Untold stories in clinical research: the carer’s tale

When asked, the National Institute for Health Research (NIHR) will tell you that 630,000 people took part in a clinical study last year.

I wonder, however, whether that number should be raised to nearer one million*. For alongside many participants during their journey in research, walks a mother, father, brother, sister or significant other. One of the six million carers that save the country many billions of pounds each year by caring for a loved one.

I began my career in an organisation (the Alzheimer’s Disease Society now the Alzheimer’s Society) that was founded by carers and driven by their priorities and concerns. That was until earlier diagnosis, advances in medicine and societal change brought the rights of the person with dementia to the fore.

Rightfully so.

I was part of a lobby group called Disability Daily that was part of the movement which forced Government to pass the Disability Discrimination Act and set down in legislation the rights of people with disabilities in employment, accessibility and to self-determination in other aspects of life.

Rightfully so.

But carers have not stopped caring and their needs have not lessened because of these developments . In fact you could say they are greater than ever before as services become more stretched and disjointed and less person-centred. When I review the new fangled apps and self-management tools that researchers love to put in front of us these days, it strikes me that there is a great unspoken behind them all. It is that, however wonderful these things are, the onus for support is being shifted more and more to the household, the family, the immediate relationships a patient has. If they are lucky to have these of course. Are we really ready for care-behind-closed-doors as opposed to care in the community?

As an aside I implore you to support this year’s National Carers Week and it’s Carers Quest in June (9-15th) for this very reason. To ensure carers are recognised in and by their communities.

For the carer of someone taking part in research there are many anxieties and issues to consider. There are some very practical ones: getting your loved one to a many more hospital appointments and waiting, waiting, waiting; having to take more time off work or patchwork childcare around a new timetable; being your partner’s memory to ensure they do the tests or take the treatment and the right time and in the right way.  Carer costs are rarely taken into account when thinking about the cost-effectiveness of trials for instance.

Emotionally, there is much to contend with too. Worries over the added stress for your loved one of trying the untried. Concern that your partner is making the right decisions in their interest and not doing it to please others. Suffering each side-effect anticipated or not and it’s associated disruption to the rhythm of the caring day you that have perfected for so long. Remaining motivated for you and them. False hope. Being apart. Being lonely.

We do not talk enough about carers and the impact on carers of a person taking part in clinical research.

When we do my observation is that the conversation focuses on some predictable areas:
– the consent process and particularly consent issues when the research participants has mental capacity issues
– the tensions between parent and child and their respective agendas when the latter is the research participant
– the fact that not all care-giver relationships are kind and caring ones with the potential for serious abuse

All this is true. But only a few of the fragments of the research story as told by carers surely?

When I listen to patients and their carers talk about their experiences in research, so much more seems to emerge about their relationship which is rich and potentially useful for how we design research in the future. How much more could we do to take care of carers when the going gets rough on a trial and ensure people stay the course? Perhaps we ought to have an information and consent sheet for carers as well that captures their concerns? Can they be important brokers of the idea of taking part in the first instance?

That’s certainly how I felt this afternoon after the public involvement session at the Eastern Region Celebrating Clinical Research Nurses conference in Newmarket. The rather brilliant panel of adults and children (Beth and Evan) spoke insightfully and constructively about many things. From the quality of information and the issues that extended family can have over a trial and how to manage this, to seizing back control from a system and the way medicine can work was a strong theme. The patient’s story and the carer’s story were not always different, but the accent and tone was. How we reflect this is the challenge?

The literature on carers of people in research seems poor, an unexplored area of inquiry? If I find any, I will post it. Most of what I have found looks at the motivations for patients and carers for going into a trial.

So it is good news that the Local Clinical Research Networks (LCRNs) have put ‘carer’ into the title of their work on public involvement. It is now called Patient, Carer and Public Involvement and Engagement. Or something like that.

But they are going to have to get their acts together. I want it to be more than just in their title. Surveys will only go so far. We need more carers to be involved in how we design and deliver research. They have as much right to be on panels or speak at conferences as patients themselves. Carer issues, concerns and experience must be part of the story they tell across NIHR.  They are also very much a gateway to participation for many as the Stroke Research Network has shown during its lifetime.

We are waiting.

Carers might actually make the difference between us achieving a million patients in research or not?

Here are some quick links and ideas of further information that my good colleagues at INVOLVE sent to me after I had posted the above.

If you have any projects looking at carers’ issues in research, you might want to submit something for this year’s INVOLVE conference on 26/7 November.   

Dementia and mental health seem to be the main conditions where there has been discussion about the role of carer involvement in research,  This looks interesting on the Mental Health Research Network (MHRN).   You might also want to check out what Norah Fry has done in the past with carers of people with learning difficulties






*not an official goal

One thought on “Untold stories in clinical research: the carer’s tale

  1. Pingback: Hopscotch on the Prom…a short story dedicated to all Alzheimer’s sufferers and their carers or care givers « Let me tell U a story

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