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Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: A systematic review

Published online by Cambridge University Press:  21 December 2017

Slavica Kochovska ,
Tim Luckett ,
Meera Agar  and
Jane L. Phillips
Slavica Kochovska
Affiliation:
IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia
Tim Luckett
Affiliation:
IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia
Meera Agar
Affiliation:
IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia
Jane L. Phillips*
Affiliation:
IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia
*
Address correspondence and reprint requests to Jane L. Phillips, Professor of Nursing (Palliative Care), Director, IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia. E-mail: jane.phillips@uts.edu.au.
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Abstract

Objective:

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 set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.

Method:

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.

Results:

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 because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas 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 nonmalignant disease.

Significance of results:

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 nonmalignant conditions is required to better understand their unique needs.

Keywords

Palliative careEnd of lifeEmploymentFinancial concernsFamily
Type
Review Article
Information
Palliative & Supportive Care , Volume 16 , Issue 3 , June 2018 , pp. 347 - 364
Copyright
Copyright © Cambridge University Press 2017 

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