Welcome to the sixth issue of our IN: Bulletin.
This bulletin focuses on young people in research. Sam Goold, INVOLVE’s Public Involvement Officer, meets a researcher and young person from a healthy eating research project.
By Valerie Dunn
I am a researcher working on young people’s mental health at the University of Cambridge, Department of Psychiatry. I work as part of the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England, which brings together researchers and service providers to carry out applied health research to improve services.
My work focuses on mental health of young people leaving local authority care. Initially our consultations with young people about the research were informative for us but not engaging for young people. We needed to find a more innovative way to involve and interest young people in our work.
When we started our next project, devising a mental health training course for foster carers, it was essential to include the authentic experiences and opinions of young people. We decided to try film-making – about which we knew nothing!
My first step was to contact the Cambridgeshire Film Consortium, a not-for-profit film education organisation. Trish Shiel, the manager, was very keen and engaged the professionals, hired the equipment and studios and provided the cinema for the premiere screening.
We made our first animated short film, My Name is Joe, in 2012. The project was hugely enjoyable for everybody, adults and young people learned from each other and worked as a team. The film had immediate impact. As a result, the young people suggested topics for two more films, effectively setting the research agenda themselves. In 2013 we made Finding My Way, about leaving care, and last year we made Our House, about living in children’s homes.
For each film we held initial taster sessions where we visited Just Us groups, youth groups in the region for young people in care. The aim was to describe the project, enthuse young people and attract volunteers by experimenting with recording equipment, meeting the team and watching a selection of animated film snippets to illustrate the endless possibilities of the medium.
Overall 24 young people, aged 12–23, from foster care, residential homes, semi-independent and independent living, took part in the project. A core group of three were involved throughout the three years and became a central part of the team.
Most of the work took place during four-day animation summer schools in Cambridge. Through creative workshops, games and discussions young people worked closely together to explore the issues and think about what they wanted to say. Then learned a range of film, animation and sound techniques and brought their ideas to life. These workshops gave young people the time, space and skills to explore sensitive issues safely and creatively.
Although one of the main aims of the project was to produce relevant, high quality films, the production process was equally, if not more, important: we wanted the young people to learn, to work together, to feel safe, to explore ways of expressing themselves and to be fully engaged and excited.
The young people felt the creative workshop approach was vital to the success of the films in helping them to really think about what the important issues were: “It’s a must to get the ideas bouncing around, it’s not boring like just sitting talking.”
Michelle Dean, who runs activities and groups for young people in care in Cambridgeshire, pointed out that our creative and enjoyable approach was very inclusive and attracted young people who were often reluctant to join in routine activities. This is an important consideration for research too as it is always a challenge to involve so-called hard-to-reach groups.
Since taking part in the project one young person has completed a British Film Institute (BFI) Academy short film course and was singled out for special mention by the expert panel after the course. She plans to study special effects at university: “It [the project] gave me a little bit of hope in a way that I can do something with my life … Before, I thought I wasn’t good enough and now I think I can achieve something in life. It was a confidence boost and it’s helped in many ways.” Another young person is working towards music college with continued mentoring from a member of the team.
The young people won a BFI documentary award in 2014 and were finalists in the national Children and Young People Now Awards in November 2014. The films have reached a wide and diverse audience with 10,000+ views on YouTube. They are used all over the UK to train foster carers and social workers.
This very loosely-structured method relies on establishing close, trusting relationships where adults and young people work closely together. It’s democratic and the outputs can be uncertain. As a researcher it can be a challenge to remain objective. The work has been hugely enjoyable, moving and memorable. I have a deeper understanding of the issues facing young people in care and why they deserve an enormous amount of respect.
We plan other creative projects with young people in care, depressed teenagers and young people using mental health services.
You can see the films along with short Behind the Scenes films which show the teams at work:
My Name is Joe www.youtube.com/watch?v=ArBjWe3IWs0
My Name is Joe: Behind the Scenes www.youtube.com/watch?v=o17AHhi_fus
Finding My Way www.youtube.com/watch?v=L1qZggHoFmM
Finding my Way: Behind the Scenes www.youtube.com/watch?v=pgPu_iHZvL4
Our House www.youtube.com/watch?v=fs-RVgsFfcA
Our partners are Cambridgeshire County Council Young People’s Participation Service and Youth Offending Service, Spellbound Animation, Cambridgeshire Film Consortium, Sonic Sound Studios and Andy Dunn (film maker).
Contact: Valerie Dunn, Research Associate, University of Cambridge / NIHR CLAHRC East of England
Email: vjd20@cam.ac.uk
Tel: 01223 746053
By Jenny Preston and Sarah Moneypenny (member of the NIHR Young Persons’ Advisory Group)
Thanks to the support of the National Institute for Health Research (NIHR) Clinical Research Network (CRN): Children (originally known as the NIHR, Medicines for Children Research Network) set up in 2005, more than 56,000 children have taken part in almost 300 trials, many concerning novel drugs and treatments. This has had an impact on the care that all children receive. This is driving more researchers to seek the input of patients and families in the development of their work, which is leading to a transformation of the cultural and regulatory environment for children’s research. The Network has been at the forefront of patient and public involvement in research for some time. In 2006, it started its first Young Persons’ Advisory Group (YPAG) based at the Network’s coordinating centre in Liverpool. Since then, four more groups have been established in London (see article about the London YPAG), Nottingham, Birmingham and Bristol. Each group has approximately 15-20 members aged between 8 and 19 years old.
The remit of the group is to engage young people with research and to work in partnership with, and offer support to, researchers. The group provides a forum for young people to learn about, and comment on, various aspects of the research cycle from the identification of research questions to the dissemination of research findings. The group also works alongside national and European governing bodies, such as the National Research Ethics Service (NRES) and the European Medicines Agency (EMA) as well as organisations such as the Royal College of Paediatrics and Child Health (RCPCH), helping to remodel guidance they provide to researchers to help them design and deliver ethically robust research for children, as well as support researchers in the design and deliverability of their studies.
With the paediatric research community increasingly focusing on the real-world relevance of research, the influence and impact of the Young Persons’ Advisory Group is growing dramatically. This shift in culture is further evidenced by the number of researchers approaching the group for support and this includes life sciences organisations. In 2013-14 an evaluation carried out by the National Children’s Bureau (NCB) Research Centre of the group’s activities (www.crn.nihr.ac.uk/children/resources) highlighted their involvement in over 60 activities to support individual research projects. The majority of projects were medical studies (81%). Among these the most common study types were randomised control trials (28% of all recorded studies) and observation studies (27% of all recorded studies).
Also important is the need to engage researchers at the earliest stage possible in protocol development to ensure the outcomes and acceptability of the study suit the needs of patients and families. Several examples of this can be found in the highlighted evaluation report, but one particular example is of a company that approached the group to help develop informed consent documentation. The study involved investigating a therapy to help spasticity due to cerebral palsy in 8 to 18-year olds and, at a later date, 0 to 8-year olds. The company approached the group for advice and attended a group meeting not knowing what to expect. The company was pleased to leave the meeting with several different versions of informed consent/assent forms and other ideas, including the use of different technologies such as Apps. One concern of the company was discussing the delicate topic of cannabis, which is a component of the drug in the study, and was referred to as ‘plant based’ in the assent forms. The level of understanding of the group was much higher than the company expected, which encouraged much more open and frank discussions. This led to some really good outcomes, including a clear definition of the drug being tested, a revised structure for the informed consent/assent forms for different age groups, a review of diaries to be used by patients and families, and some good ideas about keeping children motivated throughout the trial with stars and certificates. The ethics committee highlighted that the assent/consent form was very good and the study rapidly received ethical approval. Shortly after the study was approved it recruited its first patient worldwide from the Evelina Children’s Hospital in London. The study is now on the way to achieving its recruitment targets.
Sarah Moneypenny, a member of the Liverpool Young Persons’ Advisory Group, highlights the importance of working alongside researchers:
“To be able to work alongside researchers and be taken seriously is really motivating….it is great to see that industry is open to involving young people in their research to develop a more patient friendly end product.”
We need to promote and develop similar collaborations and encourage as much involvement in the early stages of research development as possible.
CRN: Children has had a substantial amount of success in engaging with children and young people. The formation of the Young Persons’ Advisory Group, topic specific focus groups, and engaging with young people in schools, has enabled young people to become more involved in the research process by giving them the confidence, information and opportunities to be able to contribute at all levels. An exciting initiative to expand our work with young people is working with Sir Iain Chalmers, Coordinator of the James Lind Initiative, in the development of a young persons’ website that will sit within Testing Treatments interactive (www.testingtreatments.org). The purpose is to improve young people’s understanding of the reasons for doing fair tests of treatments, what fair tests look like, and how they and everyone else has some role to play in promoting better research for better health care. Members of the Young Persons’ Advisory Group have been integral in developing and having editorial responsibility for one or more modules within the website, which will be launched in April 2015.
For further information about the group or to find out how to access the group to support your study please contact Jennifer.preston@liverpool.ac.uk or follow the links via www.crn.nihr.ac.uk/children/pcpie/young-persons-advisory-group/
By Jenny Preston and Sarah Moneypenny (member of the NIHR Young Persons’ Advisory Group)
Thanks to the support of the National Institute for Health Research (NIHR) Clinical Research Network (CRN): Children (originally known as the NIHR, Medicines for Children Research Network) set up in 2005, more than 56,000 children have taken part in almost 300 trials, many concerning novel drugs and treatments. This has had an impact on the care that all children receive. This is driving more researchers to seek the input of patients and families in the development of their work, which is leading to a transformation of the cultural and regulatory environment for children’s research. The Network has been at the forefront of patient and public involvement in research for some time. In 2006, it started its first Young Persons’ Advisory Group (YPAG) based at the Network’s coordinating centre in Liverpool. Since then, four more groups have been established in London (see article about the London YPAG), Nottingham, Birmingham and Bristol. Each group has approximately 15-20 members aged between 8 and 19 years old.
The remit of the group is to engage young people with research and to work in partnership with, and offer support to, researchers. The group provides a forum for young people to learn about, and comment on, various aspects of the research cycle from the identification of research questions to the dissemination of research findings. The group also works alongside national and European governing bodies, such as the National Research Ethics Service (NRES) and the European Medicines Agency (EMA) as well as organisations such as the Royal College of Paediatrics and Child Health (RCPCH), helping to remodel guidance they provide to researchers to help them design and deliver ethically robust research for children, as well as support researchers in the design and deliverability of their studies.
With the paediatric research community increasingly focusing on the real-world relevance of research, the influence and impact of the Young Persons’ Advisory Group is growing dramatically. This shift in culture is further evidenced by the number of researchers approaching the group for support and this includes life sciences organisations. In 2013-14 an evaluation carried out by the National Children’s Bureau (NCB) Research Centre of the group’s activities (www.crn.nihr.ac.uk/children/resources) highlighted their involvement in over 60 activities to support individual research projects. The majority of projects were medical studies (81%). Among these the most common study types were randomised control trials (28% of all recorded studies) and observation studies (27% of all recorded studies).
Also important is the need to engage researchers at the earliest stage possible in protocol development to ensure the outcomes and acceptability of the study suit the needs of patients and families. Several examples of this can be found in the highlighted evaluation report, but one particular example is of a company that approached the group to help develop informed consent documentation. The study involved investigating a therapy to help spasticity due to cerebral palsy in 8 to 18-year olds and, at a later date, 0 to 8-year olds. The company approached the group for advice and attended a group meeting not knowing what to expect. The company was pleased to leave the meeting with several different versions of informed consent/assent forms and other ideas, including the use of different technologies such as Apps. One concern of the company was discussing the delicate topic of cannabis, which is a component of the drug in the study, and was referred to as ‘plant based’ in the assent forms. The level of understanding of the group was much higher than the company expected, which encouraged much more open and frank discussions. This led to some really good outcomes, including a clear definition of the drug being tested, a revised structure for the informed consent/assent forms for different age groups, a review of diaries to be used by patients and families, and some good ideas about keeping children motivated throughout the trial with stars and certificates. The ethics committee highlighted that the assent/consent form was very good and the study rapidly received ethical approval. Shortly after the study was approved it recruited its first patient worldwide from the Evelina Children’s Hospital in London. The study is now on the way to achieving its recruitment targets.
Sarah Moneypenny, a member of the Liverpool Young Persons’ Advisory Group, highlights the importance of working alongside researchers:
“To be able to work alongside researchers and be taken seriously is really motivating….it is great to see that industry is open to involving young people in their research to develop a more patient friendly end product.”
We need to promote and develop similar collaborations and encourage as much involvement in the early stages of research development as possible.
CRN: Children has had a substantial amount of success in engaging with children and young people. The formation of the Young Persons’ Advisory Group, topic specific focus groups, and engaging with young people in schools, has enabled young people to become more involved in the research process by giving them the confidence, information and opportunities to be able to contribute at all levels. An exciting initiative to expand our work with young people is working with Sir Iain Chalmers, Coordinator of the James Lind Initiative, in the development of a young persons’ website that will sit within Testing Treatments interactive (www.testingtreatments.org). The purpose is to improve young people’s understanding of the reasons for doing fair tests of treatments, what fair tests look like, and how they and everyone else has some role to play in promoting better research for better health care. Members of the Young Persons’ Advisory Group have been integral in developing and having editorial responsibility for one or more modules within the website, which will be launched in April 2015.
For further information about the group or to find out how to access the group to support your study please contact Jennifer.preston@liverpool.ac.uk or follow the links via www.crn.nihr.ac.uk/children/pcpie/young-persons-advisory-group/
By Valerie Dunn
I am a researcher working on young people’s mental health at the University of Cambridge, Department of Psychiatry. I work as part of the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England, which brings together researchers and service providers to carry out applied health research to improve services.
My work focuses on mental health of young people leaving local authority care. Initially our consultations with young people about the research were informative for us but not engaging for young people. We needed to find a more innovative way to involve and interest young people in our work.
When we started our next project, devising a mental health training course for foster carers, it was essential to include the authentic experiences and opinions of young people. We decided to try film-making – about which we knew nothing!
My first step was to contact the Cambridgeshire Film Consortium, a not-for-profit film education organisation. Trish Shiel, the manager, was very keen and engaged the professionals, hired the equipment and studios and provided the cinema for the premiere screening.
We made our first animated short film, My Name is Joe, in 2012. The project was hugely enjoyable for everybody, adults and young people learned from each other and worked as a team. The film had immediate impact. As a result, the young people suggested topics for two more films, effectively setting the research agenda themselves. In 2013 we made Finding My Way, about leaving care, and last year we made Our House, about living in children’s homes.
For each film we held initial taster sessions where we visited Just Us groups, youth groups in the region for young people in care. The aim was to describe the project, enthuse young people and attract volunteers by experimenting with recording equipment, meeting the team and watching a selection of animated film snippets to illustrate the endless possibilities of the medium.
Overall 24 young people, aged 12–23, from foster care, residential homes, semi-independent and independent living, took part in the project. A core group of three were involved throughout the three years and became a central part of the team.
Most of the work took place during four-day animation summer schools in Cambridge. Through creative workshops, games and discussions young people worked closely together to explore the issues and think about what they wanted to say. Then learned a range of film, animation and sound techniques and brought their ideas to life. These workshops gave young people the time, space and skills to explore sensitive issues safely and creatively.
Although one of the main aims of the project was to produce relevant, high quality films, the production process was equally, if not more, important: we wanted the young people to learn, to work together, to feel safe, to explore ways of expressing themselves and to be fully engaged and excited.
The young people felt the creative workshop approach was vital to the success of the films in helping them to really think about what the important issues were: “It’s a must to get the ideas bouncing around, it’s not boring like just sitting talking.”
Michelle Dean, who runs activities and groups for young people in care in Cambridgeshire, pointed out that our creative and enjoyable approach was very inclusive and attracted young people who were often reluctant to join in routine activities. This is an important consideration for research too as it is always a challenge to involve so-called hard-to-reach groups.
Since taking part in the project one young person has completed a British Film Institute (BFI) Academy short film course and was singled out for special mention by the expert panel after the course. She plans to study special effects at university: “It [the project] gave me a little bit of hope in a way that I can do something with my life … Before, I thought I wasn’t good enough and now I think I can achieve something in life. It was a confidence boost and it’s helped in many ways.” Another young person is working towards music college with continued mentoring from a member of the team.
The young people won a BFI documentary award in 2014 and were finalists in the national Children and Young People Now Awards in November 2014. The films have reached a wide and diverse audience with 10,000+ views on YouTube. They are used all over the UK to train foster carers and social workers.
This very loosely-structured method relies on establishing close, trusting relationships where adults and young people work closely together. It’s democratic and the outputs can be uncertain. As a researcher it can be a challenge to remain objective. The work has been hugely enjoyable, moving and memorable. I have a deeper understanding of the issues facing young people in care and why they deserve an enormous amount of respect.
We plan other creative projects with young people in care, depressed teenagers and young people using mental health services.
You can see the films along with short Behind the Scenes films which show the teams at work:
My Name is Joe www.youtube.com/watch?v=ArBjWe3IWs0
My Name is Joe: Behind the Scenes www.youtube.com/watch?v=o17AHhi_fus
Finding My Way www.youtube.com/watch?v=L1qZggHoFmM
Finding my Way: Behind the Scenes www.youtube.com/watch?v=pgPu_iHZvL4
Our House www.youtube.com/watch?v=fs-RVgsFfcA
Our partners are Cambridgeshire County Council Young People’s Participation Service and Youth Offending Service, Spellbound Animation, Cambridgeshire Film Consortium, Sonic Sound Studios and Andy Dunn (film maker).
Contact: Valerie Dunn, Research Associate, University of Cambridge / NIHR CLAHRC East of England
Email: vjd20@cam.ac.uk
Tel: 01223 746053
Abstract: We will present a poster on the importance of and barriers to involving young people in mental health research. We will highlight the strategies we have used to overcome these barriers.
We will explore how young people’s views may differ from adults and how they can bring different perspectives as well as the particular importance of patient and public involvement (PPI) in mental health research.
Abstract:
Background: Smartphone technology is an innovative way of assisting people to self-manage their mental health condition. The free smartphone app called “Blue Ice” is designed to enable young people, who self-harm, to utilise techniques they have learnt in clinical therapy and help prevent further episodes of self-harm.
Methods: After consultation with a local young people’s charity, the free smartphone app “Blue Ice” was created with features suggested by the user group, such as a diary function, feedback mechanism to chart progress and ways to summon help in an emergency. This app lets users record their mood and feelings, and utilise ‘mood lifter’ activities. Phones and training were provided.
Results: V1 is now available for android. It is currently being tested by five young people who are being treated for self-harming and clinical depression in Oxford Mental Health Trust with a view to creating V2 based on their feedback.
Conclusions: Smartphone apps for mental health issues can be developed with the input of users. Hard to reach communities can be involved in shaping the features and design of new behaviour changing technology.
Abstract:
Introduction: A paediatric clinical study comparing vitamin D (oily solution) dosed daily for 8 weeks (0.3-0.5mL = 6,000-10,000 Units) compared to a single large dose was proposed (7.5- 12.5mL = 150,000-250,000 Units). Specific issues identified as potential hurdles within this study were the need for two additional blood samples and the compliance with the therapy, particularly for daily dosing.
Methods: Focus groups were held with young people; these included research-naïve young people (n=30) as well as an experienced National Institute for Health Research (NIHR) young persons’ group (n=10). Specific topics for discussion within these focus groups included:
Results: The requirement for two additional blood tests was not seen as a major barrier to participation in the study, however the children and young people suggested that these tests should be offered at convenient times and locations to maximise recruitment, for example at local GPs, walk-in centres or at their home. Children and young people reported that they are likely to forget to take a medicine daily, particularly when they are feeling well. They also raised concerns over the use of a large volume of oil for the single high dose.
Conclusions: The study team are reviewing their protocol to incorporate the views of young people, specifically regarding collection of additional blood samples and by inclusion of age-appropriate tools (eg sticker charts or test reminders) to aid in compliance for the daily dosing arm.