Adoption is changing in England. There is a new focus on openness . Openness can mean different things to different people, like having more information about your birth family, or having more opportunities to have a relationship with them, or being able to talk more about adoption. There are also new kinds of adoption support, including access to therapy for young adoptees, and support to meet birth family. However, we do not know how these interventions affect adoptees’ quality of life.

Research questions:

1. Which themes matter most to the Quality of Life of adoptees aged 16-25?

2. How can we develop our measure of quality of life so that: (a) the questions comprehensively cover all the themes that are important for adoptees; and (b) the results are reliable and accurate?

3. Based on all available evidence, how can we best measure Quality of Life in adoptees aged 16-25?

The main investigator for this research is Nick Burke, and this work will contribute towards their PhD.

The research project is exploring how you think about your quality of life. Sometimes, research explores these ideas from the outside by measuring outcomes for adopted people or asking their adoptive parents. However, I am interested in what adoptees themselves think about adoption, and what is important to them.

You will complete a survey about your quality of life. The project is overseen by a project advisory group which includes people affected by adoption in different ways, plus researchers and practitioners.

You can choose whether you want to take part or not. You can withdraw at any time. You do not need to explain why. Taking part will not affect whether or not you receive any support. There is no advantage or disadvantage in being part of the study. To withdraw from the study, simply email me (Nick Burke) or my supervisor on the details at the bottom of the page. Withdrawal is effective immediately and you do not have to give any reason for withdrawal. If your data has already been anonymised, it may not be possible to identify you from our records. However, every reasonable endeavour will be made to comply with a request to withdraw data. If you contact me within 2 weeks then your individual responses will still be distinguishable and I will be able to withdraw your data.

You will complete an online survey about your quality of life. If you give your consent to be contacted again, you will then be re-contacted around 2 weeks later to complete a follow-up survey.

When you complete the survey, you will be thinking about your own experiences of adoption. I have designed and tested the questions in order to minimise any distress caused by this. However, there is a possibility that you may experience unexpected or unwanted emotional responses to the topic of discussion. Please get in touch with me if you experience any distress and I will help you access support.

If you need further support, I can also help you to contact post-adoption support services via your local authority, or another support person such as PAC-UK if you prefer. If you are unhappy with any aspect of the research, or if there is a problem, please feel free contact me or my supervisor. Alternatively, if you wish to speak to somebody who is independent of the research project about any matters concerning good research practice (e.g. what constitutes good practice, what constitutes unacceptable practice, safeguarding matters, and information on existing support resources) you can contact Mrs Lindsay Unwin, Research Ethics & Integrity Manager in Research Services: l.v.unwin@sheffield.ac.uk / 0114 222 1443

All data will be stored on a secure University encrypted drive. Interview data will recorded, before being anonymised and transcribed. This means that any articles or other outputs describing the research will not include identifiable information about you.

It is important, for transparent and reproducible research, that researchers can scrutinise how this research project has been carried out and improve on that work. This could involve, for example, re-analysing survey data in order to test how reliable it is. The final adoptee quality of life measure, with accompanying appendices including fully anonymised and non-identifiable survey completion data and code for analysis, will be publicly posted on the Open Science Framework project page as a research output using licence CC BY-NC-SA 4.0. This means other researchers are free to use the anonymised data to reproduce or scrutinise the findings. No identifiable data will be shared in this way. Personal data only be stored on encrypted University systems as long as is needed to convert it to anonymised form, and not longer than 3 months.

I will not share what you say with any other professionals. However, if you tell me something during the research and this indicates that there is a risk that you or other people might be harmed, I have a responsibility to follow the University’s safeguarding procedures and report this to the Designated Safeguarding Contact, Michaela Rogers. I may also have a responsibility to share this with safeguarding or law enforcement professionals unless doing so would cause more harm. I will tell you if I have a concern like this, unless this puts either you or others at further risk.

Survey data will be anonymised and collected in spreadsheet form. These data will help me understand the properties of the survey and how it might be improved, to better capture adoptee quality of life. If you take part in the follow-up survey, these responses will be compared with the original responses to see whether results are consistent, which will help me understand how reliable and accurate the survey is for measuring adoptee quality of life.

The sponsor of the research is University of Sheffield. University of Sheffield is also the Data Controller. All other organisations involved in funding, promoting or recruiting research participants will be under the instruction of University of Sheffield. Data are stored, processed and analysed using University of Sheffield systems and participating organisations (NIHR, PAC-UK, Adoption England and Regional Adoption Agencies) do not have access to these data. More information about University of Sheffield research ethics and integrity can be found here: https://www.sheffield.ac.uk/rpi/ethics-integrity and if you have any concerns about data use you can contact the Data Protection Officer dataprotection@sheffield.ac.uk

Data are processed under the following lawful basis: Article 6 UK GDPR (personal data) - Public task; Article 9 UK GDPR (Special Category data) - Research.

If you choose to withdraw from the research, all identifiable data will be deleted. However, your data may be retained if it has been anonymised and is no longer identifiable to the research team.

Results of the research will inform the development of a measure which can be used to assess adoptee quality of life. Results will also be submitted as part of my doctoral project, and may be written up and published in academic journals or presented at academic conferences. I invite you to let me know if you wish to receive a copy of the write-up. There will also be materials for training people who support adoptees in how to use the measure, and a short video for public release describing the research results.

This research is funded by a National Institute for Health and Care Research (NIHR) Doctoral Local Authority Fellowship (Grant Reference Number 303073) which is hosted by the University of Sheffield. This means that University of Sheffield is the sponsor, and all research data are processed using University of Sheffield encrypted systems. Neither NIHR nor any other participant organisations have access to this research data.

Research is looked at by an independent group of people, called a Research Ethics Committee, to protect your rights, safety, well-being and dignity. This study has been reviewed and granted a favourable opinion by West Midlands- Coventry & Warwickshire NHS Research Ethics Committee. Research governance is hosted by the University of Sheffield. 

Please see the contact details below, you are invited to stay in touch.