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 explores how adoptees aged 16-25 think about their quality of life. It is useful to have a range of points of view on this, from different people affected by adoption, to improve the quality of the research. This includes adoptive parents, birth parents and adoptees aged 25+.

You will attend a focus group with a group of 3-6 people. This will be a mixed group of adopters and birth parents and some adult adoptees. You will talk together about what is important to the quality of life of adoptees. This will take around 2 hours. The project is overseen by a project advisory group which includes people affected by adoption in different ways, plus researchers and practitioners. You will be offered a £15 voucher in recognition of your contribution to the research.

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 be invited to take part in a focus group to discuss what is important to adoptee quality of life. This will be a mixed group including birth family members, adopters and adoptees aged 25+ talking with a researcher. I will also have art materials available if you prefer to share your experiences in this way by writing, drawing, doodling or collaging if that is more comfortable than talking. If you want to, you can bring in a photo or object that is important to you, to help explain to me about your experiences.

The focus group will be confidential. This means that you must not talk to anyone outside of the group, or share anything online, about anyone else in the focus group, or about anything they say. Other people in the focus group also agree to not share anything about you.

You are likely to be thinking about or sharing your own experiences of adoption. I intend to create a safe and supportive space for you to do this, and to minimise distress. However, there is a possibility that you may experience unexpected or unwanted emotional responses to the topic of discussion. Research sessions will include an introduction at the beginning and a de-brief at the end, so that I can check in with you. You can take a break, decide whether or not you wish to carry on or rearrange the session, and you will be able to indicate if there is something you do not wish to be included in the research project. 

As this is a mixed group, I need to make sure that adoptees, birth family members and adopters who are connected to each other either by birth or adoption do not meet for the first time in our focus group. I will ask you to provide the date of birth and place of birth of the adopted person(s) (whether that is you or your relative), so that I can check that these do not match before I invite you to a focus group. If you arrive at a focus group and recognise someone, you should immediately request a private discussion with me, outside the room.

Each focus group is supported by me (Nick Burke) plus another research trained co-facilitator who is a person who has been affected by adoption, or is care experienced. If you need to have a break or become upset and wish to leave the room, you can make me aware of this and the co-facilitator will be able to leave the room with you and offer 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. Focus group and interview data will recorded, before being anonymised and transcribed. High quality photos of any creative output from the focus groups will be immediately uploaded to secure storage. 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.

The focus group will be audio recorded, and I will take photographs of any creative artwork you have made. If you bring in a photo or object to share, I can either take photographs or if you prefer just a written description of the object or photo. I will also take some researcher notes during the focus group. The audio recordings will be transcribed and I will look for themes in the data, that help make sense of 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

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.

It may be that some photos or recordings would be helpful to include in training materials or a short video to share the findings of the research. These would be more identifiable and I am not asking for your consent for this kind of use here. However, if I identify data that may be helpful in communicating research findings effectively to a wider audience, I will contact you to discuss further and you will have a choice about whether to consent to this use of your data.

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.

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.