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.
Journal Publications
A participatory study of teenagers and young adults’ views on access and participation in cancer research.
European Journal of Oncology
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
Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?
Cancer Nursing
Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer
British Medical Journal
Psychosocial interventions for adolescents and young adults diagnosed with cancer during adolescence: a critical review
Journal of Adolescent and Young Adult Oncology
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
Summer
Journal Publications
Qualitative study to understand the barriers to recruiting young people with cancer to BRIGHTLIGHT: a national cohort study in England.
BMJ Open
Meeting the Digital Technology Needs of Teenagers and Young Adults (TYA) with Cancer: a cross-sectional survey.
Journal of Cancer Survivorship
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
Optimising a strategy with young people to retain young people in a longitudinal cohort study: BRIGHTLIGHT
Journal of Adolescent and Young Adult Oncology
Being normal, not vulnerable – process evaluation of a two-day conference for teenagers and young people with cancer.
BMJ Open
Improving the identification of cancer in young people: A scoping review.
Expert Review of Quality of Life in Cancer Care
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
The development of BRIGHTLIGHT: study background, design and operation
BRIGHTLIGHT-TYAC Conference, Leeds, July 6th & 7th
Participatory research: using board games to guide secondary analysis of big data
RCN International Research Society Conference, Oxford, 6th April
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
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
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
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
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
Martins A, Storey L, Wells M, Fern L, Bennister L, Gerrand C, Onasanya M, Woodford J, Windsor R, Whelan JS, Taylor RM ‘Identifying common experiences amongst sarcoma patients. The first phase in developing a sarcoma-specific patient-reported outcome measure’. NCRI Annual Conference, Liverpool November 2017.
Exploring the experiences of patients undergoing treatment and surviving with bone cancer
Bone Cancer Research Trust Conference, Birmingham, 22nd July
British Sarcoma Group Conference, 1st-2nd March
Other Outputs
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 – November 2017
March 2017
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
Online information and support needs of young people with cancer: A participatory action research study
Adolescent Health, Medicine and Therapeutics
Conceptualising age-appropriate care for teenagers and young adults with cancer: a qualitative mixed methods study
Adolescent Medicine Health and Therapeutics
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
Transitioning Adolescent and Young Adult cancer care research out of its adolescence (Editorial)
European Journal of Cancer Care
Enhancing accrual to clinical trials of adolescents and young adults with cancer (invited review)
Pediatric Blood and Cancer
Evaluation of Patient-Reported Outcome Protocol Content and Reporting in UK Cancer Clinical Trials: The EPiC study qualitative protocol.
BMJ Open
Diagnostic timeliness in teenagers and young adults with cancer: Cross-sectional findings from the BRIGHTLIGHT Cohort
Lancet Child and Adolescent Health
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
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
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
The value of clinical supervision role in qualitative research practice – case study analysis.
British Psychosocial Oncology Society Conference, Southampton, March 8-9th
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
Journal Publications
A critical review of the impact of sarcoma on psychosocial wellbeing
Sarcoma
Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England
BMJ Open
A qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer
BMJ Open
How do healthcare professionals perceive online information and support for young people with cancer in the United Kingdom (UK)?
Adolescent Health, Medicine and Therapeutics
The culture of young people’s cancer care: A narrative review and synthesis of the UK literature
European Journal of Cancer Care
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
Martins A, Alvarez-Galvez J, Fern LA, Vindrola C, Gibson F, Whelan JS, Taylor RM (2019) ‘The BRIGHTLIGHT national survey of the impact of specialist teenage and young adult cancer care on caregivers’ information and support needs’. Cancer Nursing DOI: 10.1097/NCC.0000000000000771
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’:
Journal Publications
Kosir U, Bowes L, Gerrand C, Windsor R, Onasanya M, Taylor RM, Martins A (2020) ‘Psychological adaptation and recovery in youth with sarcoma: A qualitative study with practical implications for clinical care and research’. BMJ Open.
Taylor RM, Fern LA, Barber JA, Alvarez-Galvez J, Feltbower R, Lea S, Martins A, Morris S, Hooker L, Gibson F, Raine R, Stark DP, Whelan JS (2020) ‘Specialist age-appropriate care and quality of life outcomes in a longitudinal cohort of teenagers and young adults: the BRIGHTLIGHT study’. BMJ Open e038471. doi:10.1136/bmjopen-2020-038471
Lea S, Martins A, Fern LA, Bassett M, Cable M, Doig G, Morgan S, Soanes L, Whelan M, Taylor RM (2020) ‘The support and information needs of young people with cancer when active treatment ends’. BMC Cancer doi: 10.1186/s12885-020-07197-2
Taylor RM. Lobel B, Thompson K, Onshila A, Croasdale M, Whelan JS, Fern LA (2020) ‘BRIGHTLIGHT researchers as ‘dramaturgs’: creating There is a Light from complex research data’. Research Involvement and Engagement doi: 10.1186/s40900-020-00222-5
Koo MM, Lyratzopoulos G, Abel GA, Taylor RM, Barber J, Gibson F, Whelan J, Fern LA (2020) ‘Self-reported presenting symptoms and timeliness of help-seeking among adolescents and young adults with cancer: cross-sectional analysis of the BRIGHTLIGHT cohort’. JAMA Open doi:10.1001/jamanetworkopen.2020.15437
Martins A, Whelan JS, Bennister L, Fern LA, Gerrand C, Onasanya M, Storey L, Wells M, Windsor R, Woodford J, Taylor RM (2020) ‘Developing the content of the Sarcoma Assessment Measure (SAM): using experience to measure outcome’. Quality of Life Research doi: 10.1007/s11136-020-02481-x
Lea S, Martins A, Bassett M, Cable M, Doig G, Fern LA, Morgan S, Smith S, Soanes L, Whelan M, Taylor RM (2020) ‘Exploring young people’s experience of ending active cancer treatment: When the “little cancer treatment bubble” pops’. Cancer Nursing doi: 10.1097/NCC.0000000000000798
Conference Presentations
No Documents Found
Poster Presentations
No Documents Found
Other Outputs
No Documents Found
Journal Publications
Lea S, Gibson F, Taylor RM ‘ ‘Holistic competence’: how is it developed and shared by nurses caring for adolescents and young adults with cancer?’ JAYAO. doi: 10.1089/jayao.2020.0120
Fern LA, Taylor RM, Barber JA, Alvarez-Galvez J, Feltbower R, Lea S, Martins A, Morris S, Hooker L, Gibson F, Raine R, Stark DP, Whelan JS ‘Processes of care and survival associated with treatment in specialist teenage and young adult cancer centres: results from the BRIGHTLIGHT cohort study’. BMJ Open.
Conference Presentations
Taylor RM ‘Top tips for developing an AYA research programme‘ (keynote lecture). AYA Survivorship Symposium: Caring for the Future. Princess Margaret Cancer Centre, Toronto Canada 8th April 2021 [virtual]
Taylor RM, Fern LA, Barber JA, Alvarez-Galvez J, Feltbower RG, Lea S, Martins A, Morris S, Hooker L, Gibson F, Raine R, Stark DP, Whelan JS ‘BRIGHTLIGHT: Do specialist services for teenagers and young adults with cancer add value?’ (oral). AYA Survivorship Symposium: Caring for the Future. Princess Margaret Cancer Centre, Toronto Canada 8th April 2021 [virtual]
Poster Presentations
Vindrola C, Taylor RM, Fern L, Whelan J, Gerrand C, Onasanya M, Storey L, Windsor R, Petrella A, Wells M, Woodford J. ‘ “Am I going to be told it’s come back?” Experiences of fear of recurrence in sarcoma patients‘. British Sarcoma Group Annual Meeting, 24-25 February 2021.
Taylor RM, Storey L, Windsor R, Petrella A, Onasanya M, Wells M, Vindrola C, Fern L, Gerrand C, Whelan J, Woodford J ‘Development of a sarcoma-specific fear of recurrence intervention: REASSURE_ME feasibility protocol‘. British Sarcoma Group Annual Meeting, 24-25 February 2021.
Other Outputs
No Documents Found
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