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Introduction

Cancer represents a substantial burden on individuals, society and the economy. Traditionally an approach to cancer patients focused on accurate diagnosis and treatment interventions aimed to maximize survival. Elsewhere in this book we describe the move towards patient-centred care, which includes recognition of the need to measure and prioritize the psychological aspects of the patient's experience and to put in place effective supportive measures. In this chapter we review progress towards identifying and measuring the social difficulties of cancer patients and indicate the available measures to address these.

The social impact of cancer

The social impact of cancer may be considerable not only at the time of diagnosis, when immediate readjustments may have to be made, but also possibly over many years following diagnosis. Some cancer 'survivors' will be disease-free following their treatment, but others may attend hospital for monitoring, for multiple treatment cycles for chronic cancer1 or for palliative interventions.2 Side and late effects of treatment are not uncommon, which may result in chronic disability and restrictions in carrying out daily activities. Patients at all stages of disease report problems in all domains of life.3

  • In the home (e.g. domestic chores, personal care, caring responsibilities).

  • With services (e.g. support services, aids and adaptations).

  • With finances (e.g. welfare benefits, mortgages/pensions), and regarding employment.

  • Legally (e.g. sorting out family affairs, wills).

  • With relationships (e.g. communication problems, new relationships).

  • Concerning sexuality and body image, as well as recreationally (e.g. social and leisure activities, holidays).

  • With housing and getting around.

In addition to the direct impact of cancer and cancer treatment on everyday living, there are indirect 'knock-on' effects. For example, a patient may experience financial difficulties as a result of cancer and its treatment (e.g. loss of income or increased daily living costs), leading to detrimental impacts on family life, roles and relationships.4 A qualitative study found that patients and carers reported being unprepared for the financial impact following a cancer diagnosis, delaying taking action to address financial problems, which in some cases led to significant long-term problems such as debt or house repossession.4 The impact of cancer on employment and family economics can be profound.5,6 Timmons et al.6 stated: 'This study reveals the complex, multidimensional nature of the financial and economic burden cancer imposes on patients and the whole family unit. Changes in income after cancer exacerbate the effects of cancer-related out-of-pocket expenses. These findings have implications for healthcare professionals, service providers and policy makers.'

Who is at risk?

Although most patients are resilient and cope with the impact of cancer and its treatment on their lives, a significant minority struggle. In a population-based survey of more than 17,000 colorectal cancer patients,7 15% of participants reported levels of social distress (measured using the 21-item Social Difficulties Inventory [SDI-21]) which if found in clinical ...

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