Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer.

Journal article


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
AuthorsMartins, A, Taylor, RM, Morgan, S and Fern, LA
Abstract

OBJECTIVES: To identify and describe the outcomes and facilitating processes of participation at 'Find Your Sense of Tumour' (FYSOT), a 2-day residential programme/conference for young people with cancer, from the perspective of professionals attending and patient representatives. DESIGN: Case study. SETTING: Observation of the 'Find Your Sense of Tumour' over 18s residential programme and face-to-face interviews in hospital and phone interviews. PARTICIPANTS: Twenty-six participants - 19 professionals from hospitals across the UK who accompanied young people to FYSOT; 3 programme organisers; and 4 young people from the programme steering committee. METHODS: Participant observation and semistructured interviews. RESULTS: This process evaluation of an educational, social and peer-to-peer support residential weekend for young people with cancer identified key outcomes for young people - positive attitudes (increased sociability, confidence), belonging (feeling accepted, understood), recreation (trying new activities, having fun) and increased knowledge (balance between educational talks and interactions with other young people); and three overarching facilitating processes - being with other young people, the professionals accompanying young people to the event for support and guidance, and the conference/intentional programming. Being in a safe, relaxed and fun environment with other young people facilitates the development of peer support networks and increases young people's confidence and knowledge. Although the focus of the residential programme is on young people, interviewees acknowledge the impact of attending on professionals' motivation, learning and changes in practice. CONCLUSIONS: This study has extended our understanding of the role of residential programmes by identifying outcomes and facilitating mechanisms. We have shown that residential programmes have an important role in providing participants with social, emotional and informational support, as well as play an important role in redefining normality. Longitudinal quantitative and qualitative research is needed to optimise outcomes and design and implement quality programmes that support young people's development.

KeywordsHumans; Neoplasms; Program Evaluation; Health Knowledge, Attitudes, Practice; Qualitative Research; Social Support; Adolescent; Adult; Female; Male; Interviews as Topic; Young Adult; United Kingdom; peer-to-peer support; process evaluation; residential programme; young people with cancer; Adolescent; Adult; Female; Health Knowledge, Attitudes, Practice; Humans; Interviews as Topic; Male; Neoplasms; Program Evaluation; Qualitative Research; Social Support; United Kingdom; Young Adult
Year2017
JournalBMJ Open
Journal citation7 (7)
PublisherBMJ Publishing Group
ISSN2044-6055
Digital Object Identifier (DOI)https://doi.org/10.1136/bmjopen-2016-015309
Publication dates
Print13 Jul 2017
Publication process dates
Deposited23 May 2018
Accepted09 May 2017
Accepted author manuscript
License
File Access Level
Open
Permalink -

https://openresearch.lsbu.ac.uk/item/86y99

Download files


Accepted author manuscript
  • 56
    total views
  • 107
    total downloads
  • 3
    views this month
  • 2
    downloads this month

Export as

Related outputs

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