Disseminating study results to LD participants

by Nathalie Jones

Involve 2012 list the dissemination of research findings as an important stage in involving people in the research process. Disseminating research findings has traditionally included publishing research papers in academic journals and presenting at conferences.

However, adults with intellectual disabilities and their families and carers, are unlikely to be able or know how to access these modes of communication.

2 “Thank You” events were run by researchers from the WELLDO study in September 2016 to share the study results directly with the adult participants and their supporting people and to thank them for their time in the study.  The event took the following format:

  • 15 minute talk.  This was interactive and discussed the results of the study at a level suited to the audience.
  • Stalls / goodie bags / printed information.  Stalls contained information from both interventions and allowed people to have information from the other “arm” of the study.  Goodie bags contained easy read information detailing the study results, a contact flyer detailing who to contact at the university should someone wise to take part in future studies and left over “freebies” from the study.  People were then invited to fill their bags with other resources at the stalls.
  • Evaluation of the event.  The evaluation was three fold – a “writing on the wall” activity where people were invited to write, draw or tell a carer / researcher their opinions of the day; a “ball in a box” activity where people added a ball to a “liked” and “did not like” box; and evaluation form which participants and their carers were encouraged to complete.
  • Complimentary lunch.  In the day centre venue, the university paid the centre to use their existing catering team that was run by adults with LD from the centre.  For the church hall venue, “tesco easy entertaining” was used and delivered food on the day.

Planning dissemination events for the LD community:

Time

The event lasted one hour between 11.30am and 12.30pm over the lunch time period.  An hour each side was spent setting up and clearing away.

Venue

2 venues were used, one in a day centre and the other in a church hall.  The locations were based around recruitment areas but still remained inconvenient for many people who lived further away. There were pros and cons to both of these venues.  Attendance to each was similar (7 at the day centre and 6 at the church hall).  The day centre venue had the advantage that most people knew each-other and were familiar with the venue.  However the managers were keen that only familiar people attended and that numbers were kept manageable.  Food was on site and it was good to be able to be able to support a local LD community business. Space was limited to smaller rooms.  The church hall was more spacious, the stalls more visable and the event seemed to run more smoothly for those reasons.  Layout could be how we wished but significantly more administration time was needed, liaising with the venue and organising catering.

Cost

The cost of resources (not including staff time) for the two events including food was £330

Administration

This included, sending out invitations and monitoring replies, 2 telephone reminders, designing the talk and associated resources, liaising with the venues, ordering and organising the resources, planning the catering, managing the IT.

Time spent by main organiser of the events – 37 hours

Help on the day – 3 other professional spending 3 hours each – total of 9 hours hands on time

Invitation sending / collating of replies – estimated 2 hours

People needed

At each event 4 members of staff were needed on the day.  Roles were – manning the stalls / delivering the talk / general running; taking photos; obtaining consent for photos and evaluating the event.

Evaluation

The evaluations were positive with people having enjoyed the event.  Comments included it being nice to meet others on the programme, finding out the results and seeing the researchers again.

Further reading:

Involve, National Institute for Health Research: Briefing notes for researchers:  public involvement in NHS, public health and social care research, February 2012