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Case study 2: Developing a support package for carers of patients undergoing chemotherapy

It is widely known that receiving chemotherapy, and coping with its effects, can be stressful and traumatic. But supporting someone through treatment can put carers at risk of mental and physical illness themselves. This case study shows how EBCD was used to develop a carers’ support package.

To many carers, supporting someone through their journey of cancer may feel distressing, daunting and exhausting. The evidence shows that many carers experience mental and physical health problems if their own needs are not addressed or if they feel ill-equipped to play this important role. Yet until now, most information and support resources have been aimed at patients themselves.

To help close this gap, in 2013 a research team at King’s College London decided to develop a package of resources to support carers. Working with Guy’s and St Thomas’s NHS Foundation Trust and funded by Dimbleby Cancer Care, they used experience-based co-design (EBCD) to develop and test an intervention in the form of a carer support package.

‘EBCD was the ideal approach for this type of project because of the co-design aspect,’ explains project researcher Vicki Tsianakas. ‘It wasn’t just about us going in as researchers and designing an intervention based on what we thought would be appropriate for carers: it was about involving carers and staff as equal partners.’ This was especially important, as where interventions are designed for carers, they are seldom implemented in practice.

The EBCD team filmed 20 carers talking about their experiences of supporting someone through chemotherapy. They described feelings of anxiety, helplessness and isolation and the need to constantly ‘put on a happy face’. They believed that while patients carried the disease, the carers carried the emotional burden.

‘The EBCD approach really enabled us to hear the carers’ voice. That was very powerful, as carers are often unheard,’ says Vicki. ‘Watching them come together in the co-design process, realising that they are not alone, and then having the opportunity to develop resources based on their own experiences: I think they felt empowered by this. In a sense, it legitimised their “carer” role.’

The project used all the standard elements of EBCD: filmed carer interviews, staff interviews, non-participation observation of the chemotherapy unit plus general observation of the unit and of scheduled consultations. But the approach moved away from traditional EBCD in one important way: at project planning stage, the team had already decided to they wanted to design a support package for carers that would include a DVD. This meant that the co-design aspect was focused on designing the components of the intervention – in other words, the contents of the DVD and other materials – rather than deciding on the intervention itself.

The resulting carer support package, entitled ‘Take care’, comprised a DVD, a leaflet and nurse-led group sessions. The package was evaluated through patient questionnaires before and after the intervention. The findings highlighted significant improvements in carer knowledge of chemotherapy, reduced need for information and support, and increased satisfaction and experience of care. It had limited impact on carers’ confidence in caring for patients and seemed not to impact on their emotional wellbeing.

‘Now we’ve seen such a positive effect on a lot of the outcomes, we can think about undertaking a larger trial – a multi-site randomised-controlled trial – to determine the effectiveness and cost-effectiveness of the intervention,’ explains Vicki. In the meantime, carers have benefitted from the package. One explained: ‘It has made me feel more confident because at least you know what to expect. It tells me that you will get through this. You feel reassured.’

Learning points

  • This study shows that EBCD can be used to develop an intervention that is not only acceptable to carers but also feasible to deliver in practice.
  • Try to allow time and resources for further co-design follow-up. In this project, only one follow-up co-design meeting took place to revise the package in its final phase. The team reflected that they would have liked to run additional meetings to further refine content and style.
  • The carers provided extremely positive feedback about the DVD that was produced, but it is not known whether they would have selected this medium at the outset if they were given the option.