Taking part in the research
You are invited to take part in a research study conducted by the National Disability Authority (NDA). This research includes people who are Wards of Court and the Committees that act on their behalf.
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 Committee, or with family members, friends or an Advocate. Take time to make your decision and to consider the information provided. If you have any questions you can get in touch with us by phone or email.
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 the support you receive in the future.
You can change your mind about taking part in the study. Even if the study has started and you have taken part in an interview, you can withdraw from the study at any time. You don't have to give us a reason. If you do withdraw from the study, you will not experience any negative consequences as a result of your decision. Withdrawal from the study is explained more below.
What is this research study about?
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is an international treaty that Ireland ratified in 2018. The system of wardship is not aligned with the UNCRPD and therefore, the law that governs wardship which was enacted over150 years ago had to change.
The Assisted Decision-Making (Capacity) Act 2015 and amending legislation commenced in April 2023. The commencement of this legislation has started the process of ending the wardship system which must be completed in three years. The Court will determine whether a person leaving wardship can make their own decisions, can make decisions with support or whether they need someone to make decisions for them on key issues. Relevant supports and oversight of these arrangements will be through a new service called the Decision Support Service.
A system of supported decision-making, which seeks to prioritise the will and preference of people that need assistance to make decisions, will replace wardship.
The process to exit wardship will involve a High Court hearing that will discharge the person from wardship, return his or her estate and either declare that the person who was formerly a Ward of Court does not need support to make decisions or put in place an appropriate decision-making support arrangement. The Decision Support Service will oversee decision-making support arrangements where these are put in place.
Our research will review this process to see how it is working for people who are or were Wards of Court and the Committees that act on their behalf and for professionals involved in the transition from wardship and in the new supported decision-making system. This will enable us to consider whether any improvements are necessary. We plan to talk to people involved including people who are Wards of Court, and Committees and a number of relevant key informants to get their views on how the process of ending wardship is going, to identify challenges for people who are Wards of Court and others, and to find out how life is after exiting wardship.
Who is organising and funding this study?
The National Disability Authority (NDA) is organising and conducting this research. The NDA is an independent statutory body that provides information and advice to the Government on policy and practice relevant to the lives of persons with disabilities.
The research will be funded by the NDA.
Why am I being asked to take part?
You have been asked to take part because you are a person who is or was formerly a Ward of Court or are a Committee that acts on behalf of a person who is a Ward of Court or formerly held this role.
How will the study be carried out?
If you agree to take part in the study, we will arrange to interview you on two occasions. The first interview will take place before the exit from wardship. The second interview will take place at least six months after you leave wardship. If you have already been discharged from wardship the first interview will take place as soon as possible after your discharge from wardship and a follow up interview will be scheduled six months after the initial interview.
Interviews will be arranged on dates and at times that are convenient for you and in a place of your choosing. While face-to-face interviews are preferred, we can also conduct interviews by phone or on Zoom.
If you are a person who is a Ward of Court, you may opt to be interviewed on your own or if you prefer you may choose to have a person with you as a supporter. We recommend that your supporter is not the person who acts as your Committee. Your supporter could be a family member, a trusted friend, or an independent advocate.
If you wish you can of course discuss this information and the study with a family member, an advocate or the Committee that acts on your behalf. You can also contact the Project Manager by phone or email to discuss any issue relating to the study.
If you are a Committee you may be interviewed alone or with the Ward that you act on behalf of. However, please be aware that you will only be eligible to participate if the person you act on behalf of does not object to your participation in the research.
During the first interview we will ask questions about your experiences of the wardship system, the information you have received about the ending of wardship and your concerns if any about the transition to the new supported decision-making system. We will also ask you about your expectations about changes that may flow as a result of the transition from wardship.
In the second interview we will ask questions about your experience of the transition to the supported decision-making system or to independent living and seek to find out how that transition has affected your life. You will have an opportunity to tell us about any concerns you have about the new system or about any aspects that you feel need to be improved.
Questions for Committees will be similar but will focus mainly on how well the processes around ending wardship and setting up a new system are working.
What happens during the interviews?
A trained researcher will conduct the interviews. Participants who are Wards of Court and those that act as Committees for persons who are Wards of Court will be interviewed separately whenever possible. Participants who are Wards of Court can be accompanied by a supporter.
With your permission we will record the interview using a digital audio recorder. If you do not agree to an audio recording the interviewer will take notes or may bring a second person with her/him to take notes.
We will only seek to collect the information necessary to answer our research questions. The information you provide will be stored securely.
You can ask for a break at any point in the interview. You can leave or ask for the interview to be stopped at any point.
We anticipate that each interview will take about 45-60 minutes. Sometimes the interviews may take a little longer.
Audio recordings will be transcribed and then destroyed.
Withdrawal from the study
You can change your mind about taking part in the study. If you decide to withdraw from the study, you don't have to give us a reason and there will be no consequences for you.
If you decide to withdraw from the study within three months of the date of your interview, we will be able to identify, extract and delete the interview transcript and all your personal data and ensure that the information you provided during your interview is not included in the data we report.
For reporting purposes interview data will be analysed and combined under themes. If you wish to withdraw from the study after more than three months has elapsed since the date of interview, we will review your withdrawal request and whenever possible we will extract and delete your interview data. However, it may not be practical to exclude your interview data as it is likely that it will have been analysed and combined with data from other interviews. If it is not practicable to extract and delete your interview data, it will be necessary to retain your signed consent form.
If you ask to withdraw from the study more than three months after you have been interviewed, we will delete your contact details even if your interview data has not been deleted.
Please contact any member of the research team or the Data Protection Officer of the NDA if you wish to withdraw your consent. Once data has been anonymised it will not be possible to identify personal data of any individual participant.
What are the benefits of taking part in this study?
There is no guarantee that research participants will benefit from taking part in this study. However, there is the potential for benefits to participants and other people who are in wardship or are former Wards of Court as service improvements may stem from the research results. Participants may also experience a sense of empowerment as a result of their contribution to this research.
What are the risks of taking part in this study?
The risk of taking part in this study is assessed as being low.
Participants may find it upsetting to talk about their experience as a Ward of Court or as a Committee for a Ward of Court. Researchers will respond quickly to any signs of unease or upset. If necessary, researchers will end the interview and direct participants to appropriate services.
The research protocols will prioritise data security and privacy. A suite of security measures is in place to ensure that access to data is restricted and controlled. Data protection protocols will be followed at all times. Despite these measures there is always a small risk of a data breach. As your data will be pseudonymised (by removing or changing your name, the names of any other people and places mentioned and other personal identifiers) a data breach may not impact the privacy of your data. However, participants might find a data breach upsetting.
Is the study confidential?
All information provided by you will be treated as confidential and will be stored securely. Only the NDA research team has access to the project files. These are stored on a computer system with restricted access and robust firewalls.
Your interview transcript will be assigned a code and your information will be filed using this code. Interview transcripts will be pseudonymised (by removing or changing your name, the names of any other people and places mentioned and other personal identifiers). Code sheets will be deleted after the publication of the final report. This will mean that the interview data cannot be linked to individual participants. The final report will only include anonymised data. This will mean that it will not be possible to identify participants. We may use a quote of something you said in the research report but nobody will know who said it.
Your contact details will be deleted from our files once the final report has been published.
The Court has given permission for people who are Wards of Court to participate in this research.
Consent forms which contain your name will be stored electronically for two years after the end of the study and then destroyed. Any paper consent forms will be scanned and stored electronically and the paper copy destroyed.
If you disclose information that raises concerns about your safety it may be necessary to share this information with other relevant persons. Information will only be shared after discussion with the participant.
Further information about the protection of your data that we are required to supply is included in Appendix 1.
Ethical approval
The researchers involved in this study abide by ethical principles. Ethical approval for this study has been granted by the National Disability Authority’s Research Ethics Committee and a copy of the approval can be provided on request. Approval has also been granted by the Health Research Consent Declaration Committee.
Results
The results of the study will be published in one or a number of reports. The reports will be available on the website of the NDA.
The results may be presented at seminars and conferences and in journals.
There will be no information in the report that will identify you or any participant.
Future Research Studies
Data collected for the purposes of this research study will not be shared with other researchers.
Where can I get more information?
Information about the people responsible for this project is set out below.
Principal investigator
The principal investigator has overall responsibility for the study.
Name: Dr Caroline O’Nolan
Job title: Senior Research Officer
Contact: Email wardsresearch@nda.ie Phone: 087 671 2376
Data Controller
Responsible for determining the purposes, conditions and means of processing personal data.
Name: National Disability Authority
Contact: 25 Clyde Road, Ballsbridge, Dublin 04E409.
Email: info@nda.ie Phone: 01 6080400
Data Protection Officer
Provides advice and monitors compliance regarding data protection regulations.
Name: Mr Stephen Patten
Contact: Email: stephen.patten@nda.ie Phone: 01 6080400
Data Protection Commissioner
Protects the data protection rights of individuals and regulates data protection measures used by organisations.
Contact: 21 Fitzwilliam Square South, Dublin 2, D02 RD28
Phone: 01 7650100 / 1800437 737
Appendix 1: Wards of Court Research: Further information about the protection of data
Word document
DOCX
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Easy to Read Participant Information
Easy to Read PDF
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