The social care needs of people affected by cancer: a qualitative study in Lincolnshire

Abstract

Background People affected by cancer (PABC) can have a range of social care needs at different stages of the patient pathway. These may include emotional, practical, personal, as well as information and financial needs. The UK charity, Macmillan Cancer Support want to refocus their current social care provision and, (where need is evidenced) develop new services to better address the social care needs of PABC in Lincolnshire. In order to do this effectively Macmillan together with the Bromhead Medical Charity has commissioned the University of Lincoln to undertake this research, with a view to developing a thorough understanding of the needs of PABC in Lincolnshire to ensure that service developments are acceptable, appropriate and accessible, and in line with the specific requirements of the local population. Aim (1)To examine the social care needs of PABC in Lincolnshire (2)To provide recommendations regarding future service development and delivery. Methods A qualitative study utilising in-depth interviews (n=10). Interviews were analysed using the Framework method of qualitative data analysis (Ritchie and Spencer, 1994). Results All reported the need for emotional support (in particular around the initial diagnosis and surrounding period). This was fulfilled by friends, family, support groups and Macmillan health professionals. The need for practical and personal care support varied amongst those we interviewed with this often being dependent on the type and frequency of treatment. For most, family and friends shouldered the burden of this as opposed to social services. Some participants relied on personal income to pay for treatment and fund additional costs associated with their illness. Furthermore, expenses were also attributed to friends and family of the patient. In addition we received reports of negative experiences when dealing with the Department of Work and Pensions (DWP) and claiming for Employment Support Allowance (ESA). Information and advice was important throughout the cancer journey; the preferred format (physical or online) was influenced by personal preference. For some, they felt well informed whilst others would have liked more information. Conclusion In line with national research (Macmillan, 2015), this study shows similarities in that respondents reported a range of supportive care needs in relation to emotional, practical and personal, financial and information support. Our study offers an in-depth analysis of the social care needs of PABC in a local setting. The small sample and failure to recruit across all stages of the cancer journey would limit the extent to which the findings could be extrapolated to the wider population. At the same time, it is hoped that the recommendations offer valuable insight into areas that could further be developed to meet the needs of PABC throughout the count