Professor Nick Hulbert-Williams from Edge Hill University’s Department of Psychology, along with Dr Brooke Swash from University of Chester, Professor Valerie Morrison at Bangor University are leading the project, with Lorraine Wright from Edge Hill University appointed as the PhD student supporting.
Together the team have set out to understand the lived experiences of informal caregivers after receiving a cancer diagnosis, with the aim to produce a toolkit to aid cancer care professionals in their patient support.
1 in 8 adults in the UK are informal carers, with two thirds over the age of 65. This age group accounts for 60% of UK cancer diagnoses and the North West has high proportions of carers compared to the national average. Being diagnosed with cancer whilst undertaking this role brings additional challenges to the caregiver. This research aims to better understand the care and support that is provided to people with cancer who have caregiving responsibilities, as well as the physical and psychological impact on the person they are caring for.
The first step of the project included a systematic literature review to understand what is already known about the experiences of informal caregivers, who are themselves unwell, and highlight any gaps in knowledge. Findings so far confirm that little research has been carried out on this topic, with limited evidence showing an impact not only on the caregiving role but also the psychological wellbeing and quality of life of the caregiver.
The team are now underway with a series of interviews and discussion groups, exploring the experiences of the caregiver with cancer, the person they are caring for and healthcare professionals involved in the delivery of cancer care.
Following this they will develop a toolkit to help cancer care professionals better support their patients with caregiving responsibilities. The toolkit will be developed with involvement from patients, carers and health professionals and the team will seek feedback from those with cancer, informal care recipients, healthcare professionals and people working within cancer charities.
Prof Hulbert-Williams said: “The North West and North Wales have high prevalence of cancers with poorer prognosis and high treatment burden. Informal caregiving has increased faster than population growth across England, including in the North West, which has one of the highest percentages of local population providing informal care in England.
“This project will provide novel insights into the experiences and the challenges faced trying to navigate cancer recovery whilst maintaining caregiving responsibilities. It will help us to understand the impact of cancer diagnosis in someone with caregiving responsibilities and what support they need, and ultimately enable us to develop the right tools to help.”
North West Cancer Research is the region’s leading cancer charity, funding life-saving research and education to tackle the cause, improve the care and find the cure for cancer.
The charity is dedicated to putting the region’s cancer needs first through focussing on the types of cancer that affect people living across North West England and North Wales the most.
If you're an informal caregiver (or have received care from someone) who has had a cancer diagnosis in the last two years, your experience could help support future informal caregivers who receive a cancer diagnosis. For more information about the North West Cancer Research - funded study, or to get involved please email Lorraine Wright ([email protected])