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

Journal article


Kenten, C, Martins, A, Fern, LA, Gibson, F, Lea, S, Ngwenya, N, Whelan, JS and Taylor, RM (2017). Qualitative study to understand the barriers to recruiting young people with cancer to BRIGHTLIGHT: a national cohort study in England. BMJ Open. 7 (11). https://doi.org/10.1136/bmjopen-2017-018291
AuthorsKenten, C, Martins, A, Fern, LA, Gibson, F, Lea, S, Ngwenya, N, Whelan, JS and Taylor, RM
Abstract

OBJECTIVES: BRIGHTLIGHT is a national evaluation of cancer services for teenagers and young adults in England. Following challenges with recruitment, our aim was to understand more fully healthcare professionals' perspectives of the challenges of recruiting young people to a low-risk observational study, and to provide guidance for future recruitment processes. DESIGN: Qualitative. SETTING: National Health Service (NHS) hospitals in England. METHODS: Semistructured telephone interviews with a convenience sample of 23 healthcare professionals. Participants included principal investigators/other staff recruiting into the BRIGHTLIGHT study. Data were analysed using framework analysis. RESULTS: The emergent themes were linked to levels of research organisational management, described using the levels of social network analysis: micro-level (the individual; in this case the target population to be recruited-young people with cancer); meso-level (the organisation; refers to place of recruitment and people responsible for recruitment); and macro-level (the large-scale or global structure; refers to the wider research function of the NHS and associated policies). Study-related issues occurred across all three levels, which were influenced by the context of the study. At the meso-level, professionals' perceptions of young people and communication between professionals generated age/cancer type silos, resulting in recruitment of either children or adults, but not both by the same team, and only in the cancer type the recruiting professional was aligned to. At the macro-level the main barrier was discordant configuration of a research service with a clinical service. CONCLUSIONS: This study has identified significant barriers to recruitment mainly at the meso-level and macro-level, which are more challenging for research teams to influence. We suggest that interconnected whole-system changes are required to facilitate the success of interventions designed to improve recruitment. Interventions targeted at study design/management and the micro-level only may be less successful. We offer solutions to be considered by those involved at all levels of research for this population.

KeywordsHumans; Neoplasms; Data Collection; Qualitative Research; Patient Selection; Adolescent; State Medicine; England; Female; Male; Interviews as Topic; Young Adult; Observational Studies as Topic; brightlight; cancer; recruitment; research; teenager; young adult; Adolescent; Data Collection; England; Female; Humans; Interviews as Topic; Male; Neoplasms; Observational Studies as Topic; Patient Selection; Qualitative Research; State Medicine; Young Adult
Year2017
JournalBMJ Open
Journal citation7 (11)
ISSN2044-6055
Digital Object Identifier (DOI)https://doi.org/10.1136/bmjopen-2017-018291
Publication dates
Print08 Nov 2017
Publication process dates
Deposited18 Oct 2018
Accepted13 Oct 2017
Publisher's version
License
File Access Level
Open
Permalink -

https://openresearch.lsbu.ac.uk/item/86wz9

  • 88
    total views
  • 236
    total downloads
  • 0
    views this month
  • 2
    downloads this month

Export as

Related outputs

Measurement properties of instruments to assess pain in children and adolescents with cancer: A systematic review protocol
Loeffen, EAH, Stinson, JN, Birnie, KA, Van Dijk, M, Kulkarni, K, Rijsdijk, M, Font-Gonzalez, A, Dupuis, LL, Van Dalen, EC, Mulder, RL, Campbell, F, Tissing, WJE, Van De Wetering, MD and Gibson, F (2019). Measurement properties of instruments to assess pain in children and adolescents with cancer: A systematic review protocol. Systematic Reviews. 8 (1), p. 33. https://doi.org/10.1186/s13643-019-0945-4
Understanding care when cure is not likely for young adults who face cancer: A realist analysis of data from patients, families and healthcare professionals
Kenten, C, Ngwenya, N, Gibson, F, Flatley, M, Jones, L, Pearce, S, Wong, G, Black, KM, Haig, S, Hough, R, Hurlow, A, Stirling, LC, Taylor, RM, Tookman, A and Whelan, J (2019). 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. 9 (1), p. e024397. https://doi.org/10.1136/bmjopen-2018-024397
Description of the BRIGHTLIGHT cohort: The evaluation of teenage and young adult cancer services in England
Taylor, RM, Fern, LA, Barber, J, Alvarez-Galvez, J, Feltbower, R, Morris, S, Hooker, L, McCabe, MG, Gibson, F, Raine, R, Stark, DP and Whelan, JS (2019). Description of the BRIGHTLIGHT cohort: The evaluation of teenage and young adult cancer services in England. BMJ Open. 9 (4), p. e027797. https://doi.org/10.1136/bmjopen-2018-027797
Reducing pain in children with cancer: Methodology for the development of a clinical practice guideline
Loeffen, EAH, Kremer, LCM, van de Wetering, MD, Mulder, RL, Font-Gonzalez, A, Dupuis, LL, Campbell, F, Tissing, WJE, Anghelescu, DL, Birnie, K, de Bont, J, Bredlau, AL, Cullen, P, Daniels, S, Dick, B, van Dijk, M, Dingeman, RS, Evan, E, Gegg, J, Gibson, F, van Grotel, M, Jibb, L, Kao, R, Knops, R, Kulkarni, K, Leroy, P, Liossi, C, Ljungman, G, McLean, J, Mensink, M, Michiels, E, Muckaden, MA, Newman, B, Positano, K, Rijsdijk, M, Rowe, E, Sangha, G, Stinson, J, Taddio, A, Taylor, H, Tutelman, P, Twycross, A, Wijnen, M and Zeltzer, L (2019). Reducing pain in children with cancer: Methodology for the development of a clinical practice guideline. Pediatric Blood and Cancer. 66 (6), p. e27698. https://doi.org/10.1002/pbc.27698
Learning disability nurse provision in children's hospitals: Hospital staff perceptions of whether it makes a difference
Oulton, K, Wray, J, Hassiotis, A, Kenten, C, Russell, J, Tuffrey-Wijne, I, Whiting, M and Gibson, F (2019). Learning disability nurse provision in children's hospitals: Hospital staff perceptions of whether it makes a difference. BMC Pediatrics. 19 (192). https://doi.org/10.1186/s12887-019-1547-y
"LEARN"ing what is important to children and young people with intellectual disabilities when they are in hospital
Oulton, K, Sell, D and Gibson, F (2018). "LEARN"ing what is important to children and young people with intellectual disabilities when they are in hospital. Journal of Applied Research in Intellectual Disabilities. 31, pp. 792-803. https://doi.org/10.1111/jar.12433
Diagnostic timeliness in adolescents and young adults with cancer: a cross-sectional analysis of the BRIGHTLIGHT cohort
Herbert, A, Lyratzopoulos, G, Whelan, J, Taylor, RM, Barber, J, Gibson, F and Fern, LA (2018). Diagnostic timeliness in adolescents and young adults with cancer: a cross-sectional analysis of the BRIGHTLIGHT cohort. The Lancet Child & Adolescent Health. 2 (3), pp. 180-190. https://doi.org/10.1016/S2352-4642(18)30004-X
Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.
Oulton, K, Gibson, F, Carr, L, Hassiotis, A, Jewitt, C, Kenten, C, Russell, J, Whiting, M, Tuffrey-Wijne, I and Wray, J (2018). Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. BMC Health Services Research. 18 (1), p. 203. https://doi.org/10.1186/s12913-018-2970-8
Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: Insights from 10 years of user involvement
Taylor, RM, Whelan, JS, Gibson, F, Morgan, S and Fern, LA (2018). Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: Insights from 10 years of user involvement. Research Involvement and Engagement. 4 (1). https://doi.org/10.1186/s40900-018-0135-x
Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT
Taylor, RM, Mohain, J, Gibson, F, Solanki, A, Whelan, J and Fern, LA (2015). Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT. BMC Medical Research Methodology. 15 (20). https://doi.org/10.1186/s12874-015-0014-1
Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer.
Martins, A, Taylor, RM, Morgan, S and Fern, LA (2017). Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer. BMJ Open. 7 (7). https://doi.org/10.1136/bmjopen-2016-015309
Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed.
Spathis, A, Hatcher, H, Booth, S, Gibson, F, Stone, P, Abbas, L, Barclay, M, Brimicombe, J, Thiemann, P, McCabe, MG, Campsey, R, Hooker, L, Moss, W, Robson, J and Barclay, S (2017). Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed. Journal of Adolescent and Young Adult Oncology. 6 (3), pp. 489-493. https://doi.org/10.1089/jayao.2017.0037
Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer.
Taylor, RM, Feltbower, RG, Aslam, N, Raine, R, Whelan, J and Gibson, F (2016). Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer. BMJ Open. 6 (5). https://doi.org/10.1136/bmjopen-2016-011361
"We sometimes hold on to ours" - Professionals' views on factors that both delay and facilitate transition to adult care
Aldiss, S, Cass, H, Ellis, J and Gibson, F (2016). "We sometimes hold on to ours" - Professionals' views on factors that both delay and facilitate transition to adult care. Frontiers in Pediatrics. 4, p. 125. https://doi.org/10.3389/fped.2016.00125
A prospective observational study of machine translation software to overcome the challenge of including ethnic diversity in healthcare research
Taylor, RM, Crichton, N, Moult, B and Gibson, F (2015). A prospective observational study of machine translation software to overcome the challenge of including ethnic diversity in healthcare research. Nursing Open. 2 (1), pp. 14-23. https://doi.org/10.1002/nop2.13
Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer
Taylor, RM, Fern, LA, Solanki, A, Hooker, L, Carluccio, A, Pye, J, Jeans, D, Frere-Smith, T, Gibson, F, Barber, J, Raine, R, Stark, D, Feltbower, R, Pearce, S and Whelan, J (2015). Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer. Health and Quality of Life Outcomes. 13 (1). https://doi.org/10.1186/s12955-015-0312-7