Research: decision making in cleft lip and/or palate treatment

January 25, 2017

Would you be interested in taking part in research into decision making in cleft lip and/or palate treatment?

If the answer is yes, we would be interested in hearing from you!

We are looking for people who would be willing to discuss their experiences of decision making, or supporting decision making in cleft lip/and or palate treatment.

We are conducting an online study into these experiences and doing a series of interviews.

If you would like to take part or would like some more information, please email Dr Alyson Norman for more details [email protected]

As a thank you, you will be entered into a prize draw to win a £50, £25 or £10 Gift Card for Amazon, iTunes or a High Street voucher.

There is also a survey available that can be completed by parents of children with cleft lip and/or palate: https://www.surveymonkey.com/r/cleftparents

And also a survey that can be completed by healthcare professionals involved in the care of individuals with cleft lip and/or palate: https://www.surveymonkey.co.uk/r/clefthealthcareprofessionals

 

What is the study about?

The research aims to better understand the role children and young people with cleft lip and/or palate play in making decisions about the continuing treatment. The interviews will be used to look at the kind of things which emerge as important for the individual; and to identify common themes emerging across interviews with different participants.

What will be expected of me as a participant?

You will be asked to take part in a semi-structured interview, with questions relating to your own experience as someone with cleft lip and palate, or a medical professional or family member of someone with cleft lip and palate, and your experiences of treatment and decisions surrounding treatment. The interview is designed to allow you to talk about your own feelings and thoughts around this, and there are no right or wrong responses.

What are the risks and benefits?

There are no physical risks associated with this research. The interview will be asking you to talk about your experiences and feelings in relation to a sensitive topic, however, and so involves the risk of psychological distress.

Little research has been conducted into the role of children and young people’s decision making in treatment for cleft lip and/or palate. We hope that this research will identify the issues which are significant to children and young people with cleft lip and/or palate, and that this may be useful to guide support for families going through treatments in the future.

Will it be confidential?

All information given within the interviews will be confidential. Consent forms will be kept separately to the data collected, and the data itself will be anonymised. All hard data will be kept in locked cupboards and electronic data in password protected computers. That data will be kept for ten years in line with University policy.

Will it be anonymous?

All transcripts will be anonymous. The data collected from this study will be used to further understanding of their experiences of children and young people surrounding their treatment for cleft lip and/or palate. However, no names will be used when disseminating the research findings.

Can I withdraw?

You have the right to withdraw at any point before or during the interview. In addition, any data we collect – the audio recording and transcription of this recording – will be used only with your permission. If you wish to withdraw this data after the interview you are free to do so, through informing the interviewing researcher, or contacting the Principal Investigator (named above) on the number below.

2 responses to “Research: decision making in cleft lip and/or palate treatment”

  1. I was born with a cleft palate, I didn’t choose to be born with it. I’ve had years of operations, the plastic sergeons did a great job. However school life was extremely difficult, children can be Crewl. my lip looks ok, my nose looks a little out of shape but it’s only noticeable depending on photo angles, it’s the sound of my voice that seems to bother people, not as much as it bothers me, it’s really upsetting, I work in retail so I have to deal with customers, more often it’s the older ones who when I speak they assume I’m Scottish? Not that I have a problem with scotts because I don’t, I’m from the north! it makes me not want to talk as I feel selfconcious. I’d like people to have more of an understanding about cleft/ cleft palate.

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