PARTICIPANT INFORMATION SHEET
An exploration of ‘positive aspects of parenting’for family carers/parent carers who support a child or an adult with a learning disability
You are being invited to participate in a research study. Before you decide if you wish to participate, it is important for you to understand why the research is being carried out and what it will involve. Please take time to read the following information carefully. Talk to others about the study if you wish and please do not hesitate to contact the researcher if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part. Thank you for reading this.
What is the purpose of this research?
Although the stress of being a parent/carer is undeniable, there are agrowing number of studies which have focussed on the positive contributions and the rewards experienced by parent/carers. These studies have mainly focussed on carers looking after an older person,and there have been very few studieswhich have explored thepositive aspects of parenting a child or adult with a learning disability.However, it is not clear what elements contribute to being a ‘positive aspects of parenting’ as the explanations are not clearly defined and are interpreted differently between the studies.
Therefore, this study aims to explore, interpret and understand what family/parent carers for a child or an adult with a learning disability consider to be a ‘positive aspect’in their own words.
The researcher undertaking this study is the parent of a child with a learning disability and the study is being completed as part of a doctoral research degree at London South Bank University.
Why have you been invited to take part?
You have been invited to participate in this study as you are a family/parent carer for a child or an adult who has a learning disability. It is anticipated that in total around 30-50 parent/carers will participate in individual interviews and it is anticipated that these will be completed by June 2014.
Do you have to take part?
It is up to you to decide whether or not to take part. If you do, you will be given this information sheet to keep and also be asked to sign a consent form. You will be free to withdrawfrom the study at any time up to completion of the interviews without giving a reason, however, if you decideto withdraw after this time, it will not be impossible for the researcher to comply.
What will happen to me if I take part?
You will meetwith the researcher for one interview lasting approximately an hourto an hour and a half at a suitable location on a mutually agreeable date and time. This interview could take place within your own home, at the University, or at the offices of a local voluntary sector organisation. At this interview, the researcher will explore individual perceptions, meanings and examples of what you consider to be ‘positive aspects’ of parenting a child or adult with a learning disability. For ease of later analysis, this meeting will be audio recorded with your permission as well as the researcher taking notes.
What are the possible risks or benefits to you in taking part?
It is not anticipated that you will be disadvantaged or suffer any risk from participating and it is unlikely that you will gain any personal benefit from participating in this research. However, some individuals may gain some benefit from having the opportunity to discuss this topic with a receptive listener.
Should you become upset, the interview will be stopped immediately. You will be given the opportunity to discuss the reason behind being upset, given to time to refocus and then asked if you wish to continue. If you decide not to continue at this time, you will be offered the opportunity to recommence the interview at another time. If you become distressed and require further support, the researcher will help you to find appropriate support (for example a local carers group).
What happens to the information in the project?
All personal data will be processed in accordance with the provisions of the Data Protection Act 1998. All information received from you will be kept and stored in a strictly confidential manner and any information about you (e.g in reports and publications or is shared with a supervisor) will have your name and address removed and will be coded so that you will not be identifiable in any way. This information will be kept on an encrypted memory stick which will be stored in a locked filing cabinet and on a password protected computer in an environment locked when not occupied. Only the researcher and supervisors will have direct access to the information.
If you wish, you will receive written feedback on themes identified as ‘positive aspects’(across the whole group)after all the participating parent carers have been interviewed and the study is completed. You will also be informed if there are any reports or publications which result from this study.
Information collected from you will be held until December 2020 until the degree has been completed and any research papers published. It will then be destroyed.
Who has reviewed this study?
This study has been reviewed and ethically approved by the London South Bank University research ethics committee.
Contact for further Information:
If you have any questions about any aspect of this study, please contact the researcher Carole Beighton by phone:0207 815 8351, (mobile);07932091560or by email .
If you feel you need to raise a concern or complaint about the way you have been dealt with during the study, you can contact the academic supervisor, Professor Nicola Crichton at London South Bank University on 0207 815 6742 email: .
If you still have concerns or wish to contact an independent person, please contact the Chairperson of the Research Ethics Committee at London South Bank University by email:
Thank you for reading this information and considering taking part in this study.
London South Bank University, 103 Borough Road, London, SE1 0AA