly agree Agree Disagree Strongly disagree
Are there any other observations you would like to make?
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© 2015 Jack Ryalls and Nicholas Miller