COPIC-STC
Research type
Research Study
Full title
Coproducing an intervention for carers who care for a relative undergoing SACT and/or Radiotherapy treatment for solid tumour cancer.
IRAS ID
263684
Contact name
Luke Midgley
Contact email
Sponsor organisation
Velindre NHS Trust
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
In 2015, 359,734 cases of cancer were diagnosed in the UK (1) with a projected rise to 4 million by 2020. This means that one in two people (47%) will get cancer at some point in their lives (2). Despite, the number of cases of cancer diagnosis increasing, improvement has been made with a high percentage of cancer survival in the UK, which has doubled in the last 40 years (3). We have seen an increase in outpatient care in the community over this period which has increased from 11 million to 15.3 million (4), therefore, there is now a greater reliance on informal carers in the community. Informal carers have limited knowledge, skills and resources to meet the needs of their relatives who have cancer (5). Informal carers play a key role in supporting patients undergoing SACT and/or Radiotherapy treatment for solid tumour cancers. A cancer diagnosis often requires multiple treatment visits to an oncology center such as Velindre. This can present challenges for carers, as they coordinate and manage the health system and professionals and their relative (6). This process can be particularly challenging and can affect the physical, psychological and social well-being of carers, as well as economic burden (7, 8). \n\nRationale: \nFinding and accessing support for carers’ own needs can be difficult (9) and furthermore, these unmet needs can have a secondary impact on the wellbeing of the relative of which they are caring for (10). Few studies have explored the unmet needs of carers in oncology and their preferences for delivery of support (11, 12, and 13). Therefore, this scoping project will seek to understand these unmet needs and co-produce an intervention that is acceptable to carers to meet these unmet needs. \n\n1-\t(https://www.wcrf-uk.org/uk/preventing-cancer/cancer-preventability-statistics)\n2-\t Macmillan Cancer Support (2013). Cancer mortality trends: 1992–2020. Estimated based on prevalence, incidence and mortality \n3-\t(https://www.cancerresearchuk.org/health-professional/cancer-statistics/survival)\n4-\thttps://www.kingsfund.org.uk/publications/hospital-activity-funding-changes\n5-\tConnolly, J., & Milligan, S. D. (2014). Knowledge and skills needed by informal carers to look after terminally ill patients at home. End Of Life Journal, 4.\n6-\tAoun, S., Kristjanson, L., & Oldham, L. (2006). The challenges and unmet needs of people with neurodegenerative conditions and their carers. Journal for community Nurses, 11(1), 17.\n7-\tPhilp, I., McKee, K. J., Meldrum, P., Ballinger, B. R., Gilhooly, M. L. M., Gordon, D. S., ... & Whittick, J. E. (1995). Community care for demented and non-demented elderly people: a comparison study of financial burden, service use, and unmet needs in family supporters. BMJ, 310(6993), 1503-1506.\n8-\tPark, S. M., Kim, Y. J., Kim, S., Choi, J. S., Lim, H. Y., Choi, Y. S., ... & Jeong, H. S. (2010). Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance. Supportive Care in Cancer, 18(6), 699-706.\n9-\tBrodaty, H., & Green, A. (2002). Who cares for the carer? The often forgotten patient. Australian family physician, 31(9), 833.\n10-\tJanda, M., Steginga, S., Dunn, J., Langbecker, D., Walker, D., & Eakin, E. (2008). Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient education and counseling, 71(2), 251-258.\n11-\tButow, P. N., Kirsten, L. T., Ussher, J. M., Wain, G. V., Sandoval, M., Hobbs, K. M., ... & Stenlake, A. (2007). What is the ideal support group? Views of Australian people with cancer and their carers. Psycho‐Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer, 16(11), 1039-1045.\n12-\tHarrop, E., Byrne, A., & Nelson, A. (2014). “It’s alright to ask for help”: findings from a qualitative study exploring the information and support needs of family carers at the end of life. BMC palliative care, 13(1), 22.\n13-\tAoun, S., Deas, K., Toye, C., Ewing, G., Grande, G., & Stajduhar, K. (2015). Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial. Palliative medicine, 29(6), 508-517.\n\n\n
REC name
North of Scotland Research Ethics Committee 1
REC reference
20/NS/0068
Date of REC Opinion
29 May 2020
REC opinion
Favourable Opinion