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1. Thank you for taking the time to complete this short survey.
It should take 5-10 minutes to complete.

Study title: Caring for ageing persons with an intellectual disability - a survey of social care staff in disability services in the Republic of Ireland
 
Please see participant information leaflet and consent form below.
Participant Information Leaflet

Study title: Caring for ageing persons with an intellectual disability - a survey of social care staff in disability services in the Republic of Ireland
Principal investigator’s name:                           Fiona Smyth
Principal investigator’s title:                             Senior Physiotherapist
Telephone number of principal investigator:  0878095700
Consultant/co-investigator’s name:                 Louise Keating
Consultant/co-investigator’s title:                    Lecturer in Physiotherapy at the Royal College of Surgeons in Ireland (RCSI). 
RCSI MSc Supervisor.
Data Controller’s Identity:                                  Fiona Smyth
Data Controller’s Contact Details:                     T: 0878095700
E: fionasmyth22@rcsi.ie
Data Protection Officer’s Identity:                     Dónall King
Data Protection Officer’s Contact Details:       Data Protection Office Ireland
T: 01 402 8554
E: dataprotection@rcsi.ie
W: www.rcsi.com

You are being invited to take part in a research study to be carried out online on SurveyMonkey by Fiona Smyth, Senior Physiotherapist as part of a taught Physiotherapy master’s degree in Neurology and Gerontology with the Royal College of Surgeons in Ireland.

Before you decide whether or not you wish to take part, you should read the information provided below carefully and, if you wish, discuss it with your family, friends or GP (doctor).  Take time to ask questions – don’t feel rushed and don’t feel under pressure to make a quick decision.

You should clearly understand the risks and benefits of taking part in this study so that you can make a decision that is right for you. This process is known as ‘Informed Consent’.

You don't have to take part in this study.  If you decide not to take part it won’t affect your future medical care.

You can change your mind about taking part in the study any time you like.  Even if the study has started, you can still opt out.  You don't have to give us a reason.  If you do opt out, rest assured it won't affect the quality of treatment you get in the future.

Why is this study being done?
In Ireland, people with an intellectual disability (ID) are predominantly supported by voluntary organisations funded by the Health Care Executive (HSE).  These organisations provide support for all levels of ID across a range of settings including residential and day care.  Persons with an ID present with age related changes at different stages to the general population.  They can often have co-morbidities and complex needs. 

As primary support for adults with an ID, non-nursing frontline staff are often the first staff group to identify signs of frailty.  For this to be effective, staff need to have the relevant knowledge to recognise the signs of frailty in this population and know the correct referral pathways to follow.  In doing this, those with age related issues may receive timely interventions to manage and monitor changing needs and in turn improve their quality of life.
The aim of this study is to examine care staff knowledge, awareness and professional confidence when caring for frail persons in the ID population in day and residential disability services.

Who is organising and funding this study?
Fiona Smyth (principal researcher) is undertaking this study as part of a taught Physiotherapy master’s degree in Neurology and Gerontology in RCSI, under the supervision of Louise Keating, Lecturer in Physiotherapy at the Royal College of Surgeons in Ireland (RCSI). 

No funding is being received by the researcher for this study.

Why am I being asked to take part?
You are being asked to participate as a social care worker supporting adults with an intellectual disability.  We are looking for social care workers who work in disability services provided by organisations who are members of the National Federation of Voluntary Service Providers in Ireland.   The answers provided by participants will help to determine social care staff knowledge of signs of ageing with an ID and enable comparisons to be made in different sub-groups e.g. workplace settings (day/residential services), years of experience etc.

How will the study be carried out?
The survey will be open from October 2023.  It will take between 5 and 10 minutes to complete.  Minimum participant recruitment for the survey is 384.  The survey will be hosted by SurveyMonkey, online platform.

What will happen to me if I agree to take part?
If you agree to take part, you will be asked to complete an online survey.  No personal data is required as the survey is completely anonymous. 

What are the benefits?
Taking part in this study will help determine social care workers’ knowledge and management of frailty signs in ID.  This information could inform organisations about training requirements in this area which may help to improve staff awareness when providing care for those ageing with an ID.

What are the risks?
There are no anticipated risks to participants who choose to complete the survey.

You can leave the study at any time, before submitting the survey.

If participants would like to receive further information, please email the researcher (fionasmyth22@rcsi.ie)

Will it cost me anything to take part?
No cost is associated for participants taking part in the study.

Is the study confidential?
Yes, the information gathered by the survey has no personal details and is therefore anonymous.  Electronic data that is gathered from the survey will be stored in a secure online folder in the RCSI One Drive directory, with access only by the researcher and supervisor.  The data will only be used for this study, will not be made available to other parties and will not be used for future research purposes.

Data Protection
No personal data will be processed during the study.  The anonymous data collected by the survey will be used to examine social care worker knowledge and management of ageing persons with an ID.

Respondent IP addresses will not be recorded during the survey.  Participants can withdraw consent to non-essential cookies using the in-product cookie preferences tool in SurveyMonkey.  Cookies can also be disabled within SurveyMonkey or in web browser settings.

Only the researcher and study supervisor will have access to the data.

Encrypted electronic data will be stored on RCSI’s secure network at 123 St. Stephen’s Green, Dublin. Data will not leave the European Union.

Data will be retained during the study and for 5-7 years after the completion of the study as per RCSI Research Data Management Policy 2018.
Anonymous data will be stored electronically in an encrypted directory on RCSI’s secure network. 

Where can I get further information?
If you have any questions about the study or if you want to opt out of the study, you can rest assured it will not affect the quality of treatment you get in the future. 

If you need any further information now or at any time in the future, please contact:

Fiona Smyth Senior Physiotherapist, MICSP
CORU Registered PT030445
Master’s Student in Physiotherapy Neurology and Gerontology
Royal College of Surgeons in Ireland,
123 St. Stephen’s Green, Dublin 2.

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