Meet the carer

In building our experiences, the creative team speak to not only patients but frequently work with carers, leading to a different angle, and deeper insights.

Paul Gascoigne (Creative Director) shares how understanding insights from carers can help us even better understand the story of living with a chronic condition.

When creating A Life in a Day experiences to help enhance understanding of what it’s like to live with a chronic health condition, in addition to how symptoms and side-effects might physically impact a people’ lives, we also explore the social and emotional impacts of living with the condition.

One aspect that has been consistently important in telling the story of how a chronic illness affects lives, is the experience of the carer.

As people, we do not live with a disease or condition in isolation. We live with it in the presence of others. Our friends, our families, our children, and our partners.

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Being diagnosed and living with a life-changing condition is obviously physically and emotionally challenging for the patient, but it can be just as challenging for those who find themselves – often very suddenly – having to adopt the role of their carer.

Through their lived experience, carers become experts in many of the issues, impacts and barriers associated with a condition. Such as coordinating multiple medical appointments in complex healthcare systems, managing a potentially reduced household income, and often becoming an advocate for the patient should the condition become debilitating.

However, if there’s one thing that has become evident from the many interviews we have conducted with carers during the development of our programmes, it is that they often feel unconsidered and unheard. As this parent of an infant infected with RSV illustrates:   

After our daughter was transferred into PICU, there was no doubt the doctors were doing their best for her, but with me and my husband they’d be just, like, cold. It’s like this condescending way they talk to you. Like you’re dumb and don’t understand anything. But when you’re already beating yourself up because your baby is lying there on a ventilator, it just makes you feel gross. Although people are not as smart and haven’t been through medical school, I do think sometimes parents know certain things that can help. We know our kid’s history and what they’re usually like. We should be allowed to have a voice.

Giving carers a voice and helping participants understand the impact treatments have on them is why we include their stories in A life in Day experiences. To share in their thoughts and often complex feelings about how a condition might impact them, as well as the person they care for.

They talk of loneliness, depression, guilt, resentment, juggling conflicting demands, relationship changes. And they talk of hope, of the relief of an improved prognosis and of the importance of being heard, as the partner of someone living with obesity explains:

His living in denial about his condition is destroying my life. We do get on, we’ve got a good bond, and I love him. But it’s got to the stage where even my stepdaughter – his daughter – says, ‘this can’t carry on, you’ve got to leave him’. Because she sees what it’s doing to me. And I said, ‘if I leave him, he’ll be dead’. I’ve had a lot of counselling, but it doesn’t work because the actual problem is outside of my control. I can control how I respond to it, but not how he deals with it. But if talking about it here can help others understand how obesity affects people like me and his children, maybe it can make a difference. I hope it helps.

Healthcare professionals will rightly focus on treating the patient, but it is possible that both treatment efficacy and the patient experience could be improved by empathising with the carer as well as the person they care for. 

If you would like to ‘meet’ the carer, please contact us at A Life in a Day. 

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