The working ages (25-65 years) are a period when most people have significant work, financial and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study aimed to summarise research describing the impacts that facing an expected premature death has on employment, financial and lifestyle of working age people and their families.
A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.
Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n=18) were focused on cancer. All studies identified adverse effects on workforce participation, finances and lifestyle. Many patients were forced to work less or give up work/retire early due to symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with childcare, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, while having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, while maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with non-malignant diseases.
Working age people facing an expected premature death and their families have significant unmet financial, employment and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with different non-malignant conditions is required in order to better understand their unique needs.