Resources

Since the early feasibility work the team have proudly published information about BRIGHTLIGHT to inform researchers and those take part in the studies of the work and emerging findings. 

This section of our website is designed to help you find the resources and research you are looking for by order of year. If you would like copies of any publications please download using the link, or contact us if it is not available on the website.

Here we also share with you the outputs of our affiliated studies and research collaborations.

2015

Resources

Journal Publications

Novel participatory methods of involving patients in research: naming and branding a longitudinal study, BRIGHTLIGHT

BMC Medical Research Methodology

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Perspectives: A newly-qualified nurse’s experience of starting a clinical academic career

Journal of Research in Nursing

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Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer

Health and Quality of Life Outcomes

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Conference Presentations

 ‘Okay to ask’: young people’s views about access to and participation in research

Inaugural International Adolescent and Young Adult Oncology Congress, Sydney, Australia, 3rd December

Professional competence for working with teenagers and young adults with cancer – consensus and dissension revealed in BRIGHTLIGHT 

International Society of Paediatric Oncology, South Africa, 8th-11th October

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Defining healthcare professional competence for working with teenagers and young adults with cancer – a BRIGHTLIGHT study

Royal College of Paediatrics and Child Health Annual Conference, Birmingham, 28th -30th April

Poster Presentations

The challenges and reality of patient and public involvement with teenagers and young adults

RCN International Research Society Conference, Nottingham, 10th-11th March

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Starting out on a clinical-academic pathway: the experience of a newly-qualified nurse

Royal College of Paediatrics and Child Health Conference, Birmingham, 28th -30th April 

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Other Outputs

Newsletter- Young Person

Autumn

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Newsletter: Healthcare Professionals

Issue 3: Spring

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Newsletter: Young People

Issue 3: Summer 

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2016

Resources

Journal Publications

A participatory study of teenagers and young adults’ views on access and participation in cancer research.

European Journal of Oncology

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Direct access to potential research participants for a cohort study using a confidentiality waiver included in UK National Health Service legal statutes.

British Medical Journal

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Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?

Cancer Nursing

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Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer

British Medical Journal

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Psychosocial interventions for adolescents and young adults diagnosed with cancer during adolescence: a critical review

Journal of Adolescent and Young Adult Oncology

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Conference Presentations

“Hospice Scares the Life Out of Me”: Breaking Down Barriers to Communication with Young Adults with Terminal Cancer

21st International Congress on Palliative Care, Montreal, Canada

The BRIGHTLIGHT STUDY; Using patient reports and treatment data to evaluate the effectiveness of AYA services in the UK

UICC World Cancer Congress, Paris, France, 4th November 

‘It was like having a big sleepover with our chemo bags on’: exploring the relationship between physical and social hospital environments

1st Global AYA Cancer Congress, Edinburgh

 

Poster Presentations

“You are not alone” – process evaluation of a residential conference for young people with cancer

NCRI Annual Conference, Liverpool, 7th-9th November

What are the barriers to recruiting young people with cancer to research?

1st Global AYA Cancer Congress, Edinburgh

Young People with Cancer Peer-To-Peer Support Intervention: Process Evaluation of a Two Day Residential Conference

International Society of Paediatric Oncology SIOP Congress, Dublin, Ireland

Other Outputs

Newsletter: Young People

Summer

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2017

Resources

Journal Publications

Qualitative study to understand the barriers to recruiting young people with cancer to BRIGHTLIGHT: a national cohort study in England.

BMJ Open

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Meeting the Digital Technology Needs of Teenagers and Young Adults (TYA) with Cancer: a cross-sectional survey.

Journal  of Cancer Survivorship

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Experiences and preferences for end of life care for young adults with cancer and their informal carers: a narrative synthesis

Journal of Adolescent and Young Adult Oncology

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Optimising a strategy with young people to retain young people in a longitudinal cohort study: BRIGHTLIGHT

Journal of Adolescent and Young Adult Oncology

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Being normal, not vulnerable – process evaluation of a two-day conference for teenagers and young people with cancer.

BMJ Open

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Improving the identification of cancer in young people: A scoping review.

Expert Review of Quality of Life in Cancer Care

 

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Multi-Professional Perspectives on Adolescent and Young Adult Oncology Across Europe: An e-Delphi Survey.
Journal of Adolescent and Young Adult Oncology

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Conference Presentations

BRIGHTLIGHT: AYA programmes adding value (Invited speakers)

2nd Global AYA Cancer Congress, Atlanta, USA, 5th – 7th December

What is BRIGHTLIGHT?

NCRI Annual Conference, Liverpool, 5th-8th November 

 

The challenges and successes of conducting a complex national longitudinal cohort study of young people with cancer.

BRIGHTLIGHT-TYAC Conference, Leeds, July 6th & 7th

Mapping the landscape… views of professionals from the BRIGHTLIGHT international Delphi survey and beyond

BRIGHTLIGHT-TYAC Conference, Leeds, July 6th & 7th

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The development of BRIGHTLIGHT: study background, design and operation

BRIGHTLIGHT-TYAC Conference, Leeds, July 6th & 7th

 

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Participatory research: using board games to guide secondary analysis of big data

RCN International Research Society Conference, Oxford, 6th April

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Poster Presentations

Do residential weekends for young people with cancer add value? Interim analysis of a two day residential weekend in the United Kingdom, Find Your Sense of Tumour

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

‘Does Patient and Public Involvement (PPI) with young people add value?’ Ten years of PPI, the BRIGHTLIGHT experience

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

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Decision making and actions driving online information and support seeking for young people with cancer

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

Conceptualising age-appropriate care for teenagers and young adults with cancer

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

Lets play Twister™! Novel methods to facilitate understanding of complex research methods and generate secondary research hypotheses with young people

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

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Do residential weekends for young people with cancer add value? Perceptions of carers/significant others

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

Information and support needs of carers: Do specialist cancer services for adolescents and young adults add value?

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

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A qualitative study to understand the barriers to recruiting adolescents and young adults with cancer to BRIGHTLIGHT, a national cohort study

The 2nd Global Adolescent and Young Adult Cancer Congress, Atlanta, GA, USA, December 5th-7th

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Four poster presentations:

Understanding the barriers to recruitment of teenagers and young adults with cancer to research

Carers of teenagers and young adults with cancer have unmet information and support needs

The complex process of young people with cancer using online information and support

Carer perspectives of the value of specialist residential weekends for young people with cancer

National Cancer Research Institute Conference, Liverpool, November 6-8th

Exploring the experiences of patients undergoing treatment and surviving with bone cancer

Bone Cancer Research Trust Conference, Birmingham, 22nd July

A national collaboration to develop a sarcoma-specific patient reported outcome measure

British Sarcoma Group Conference, 1st-2nd March

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Other Outputs

REPORT

Online information and support needs for young people with cancer. London: University College London Hospitals NHS Foundation Trust

(Not yet publicly available: a journal publication of these findings is currently under review)

NEWSLETTER

Newsletter – November 2017

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NEWSLETTER: HEALTHCARE PROFESSIONALS

March 2017

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2018

Resources

Journal Publications

Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: reflections on 10 years of user involvement

Research Involvement and Engagement

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Online information and support needs of young people with cancer: A participatory action research study

Adolescent Health, Medicine and Therapeutics

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Conceptualising age-appropriate care for teenagers and young adults with cancer: a qualitative mixed methods study

Adolescent Medicine Health and Therapeutics

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Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature

European Journal of Cancer Care

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Transitioning Adolescent and Young Adult cancer care research out of its adolescence (Editorial)

European Journal of Cancer Care

 

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Enhancing accrual to clinical trials of adolescents and young adults with cancer (invited review)

Pediatric Blood and Cancer

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Evaluation of Patient-Reported Outcome Protocol Content and Reporting in UK Cancer Clinical Trials: The EPiC study qualitative protocol.

BMJ Open

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Diagnostic timeliness in teenagers and young adults with cancer: Cross-sectional findings from the BRIGHTLIGHT Cohort

Lancet Child and Adolescent Health

 

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Sex, body image and relationships: a BRIGHTLIGHT workshop on information and support needs of adolescents and young adults.

Journal of Adolescent and Young Adult Oncology 

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Conference Presentations

Challenges in developing sarcoma-specific tools (workshop).

British Sarcoma Group, Birmingham, 27th February

“No Peppa Pig!”: Conceptualising age-appropriate care for teenagers and young adults with cancer

RCN International Research Society Conference, Birmingham, 16-18th April

SAM – Sarcoma Assessment Measure Phase 1: Patient experience

Bone Cancer Research Trust Conference, Birmingham, 23rd June

There is a Light: BRIGHTLIGHT – working with young people to create impactful dissemination

TYAC Annual Conference, Birmingham, September 11th-12th 

The support needs of young people at the end of active cancer treatment

3rd Global AYA Cancer Congress, Sydney, Australia 4-6th December

Healthcare professional perceptions of online information and support for young people with cancer in the United Kingdom

3rd Global AYA Cancer Congress, Sydney, Australia 4-6th December

Measuring quality of life in young people with cancer (invited presentation)

TYAC Annual Conference, Birmingham, 11-12th September

The challenge of measuring teenage and young adult experience of cancer in a longitudinal survey

(symposium presentation)

RCN International Research Society Conference, Birmingham, 16-18th April

 

Sustained improvements in self-esteem, emotional functioning, social functioning and body image one year after attending the residential weekend ‘Find Your Sense of Tumour’

3rd Global AYA Cancer Congress, Sydney, Australia, 4-6th December

Working on “Quality of Life (QoL)” for sarcoma patients: Development of SAM (Sarcoma Assessment Measure)

8th SPAEN Annual Conference, Milan, Italy, February 2nd-4th

Quality of Life and PROMs Plenary: SAM – a Sarcoma specific QOL tool (Plenary session)

Challenges in developing sarcoma-specific tools (Workshop)

British Sarcoma Group, Birmingham, February 27th

Exploring patient experiences of being diagnosed, treated and living with sarcoma – Phase 1 in developing a sarcoma-specific patient-reported outcome measure.

British Psychosocial Oncology Society Conference, Southampton, March 8-9th

A national collaboration to develop a sarcoma-specific patient report outcome measure: Phase 1 – Exploring patient experiences.

British Sarcoma Group Annual Conference, Birmingham, February 27th

Poster Presentations

Presenting cancer symptoms and diagnostic timeliness among teenagers and young adults: findings from the BRIGHTLIGHT cohort

3rd Global AYA Cancer Congress, Sydney, Australia 4-6th December

‘Does that mean that cancer patients can’t have sex?’ – Adolescent and young adults’ support and information preferences

3rd Global AYA Cancer Congress, Sydney, Australia, 4-6th December

“I just hate my face. It’s so different, and because it doesn’t work properly”

– experiences of patients with head and neck sarcoma

UK Oncology Nursing Society (UKONS) Annual Conference, Glasgow, 16-18th November

(Won best poster award)

Experiences of patients with bone cancer: the role of illness and development trajectories, healthcare professionals, social support and coping strategies

The Connective Tissue Oncology Society (CTOS), Rome, 14-17th November

“Why do we need SAM”? A narrative review of the impact of sarcoma on psychosocial wellbeing.

British Sarcoma Group Annual Conference, Birmingham, February 27th

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A national survey of carers of teenagers and young adults with cancer unmet information and support needs.

British Psychosocial Oncology Society Conference, Southampton, March 8-9th

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The value of clinical supervision role in qualitative research practice – case study analysis.

British Psychosocial Oncology Society Conference, Southampton, March 8-9th

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Phase 1 in developing a sarcoma-specific patient-reported outcome measure in the UK: exploring patient’s experiences

European Musculo-Skeletal Oncology Society (ESMOS) meeting, Amsterdam, 8-11th May

Advancing practice using patient-reported outcome measures: A national collaboration to develop SAM

RCN International Research Society Conference, Birmingham, 16-18th April

Other Outputs

No Documents Found

2019

Resources

Journal Publications

A critical review of the impact of sarcoma on psychosocial wellbeing

Sarcoma

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Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England

BMJ Open

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A qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer

BMJ Open 

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How do healthcare professionals perceive online information and support for young people with cancer in the United Kingdom (UK)?

Adolescent Health, Medicine and Therapeutics

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The culture of young people’s cancer care: A narrative review and synthesis of the UK literature

European Journal of Cancer Care

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Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

BMJ Open

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Conference Presentations

A qualitative exploration of the experiences of teenagers and young adults with sarcoma

British Sarcoma Group (BSG) Annual Conference, London, 27th-28th February

Measuring what matters: developing the content of the Sarcoma Assessment Measure (SAM)

British Sarcoma Group (BSG) Annual Conference, London, 27th-28th February

“The Clinical Nurse Specialist was really a stable point for me to go to for any sort of information or support” – the role of professionals’ expertise and support in patients’ experience

British Sarcoma Group (BSG) Annual Conference, London, 27th-28th February

Interactive workshop with the delegates of the NSF to identify the clinical utility of SAM

British Sarcoma Group (BSG) Annual Conference, London, 27th-28th February

SAM: capturing experience to measure outcome (invited speaker)

British Psychosocial Oncology Society, Chester, 1st March

Development of the content of the Sarcoma Assessment Measure (SAM)

PROMS Annual UK Research Conference, Leeds, 13th June

The Five ‘Es’ of Holistic Care for Adolescents and Young Adults with Cancer

Qualitative Health Research Network Conference, London, 21-22nd March 2019

Working with young people to creatively disseminate a national PROMS study – developing ‘There is a Light: BRIGHTLIGHT’

PROMS Annual UK Research Conference, Leeds, 13th June

(won the award for Innovation in PPI)

Poster Presentations

‘My identity had just been completely devastated’ – experiences of adolescent and young adults with sarcoma

Qualitative Health Research Network Conference, London, 21-22nd March

How do healthcare professional perceive online information and support for young people with cancer in the United Kingdom (UK)?

Qualitative Health Research Network Conference, London, 21-22nd March

Other Outputs

Infographic presenting an overview of the findings of the ‘Delphi survey’:

Delphi Study Infographic

2020

Resources

Journal Publications

No Documents Found

Conference Presentations

No Documents Found

Poster Presentations

No Documents Found

Other Outputs

No Documents Found

 
©2020 This website presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209-10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
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