Professor Nick Hulbert-Williams from Edge Hill University’s Department of Psychology, along with Dr Brooke Swash from University of Chester and 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.
Professor Hulbert-Williams, who will be giving his inaugural professorial lecture at Edge Hill on Thursday 20 April, 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 while 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.”
1 in 8 adults in the UK are informal carers, with two thirds over the age of 65. This age group accounts for 60 per cent of UK cancer diagnoses and the North West has high proportions of carers compared to the national average.
Being diagnosed with cancer while 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.
Professor Hulbert-Williams’s inaugural professorial lecture at Edge Hill University on Thursday 20 April, entitled The psychology of living with and beyond cancer – From theory to the real world, is open to members of the public as well as professionals working in the area of cancer care.
Find more information and book here.
April 19, 2023