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.

2013

Resources

Journal Publications

Teenage and young adult experiences of cancer care in England- the BRIGHTLIGHT study

Cancer Nursing

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Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis.

International Journal of Nursing Studies

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Conference Presentations

A multi-faceted approach to collaboration: The BRIGHTLIGHT Experience.

Centre for Nursing and Midwifery: Research in Clinical Practice Conference, London

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BRIGHTLIGHT: Emerging results

Teenagers and Young Adults with cancer -Winter Education Day Conference, Leeds

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Poster Presentations

The 7th ‘D’: Don’t decide for me.

TYAC Winter Education Day, Leeds

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Other Outputs

Newsletter: Healthcare Professionals

Issue 1: Autumn 2013

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Newsletter: Young People

Issue 1: Autumn 2013

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2014

Resources

Journal Publications

No Documents Found

Conference Presentations

Sanyya, M and Beale, Z on behalf of the YAP. BRIGHTLIGHT – Find Your Sense of Tumour Centre Parc

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Teenagers, Young Adults and Access to Research: perspective from policy, participants and researchers

RCN International Research Society Conference, Glasgow, Scotland

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Poster Presentations

Empowering young people to participate in research: young people’s views about research access and participation.

NCIN Conference, Birmingham

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Other Outputs

The BRIGHTLIGHT Directory of Care

Mapping teenage and young adult cancer services in England. Final Report

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Delphi Study Protocol

Version 2.1, February 

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Companion Study Policy

Version 1.5, July 

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Newsletter: Healthcare Professionals

Issue 2: Winter 2014

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Newsletter: Young People

Issue 1: Summer 2014

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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

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

International Society of Paediatric Oncology, South Africa

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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 Conference, Birmingham

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Poster Presentations

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

RCN International Research Society Conference, Nottingham

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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

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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

‘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

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

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

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

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

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

“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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Other Outputs

No Documents Found

 
©2018 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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