Please complete this survey if you live in the UK or Ireland, are 16 or over and have Osteogenesis Imperfecta (OI)
One of the themes the OI community have asked us to provide more information and resources on is Independent Living. Due to this being such a wide area covering topics from leaving home, starting a career, adapted housing, social care, benefits, to finding a PA etc we have created this survey to assist us with determing what areas are of priority to the OI Community. Please provide as much information as possible to assist us with developing a library of useful resources. There are 8 sections to this survey and it will take approximately 15 minutes to complete. All responses to the survey are anonymous and will only be accessed by the Brittle Bone Society.
Section 1: About you
What type of OI do you have ?
*
Mild
Moderate
Severe
Unsure
Level of Independence - Do you feel in control of your independence?
*
Always
Most of the time
Occassionally
Not at all
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Section 2: Care and Support
In this section we want to find out about the level of care and support people with OI receive or if there are gaps that need to be addressed.
Do you receive any practical help on a regular basis which is not paid for? (what we mean by practical help is: household chores, gardening, shopping, dressing etc)
*
Yes, from someone living in my household
Yes, from someone living in another household
No
On average, how many hours a week do you receive help which is not paid for?
1 - 10
11 - 20
21 - 30
31 - 40
41+
None
Do you receive any practical help on a regular basis which is paid for (this could be funded for example: privately, local authority etc?)
*
Yes
No
On average, how many hours a week do you receive help which is paid for?
1 - 10
11 - 20
21 - 30
31 - 40
41+
None
Are these hours flexible
*
Yes
No
Not Applicable
Do you feel the amount of hours of support you recieve (whether paid for or not) is?
Enough
Not enough
Too much
I would like the amount of hours I receive to be flexible
Not Applicable
How is your care support currently funded? (please tick all that apply)
Privately
Local Authority
NHS
CHC
Access to Work
Other
ILF
If Other please state:
Do you have an assistance dog?
Yes
No
Do you have caring responsibilites for others with a disability or health problems?
Child
Spouse/Partner
Parent
Sibling
Other
Not Applicable
Please use this section to provide more information you feel is relevant or you wish to share on this topic of care and support. (ie personal experiences and reflections of getting a care assessment, or any support and resources you found useful or helpful in preparing for the assessment). Do you have any tips which may be useful to share with the OI community?
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Section 3: Housing
In this section we want to find out what peoples housing needs are.
What is your current housing set up?
Private Rental
Social Housing
Home Owner
Living with Family
Student Accommodation
Assisted Living
Other
How well do you think your home is designed to meet your needs?
My home meets my needs very well
My home meets most of my needs
My home meets only some of my needs
My home is inappropriate for my needs
Please tell us about any adaptations that have been carried out to your property? (answer all that are appropriate)
Yes - Internal Adaptations eg: hoists, widened doors, wet room etc
Yes - External Adaptations eg: ramps, drop kerbs, garden surfacing etc
No - Neither
If yes, how were your adaptations funded?
Privately
Local Authority
Landlord
Other
Please use this section to provide more information about the adaptations you have carried out. (you may wish to list the range of adaptations you have and use and/or provide useful tips for other in the OI community)
Please use this section to tell us about your experiences of getting funding for adaptations, and/or anything you feel would be useful to share with the OI community.
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Section 4: Equipment
In this section we would like to know what the equipment needs are for individuals with OI and how equipment is funded.
Please tell about any equipment you currently use to assist with daily tasks?
Hoist
Transfer Boards
Profiling Bed
Specialised Mattress
Stair Lift
Ramps
Manual Wheelchair
Powered Wheelchair
Walking Aid
Grabbers
Electronic gadgets (ie Alexa)
None of the Above
Other
If you have ticked other please provide more information.
If you do use equipment in your daily living, how was your equipment funded (you can tick all that apply)
Privately
Local Authority
NHS
Charity
Access to Work
Other
If you have ticked other please tell us who.
Please use this section to tell us about your experiences of getting any of above funded.
Please use this section to provide more information. Do you have any useful tips to share with the OI community. Have you found a particular piece of equipment really useful which isn't listed above.
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Section 5: Travel & Transport
Please think of this in a Pre-Covid Pandemic context when answering these questions.
Thinking about getting out and about outside your home, which of the following statements best describes your situation? (you can include getting around by yourself or with help from someone else)
I can get to all the places that I want to
At times I find it difficult to get to all the places that I want
I am unable to get to all the places that I want.
I do not leave my home
What means of transport do you use on a regular basis? (tick all that apply)
Drive Independently
Have someone else drive you
Taxi
Bus
Train
None
Other
If you tend not leave your home or use transport, please tell us why. Is there anything that could be done to provide you with more assistance/support.
How confident are you to travel overseas?
Very confident
Not very confident
Somewhat confident
Not confident
Please use this section to provide us with more information about your travel experiences. Do you have useful tips you would like to share, or alternatively tell us why you do not like to travel.
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Section 6: Socialising
In this section we are trying to find out what impact independent living has on individuals emotional wellbeing.
Which of the following statements best describes how you spend your time? (please think pre-covid)
I'm able to spend my time as I want, doing things that I value or enjoy
I do some of things I value or enjoy with my time but not enough.
I do none of the things I value or enjoy.
If you feel you do not do things you value or enjoy, please provide some information on what could be done to provide extra support.
Relationships - Do you find it easy to form relationships with others?
Yes - very much so
Yes to some extent
Not especially
Not at all
Are you satisfied with the relationships you have in your life?
Yes - very much so
Yes to some extent
Not especially
Not at all
Please use this section to provide more information (ie does your mental health and wellbeing effect how you socialise, do you have a fear of going to certain places incase of fracturing or maybe you have some helpful tips you would like to share.....?)
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Section 6: Work and Careers
In this section we would like to know if having OI has an impact on peoples career and career choices.
Please state your highest level of education?
School Leaver
College Course/Diploma
Degree
Post Graduate
Employment Status
Student
Unemployed
Self-Employed
Employed
Retired due to ill health
Retired
If you are retired, or left work early due to ill health what age were you?
18 - 30
31 - 40
41 - 50
51 - 60
60 - 65
65+
Do you volunteer?
Yes
No
If employed how many hours a week do you do?
1 - 10
11 - 20
21 - 30
31 - 40
41+
Not Applicable
If you volunteer how many hours a week do you do?
1 - 10
11 - 20
21 - 30
31 - 40
41+
Not Applicable
If employed, do you receive Access to Work support?
Yes
No
Please use this section to provide more information or to share any useful tips. For example tell us about your experiences of Access to Work, or experiences with workplace adjustments?
Please use this section to tell us if having OI had an impact on your Career Choice.
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Section 7: Other Information
Please indicate in order of preference which topic area is most relevant to you 1 being least important and 5 being most important
1 - Not Important At all
2 - A little Important
3 - Indifferent
4 - Quite Important
5 - Extremely Important
Social Care (including info on benefits, assessments and carers)
Equipment
Housing
Adaptations
University
Careers and Workplace
Travel
Socialising and Relationships
Please indicate in order of preference which topic area you think the BBS should priortise developing resources on.
1 - Not Important At all
2 - A little Important
3 - Indifferent
4 - Quite Important
5 - Extremely Important
Social Care (including info on benefits, assessments and carers)
Equipment
Housing
Adaptations
University
Careers and Workplace
Travel
Socialising and Relationships
Are there any topics in relation to Independent Living not mentioned above that you would like to suggest?
Is there any information you would like to share with other OI’ers that you feel would be useful in relation to Independent Living? (ie useful tips, website links/resources that we could share)
Is there any thing else in general or other areas you feel the BBS should be looking at alongside our current provision of wheelchairs and equipment, factsheets, events/webinars, general support, awareness raising, research, policy and campaigns?
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Section 8: About You
Age
16 - 17
18 - 30
31 - 50
50 - 64
65+
Gender
Male
Female
Transgender
Non-binary
Prefer Not to Say
Please choose one
Marital Status
Married or in a co-habiting relationship
Single
Divorced
Separated
Widowed
Other
Please choose one
Where do you live?
Scotland
England
Wales
Northern Ireland
Ireland
Please state whether you would be happy for us to use any of your statements in BBS publications (Please note all information provided is anonymous)
Yes
No
Where did you hear about this Survey?
Facebook
Twitter
Instagram
Website
Newsletter
Other
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