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Dr Jane Fossey used co-production with PPI contributors to produced a computerised Cognitive Behaviour Therapy (cCBT) package specifically for carers of people with dementia.

The research

The aim was to make a specifically tailored cCBT package that could be used in the NHS, as an alternative option to face-to-face therapy, which carers often find difficult to access.

Who

Jane recruited a range of stakeholders which included carers of people with dementia who had previously accessed psychological interventions in the NHS and carers from the Alzheimer’s Society Research in Dementia network who had no previous experience of CBT. She also recruited one carer who had been through a an on-line CBT programme which had been designed for people experiencing depression but not specifically created for carers of people with dementia.

What was done (and what worked!)

There were three phases:

  1. data gathering to produce a template package
  2. co-production of the package
  3. refinement phase through user testing.

The end result addressed the limitations of previous online interventions by including users and experts as consultants and collaborators throughout the project.

Timescales

This co-production of materials was a 15 month project that ended in July 2015. Since then the materials have been used in a randomised controlled trial which ends in December 2017.

The difference PPI made

PPI Contributors ensured that:

  • The package was trans-diagnostic, making it more suitable to the particular needs of carers of someone with dementia
  • The examples used in the package were anonymised and based on people’s real life experiences
  • Included things to keep people engaged with the materials – including personalisation and sensitisation of content to specific users
  • Was shorter than the usual hour which is too long for people with these caring responsibilities
  • Enabled people to bookmark their place and go back to it even within the 20 minute modules
  • Enabled users to select which order they wanted to do the modules in – focusing on their emotional needs by their own prioritization
  • Included a therapist ‘presence’ by audio or video commentary
  • Used their words to create the scenarios and to provide the emotions that would be covered (anxiety, depression, guilt, anger/resentment)
  • Was thoroughly tested by potential users
  • Used conversational language, audio narration and natural voice quality and script
  • Was clear to users with no complex text or graphics & text coming together confusingly
  • Used appropriate icons
  • Content was relevant to this group (understanding dementia, how people respond to stress, recognizing and coping with common emotions, stress management, relaxation, problem solving, identifying unhelpful thoughts & reactions, learning new skills, identifying lifestyle and support factors)

What was learnt?

Many health care interventions are developed by clinical experts after a brief consultation with a small number of consumers. This project sought to include users as key members of the ongoing project team in order to have relevant materials This project included a wide range of stakeholders including staff who provide CBT and those who support users of on-line therapy, not only PPI Contributors.

There may have been some bias in the selection of PPI Contributors as they were not randomly selected but were volunteers. We interviewed more women than men, which is representative of carers and reflected care of spouses and parents. However involvement of more carers with diverse experiences would have enhanced the development. It would have been preferable to interview more than one carer who had used other online CBT programmes, although this may reflect the limited access carers have had to a range of support

Working together also created opportunities to share learning and discuss experiences of services, which have had a broader application than this project alone.

What people said

“…very relevant.”

“I think it is interactive and very engaging.”

Conclusions and what next?

PPI was essential to creating the Caring for Me and You package. It is now being evaluated in a three-arm randomized controlled trial:

  1. Caring for Me and You as a stand-alone package
  2. Caring for Me and You plus telephone support
  3. Matched psycho-education control arm

Contact details

Jane Fossey

Further information:

Hales SA, Fossey J. Caring For Me and You: the co-production of a computerised cognitive behavioural therapy (cCBT) package for carers of people with dementia. Aging & mental health. 2017 Jul 1:1-8.

www.tandfonline.com/eprint/J6PrS4c9SCMUxPdaGhyx/full

Acknowledgement

This work was funded by Alzheimer’s Society grant 176