Parent of a Child with Limb Difference? Help Required with Valuable Research

PLEASE NOTE THAT THE RECRUITING PERIOD IS NOW COMPLETED. WE WILL PUBLISH THE RESULTS IN DUE COURSE. THANK YOU FOR YOUR INTEREST & PARTICIPATION. 

Are you the parent of a child with limb difference who has been provided with an artificial limb?

James Oliver, a trainee clinical psychologist, would like your participation in research he is undertaking as part of his studies for a Doctorate in Clinical Psychology at Lancaster University.

There is very little research exploring parents first hand experiences and we hope the research can help inform effective support. James Oliver

Participant Information Sheet
Title: Exploring the experiences of being a parent of a child with limb difference who has been provided with an artificial limb.

What is the study about?

The study is looking to interview parents of children with limb difference aged between 5-16 years old who use, or have available to use, an artificial limb. There is little research exploring parents lived experiences of parenting a child with limb difference, and little regarding the prosthetic rehabilitation process. Therefore, this study is looking to address this gap, and give a platform for parents to speak about their experiences. To take part your child must have had the availability of a prosthesis for a minimum of 6 months.

What will I be asked to do if I take part?

You will be asked to take part in an interview lasting approximately 45 minutes to an hour with the lead researcher, James Oliver. This interview will be audio recorded and you will be asked about your experiences. These experiences will be unique to you, but as a general guide may involve questions exploring your parenting experiences, the prosthetic rehabilitation process, any challenges you have encountered, and how you have managed and made sense of these experiences.

This interview will be arranged with you and can be completed via Skype, telephone or possibly in person if based in the North-West of England, UK. Please note that Skype interviews are not wholly secure due to the nature of the platform. However, Skype have an encryption process in place and further information around Skype’s security can be found at: https://www.skype.com/en/security/#encryption

Do I have to take part?

No you are under no obligation to take part.

Will my data be Identifiable?

The information you provide is confidential and all data collected will be anonymised. The typed version of your interview will be made anonymous by removing any identifying information including your name. A pseudonym (false name) will then be used for any direct quotations used in the write-up of the study.

The data collected for this study will be stored securely. Only the lead researcher, James Oliver, will have access to participant interviews, which will be stored electronically on a secure drive. The research supervisor, Dr Craig Murray, will have access to anonymised interview transcripts. All files relating to the study will be password protected and encrypted and kept on Lancaster University’s secure server to ensure confidentiality. At the end of the study, electronic copies of anonymised transcripts will be kept securely for 10 years at Lancaster University in line with university policy. At the end of this period, they will be deleted. Audio recordings will be deleted once the project has been submitted for publication/examined.

There are some limits to confidentiality; specifically, if something said in the interview indicates that you or someone else may be at risk of harm. In which case, the lead researcher has a duty of care to pass on that information to relevant agencies to ensure your or the person’s safety. If possible, I will tell you if I have to do this.

What will happen to the results?

The results will be written up into a research paper and will be assessed as part of the lead researcher’s Doctorate in Clinical Psychology qualification. It may be decided to submit the report to a peer-reviewed journal, which if published, can be accessed via the internet. You will be offered a copy of the final research paper or summary of the findings once they have been written, to see how your input contributed to the findings.

Can I withdraw from the study?

Your participation in the study is voluntary and you are free to withdraw at any point prior to commencing the interview without giving any reason. Once the interview has been completed, you can withdraw your data for up to 2 weeks after the interview. After this time, the data may be analysed and incorporated into themes. Therefore it may not be possible for it to be withdrawn after this time.

Are there any risks?

There are no risks anticipated with participating in this study. However, if you experience any distress following participation, you are encouraged to inform the researcher. The debrief sheet also contains resources which can provide further support.

Are there any benefits to taking part?

There are no direct benefits to you for taking part. However, it is hoped by sharing your experiences it will help support other parents of children with limb difference, by giving an understanding of some of the experiences they may encounter and the feelings associated with this. It is also hoped the results can help healthcare professionals working with the parents of children with limb difference, to help them understand parent’s experiences, and ensure any support provided is based on parents first hand experiences. If required, reasonable travel expenses will be paid up to a maximum of £20.

Who has reviewed the project?

This study has been reviewed by the Faculty of Health and Medicine Research Ethics Committee, and approved by the University Research Ethics Committee at Lancaster University.

Where can I obtain further information about the study if I need it?

James Oliver
Doctorate in Clinical Psychology Furness College
Lancaster University
Lancaster
LA1 4YG
To see the original document, please go to: http://www.lancaster.ac.uk/shm/study/doctoral_study/dclinpsy/research/jamesoliver/