Introduction

0.1 General

Worldwide, 349 million people are estimated to be care-dependent and of these, 101 million people are over the age of 60 years^[¹^]. The form that long-term care takes varies significantly among and within countries, from home care services to institutional hospital-based care. In most countries, individuals assume caregiving responsibilities for a spouse, family member, or friend who needs care because of limitations in their physical, mental or cognitive functioning and the majority of these carers are women. Although caregiving is a valued societal resource and often viewed positively by carers themselves, family/friend carers are largely a hidden and unacknowledged workforce.

Caregiving has become one of the most important social and economic issues worldwide and as population ages, carers will play an increasing critical role in every society, providing substantial economic value globally. For example, a study in Finland showed that the availability of unpaid care considerably reduces public care expenditure (estimated cost savings of 338 million euros)^[²^]. As unpaid care reduces costs of health system expenditure, it needs to be recognized that both unpaid and paid care is more often done by women. This can result in women leaving paid work to meet the demands of their unpaid care work and/or experiencing workplace inequalities. Caregiving is impacting workforces, health care systems, families and societies in general.

One of the greatest challenges for working carers is trying to balance employment with caregiving responsibilities. For example, labour force participation (the percentage of working age people in an economy who are either employed or unemployed but actively looking for work) is significantly affected by the family care needs of the growing ageing population. At the same time, family sizes are decreasing, more women are employed in the labour force, mobility is increasing, life expectancy is increasing, and the number of older adults in need of care is projected to continue to grow. These trends are impacting the growing number of working carers. Studies^[³^][⁴^][⁵^][⁶^] show that their paid work is negatively impacted by becoming a carer and in most situations, employers do not have policies or programs in place to support these working carers^[⁷^].

0.2 Supports for working carers

Employers can play a key role in supporting their employees who are also carers. Organizations can opt to sponsor benefits to working carers, such as education, skills training or supportive services, or to implement carer-supportive personnel policies and programs. These policies and programs help working carers to manage their paid work alongside their caring role, providing equal opportunities for them to remain in/or return to work, and help to reduce work-family conflict and/or support work-life balance. However, there is a lack of clear guidance for employers on how to support working carers.

The workplace is but one arena where working carers can be supported. Although the majority of waking hours are often spent at work, making it a key environment for carer supports, there are other arenas where carer supports are available. These include those available through the government or state, via the provision of public health care services and supports, such as family leaves. There are also a range of non-governmental, charitable and/or disease-specific organizations (i.e. cancer, dementia) that also provide supports, whether transportation services or personal care, for example. Finally, each working carer also has their own informal support system made up of extended family, friends and/or neighbours.

In some jurisdictions, working carers can be entitled to statutory care leaves, income support or credits, insurance schemes, financial support for care expenses, etc. For example, in June 2019, the European Union updated its Work-Life Balance Directive to introduce carer leaves and extended the right to request flexible working arrangements to working carers (previously available to working parents)^[⁸^].

The intent of this document is to complement relevant existing programs and supports, whether state provided or otherwise.

0.3 Benefits of implementing a carer-inclusive program

Studies have shown that carer-inclusive policies and programs can help to:

— retain skilled staff;
— improve worker morale and productivity;
— reduce absenteeism and presenteeism;
— avoid the number of staff coming to work sick;
— reduce disability costs and mental health claims;
— give organizations a competitive advantage;
— build a more engaged workforce;
— support the organization’s efforts for a more inclusive workforce;
— demonstrate the organization’s investment in society through their support of working carers.

0.4 Application of document and relevant publications

This document can be selectively applied by organizations, recognizing that resources and supports available will differ from organization to organization depending on the size and sector of the organization and the jurisdiction. The development of a carer-inclusive program is seen as a process that requires flexibility in terms of implementation.

A carer-inclusive program can be as basic as recognizing working carers as recipients that would benefit from existing supports. For example, many organizations have existing employee support programs which can be used to support working carers. A carer-inclusive program can build on these existing supports or be a stand-alone program, if these are not available. Strategies need to include raising awareness of these supports and targeting them appropriately.

Achieving a carer-inclusive workplace requires a holistic approach and depends on the engagement of many stakeholders and integration of systems. For example, programs to address equity, diversity and inclusion, human resources management and health and safety management would be relevant to the application of this document. As such, there are related documents that can be used in conjunction with this document, e.g. ISO 30415, ISO TR 30406, ISO 45001 and ISO 45003.

0.5 Caregiving and sex/gender issues

A sex/gender lens is important to consider in developing carer-inclusive policies and practices. For example, estimates from across different countries indicate that 57 % to 81 % of all carers of older adults and others requiring long term care are females, and are likely to work outside the home^[⁹^].

For female carers the impact that caregiving can have on employment can be considerable given that they provide significantly more caregiving hours than males. Recent European research shows that only 50 % of female working carers can work full-time and specifies that caregiving impacts their financial circumstances^[¹⁰^][¹¹^]. In addition, when compared to males, female working carers are more likely to make job adjustments (change or leave jobs) as a result of their ongoing caregiving demands^[¹¹^]. In addition, female carers provide more emotional support to care recipients, which can have a greater impact on a carer’s mental health and contribute to carer distress.

A sex/gender lens is key to establishing carer-inclusive policies and programs to help eliminate bias and to promote sex and gender equality. This will help to ensure that the needs of all are given equal consideration in organizational decisions and activities.

This document provides guidance to organizations on how to apply a sex/gender lens to the development of carer-inclusive programs. It supports the aims of United Nations Declaration on Gender Responsive Standards and Standards Development to make standards more gender responsive^[¹²^]. It also contributes to the achievement of the United Nations Sustainable Development Goal (SDG) 5: Achieve gender equality and empower all women and girls and specifically SDG Target 5.4: Recognize and value unpaid care and domestic work through the provision of public services, infrastructure and social protection policies and the promotion of shared responsibility within the household and the family as nationally appropriate. Further this document contributes to SDG 8: Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all, and specifically Target 8: To achieve full and productive employment and decent work for all women and men, including for young people and persons with disabilities, and for equal pay for work of equal value^[¹³^][¹⁴^]. Additional guidance on sex, gender and caregiving is provided in Annex A.

0.6 Emerging and evolving issues for working carers

The COVID-19 pandemic has highlighted and increased risks for many working carers. Although providing certain advantages for working carers, such as working from home, COVID-19 has shown more clearly the gaps in supports for working carers in both social and health care systems. A UK survey showed that 70 % of family carers are providing more care due to the pandemic and many working carers have seen a dramatic reduction in their income due to lockdown policies^[¹⁵^].

While not a new situation, one group particularly at risk are the “double duty” carers. Many of the frontline health care workers providing care to older adults are also providing unpaid care to their own older family members, friends or neighbours. These workers are at increased risk of contracting the virus, making it is difficult for them to carry out their family caring role.

Another critical group of working carers are the “sandwich carers”. These are people trying to look after frail and disabled elderly relatives, often their parents, or other older family or friends at the same time as looking after dependent children. During the pandemic, these working carers are often working from home, doing home schooling, parenting, and caring for their older relatives, friends or neighbours.

While this document focuses on working adults, there is increasing concern about the issues facing young carers who can also be students and workers. Some academic organizations and employers are beginning to address this issue, but at present, there is little guidance in this area.

Phrases and words related to caregiving have developed differently in individual languages and language communities, depending on the professional, social, economic, political, cultural, and linguistic factors. In addition, these words and phrases have evolved over recent decades with changes in health care systems and public views about the role of caregiving in an ageing society. Some phrases traditionally used in this field can now be viewed as misleading or inappropriate^[¹⁶^]. In the development of this document, feedback from experts showed great variation in the use of these phrases in different countries and contexts.

The Technical Committee has developed an informative guide on terminology related to caregiving to show how these words and phrases are used across regions and disciplines and how they are evolving over time. See: Terminology Related to Caregiving, available on the TC 314 website at: https://committee.iso.org/sites/tc314/home/projects/published/resources.html^[¹⁷^].

This document can assist organizations in identifying and responding to these issues for working carers.

In this document, the following verbal forms are used:

— “shall” indicates a requirement;
— “should” indicates a recommendation;
— “can” indicates a possibility or a capability;
— “may” indicates a permission.

Information marked as “NOTE” is intended to assist the understanding or use of the document. “Notes to entry” used in Clause 3 provide additional information that supplements the terminological data and can contain requirements relating to the use of a term.

BS ISO 25551:2021

Ageing societies. General requirements and guidelines for carer-inclusive organizations

Current

Published:

30 Nov 2021