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Taylor RM, Fern LA, Barber J, et al. Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme. Southampton (UK): NIHR Journals Library; 2021 Nov. (Programme Grants for Applied Research, No. 9.12.)

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Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme.

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Appendix 1Example of the structure of a patient and public involvement workshop

B RIGHTLIGHT

User involvement workshop 5 – Hypotheses Generating

Friday 18 September 2015

Venue:

Time 11–4pm (must be finished at 4pm)

Objective of workshop

  1. To generate hypotheses to underpin secondary analysis from YP perspective.
  2. Generate ideas about the content of the website.
  3. Generate new ideas for social media use, newsletter content, retention card content.

Outputs

  1. Output from hypotheses generating task/ideas for secondary analysis.
  2. Journal article/editorial on young person’s input into secondary analysis, hypotheses generating.
  3. Photos of the day.

ATTENDEES

BRIGHTLIGHT: Lorna Fern, Rachel Taylor, Anita Solanki, Sarah Lea, Ana Martins.

Delegates: 9 young people (collect demographic and consent forms).

FORMAT OF DAY

Set up projector or TV to play loop of videos and photos of previous workshops.

Attendees arrive and settle 10.30–11.00 in the café/canteen area

Welcome (11.00–11.15).

Rules: Lorna to do.

Anonymity.

Confidentiality.

Recording, photos and videos.

Fire alarms, toilets.

Down time.

Activity 1: ice breaker activity (11.15–11.45)

Using pipe cleaners ask young people to create object representing how they felt on their journey to workshop/current, followed by introductions of themselves starting with older members first, e.g. how long they’ve been involved, what kind of activities they have participated in.

Activity 2: presentation (11.45–12.00)

Introduce BRIGHTLIGHTs main aims (for those who have not attended before).

Update YAP on BRIGHTLIGHT progress made since last workshop.

Introduce objectives and purpose of the day followed by a programme of the day’s activities.

Ensure young people have a clear understanding of their purpose of the task/day.

Activity 3: website/social media/newsletter exercise (12.00–13.00)

New website look

AS to lead: Show new web.

Ask to think if they like, remind them of their ideas from last time – are these represented on new website?

Load existing page to show new members of how the page currently appears. Ways to improve the general look of page.

Break for lunch 13.00–13.45

13.45–14.00 Lorna will explain secondary analysis and hypotheses generating.

Activity 4: BRIGHTLIGHT Twister (14.00–15.45)

Introduce task using examples with the help of the team to demonstrate the Twister game.

SL Set up Dictaphone to record discussion.

BRIGHTLIGHT twister game (see separate instructions).

This will be reported on flip charts by RT.

LF: oversee.

RT: list combinations from spinner board.

Facilitators: AS/AM/SL (may not all be required so go upstairs for coffee).

Feedback and group discussion

Ask YP to regroup and discuss collectively the combinations from the Twister game.

Facilitator prompts.

Questions to ask/think about:

  1. Why are the two related?
  2. Can anyone give examples using their own experience?

Using the final list young people will be given three dots and asked to individually choose the three they think are the most important. This list will be presented to young people, who will be invited to work with the BRIGHTLIGHT team on the analysis and write up of these data.

Goodbyes 15.45–16.00.

If there’s time before lunch or at the end of the day

Newsletter

Content ideas.

What’s missing?

How often?

Post workshop meeting.

Facebook

Questions to ask/think about:

  1. What kind of updates about the study do you want to know?
  2. How frequently should we upload study information?
  3. What else would you like to see on the Facebook page?

Young people can compare to other Facebook groups they are part of to suggest ways of improving BRIGHTLIGHT.

Copyright © 2021 Taylor et al. This work was produced by Taylor et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.
Bookshelf ID: NBK575101

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