ISO/FDIS 25551

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

Vieillissement de la population -- Exigences générales et lignes directrices pour les organisations favorisant et appuyant les aidants naturels

General Information

• Status: Published
• ICS: 03.080.30 - Services for consumers
• ICS: 11.020.10 - Health care services in general
• Technical Committee: ISO/TC 314 - Ageing societies
• Drafting Committee: ISO/TC 314/WG 3 - Carer inclusive
• Current Stage: 5020 - FDIS ballot initiated: 2 months. Proof sent to secretariat
• Start Date: 17-Aug-2021
• Completion Date: 17-Aug-2021

Standards Content (sample)

FINAL
INTERNATIONAL ISO/FDIS
DRAFT
STANDARD 25551
ISO/TC 314
Ageing societies — General
Secretariat: BSI
requirements and guidelines for
Voting begins on:
2021­08­17 carer-inclusive organizations
Voting terminates on:
Vieillissement de la population — Exigences générales et lignes
2021­10­12
directrices pour les organisations favorisant et appuyant les aidants
naturels
RECIPIENTS OF THIS DRAFT ARE INVITED TO
SUBMIT, WITH THEIR COMMENTS, NOTIFICATION
OF ANY RELEVANT PATENT RIGHTS OF WHICH
THEY ARE AWARE AND TO PROVIDE SUPPOR TING
DOCUMENTATION.
IN ADDITION TO THEIR EVALUATION AS
Reference number
BEING ACCEPTABLE FOR INDUSTRIAL, TECHNO­
ISO/FDIS 25551:2021(E)
LOGICAL, COMMERCIAL AND USER PURPOSES,
DRAFT INTERNATIONAL STANDARDS MAY ON
OCCASION HAVE TO BE CONSIDERED IN THE
LIGHT OF THEIR POTENTIAL TO BECOME STAN­
DARDS TO WHICH REFERENCE MAY BE MADE IN
NATIONAL REGULATIONS. ISO 2021
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ISO/FDIS 25551:2021(E)
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© ISO 2021

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ii © ISO 2021 – All rights reserved
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ISO/FDIS 25551:2021(E)
Contents Page

Foreword ........................................................................................................................................................................................................................................iv

Introduction ..................................................................................................................................................................................................................................v

1 Scope ................................................................................................................................................................................................................................. 1

2 Normative references ...................................................................................................................................................................................... 1

3 Terms and definitions ..................................................................................................................................................................................... 1

4 Principles ..................................................................................................................................................................................................................... 4

4.1 General ........................................................................................................................................................................................................... 4

4.2 Guiding principles ................................................................................................................................................................................ 4

5 Carer-inclusive program .............................................................................................................................................................................. 5

5.1 General ........................................................................................................................................................................................................... 5

5.2 Top management commitment, support, and leadership .................................................................................. 5

5.3 Worker consultation and participation ............................................................................................................................. 6

5.4 Carer-inclusive organization policy ...................................................................................................................................... 6

5.5 Regulatory and other requirements ..................................................................................................................................... 7

5.6 Social responsibility ........................................................................................................................................................................... 7

5.7 Review of internal practices and available supports ............................................................................................. 7

5.8 Identify gaps and barriers ............................................................................................................................................................. 8

5.9 Objectives and targets ....................................................................................................................................................................... 8

5.10 Confidential disclosure of working carers ...................................................................................................................... 9

5.11 Awareness, competence, and training ................................................................................................................................ 9

5.11.1 General...................................................................................................................................................................................... 9

5.11.2 Training .................................................................................................................................................................................... 9

5.12 Communication of available services .................................................................................................................................. 9

5.13 Carer culture ..........................................................................................................................................................................................10

5.14 Actions by organizations to provide necessary supports for working carers ...............................10

5.14.1 General...................................................................................................................................................................................10

5.14.2 Suggested actions .........................................................................................................................................................11

5.15 Response to unplanned or emergency caregiving situations ......................................................................11

5.16 Monitoring and measurement ................................................................................................................................................12

5.16.1 General...................................................................................................................................................................................12

5.16.2 Documentation ...............................................................................................................................................................12

6 Management review and continual improvement .........................................................................................................12

6.1 Review process ....................................................................................................................................................................................12

6.1.1 General...................................................................................................................................................................................12

6.1.2 Review input .....................................................................................................................................................................13

6.1.3 Review output .................................................................................................................................................................13

6.2 Continual improvement ...............................................................................................................................................................13

Annex A (informative) Sex-/gender-based lens .....................................................................................................................................15

Annex B (informative) Sample internal review checklist ............................................................................................................17

Bibliography .............................................................................................................................................................................................................................20

© ISO 2021 – All rights reserved iii
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ISO/FDIS 25551:2021(E)
Foreword

ISO (the International Organization for Standardization) is a worldwide federation of national standards

bodies (ISO member bodies). The work of preparing International Standards is normally carried out

through ISO technical committees. Each member body interested in a subject for which a technical

committee has been established has the right to be represented on that committee. International

organizations, governmental and non­governmental, in liaison with ISO, also take part in the work.

ISO collaborates closely with the International Electrotechnical Commission (IEC) on all matters of

electrotechnical standardization.

The procedures used to develop this document and those intended for its further maintenance are

described in the ISO/IEC Directives, Part 1. In particular, the different approval criteria needed for the

different types of ISO documents should be noted. This document was drafted in accordance with the

editorial rules of the ISO/IEC Directives, Part 2 (see www .iso .org/ directives).

Attention is drawn to the possibility that some of the elements of this document may be the subject of

patent rights. ISO shall not be held responsible for identifying any or all such patent rights. Details of

any patent rights identified during the development of the document will be in the Introduction and/or

on the ISO list of patent declarations received (see www .iso .org/ patents).

Any trade name used in this document is information given for the convenience of users and does not

constitute an endorsement.

For an explanation of the voluntary nature of standards, the meaning of ISO specific terms and

expressions related to conformity assessment, as well as information about ISO's adherence to the

World Trade Organization (WTO) principles in the Technical Barriers to Trade (TBT), see www .iso .org/

iso/ foreword .html.
This document was prepared by Technical Committee ISO/TC 314, Ageing societies.

Any feedback or questions on this document should be directed to the user’s national standards body. A

complete listing of these bodies can be found at www .iso .org/ members .html.
iv © ISO 2021 – All rights reserved
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ISO/FDIS 25551:2021(E)
Introduction
0.1 General

Worldwide, 349 million people are estimated to be care­dependent and of these, 101 million people

[1]

are over the age of 60 years. The form that long term care takes varies significantly among and

within countries, from home care services to institutional hospital­based 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

[2]

considerably reduces public care expenditure (estimated cost savings of 338 million euros). 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

[3][4][5][6]

are impacting the growing number of working carers. Studies show that their paid work is

negatively impacted by becoming a carer and in most situations, employers do not have policies or

[7]
programs in place to support these working carers.
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 carer­supportive 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

[8]

request flexible working arrangements to working carers (previously available to working parents).

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

provided or otherwise.
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ISO/FDIS 25551:2021(E)
0.3 Benefits of implementing a carer-inclusive program
Studies have shown that carer­inclusive 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 carer­inclusive program is seen as a process

that requires flexibility in terms of implementation.

A carer­inclusive 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 carer­inclusive 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

[9]

adults and others requiring long term care are females, and are likely to work outside the home.

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

[10][11]

financial circumstances. 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 carer­inclusive programs. It supports the aims of United Nations Declaration on Gender

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ISO/FDIS 25551:2021(E)
[12]

Responsive Standards and Standards Development to make standards more gender responsive.

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

[13][14]

value. 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, COVID­19 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

[15]
carers have seen a dramatic reduction in their income due to lockdown policies.

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://

[17]
committee .iso .org/ sites/ tc314/ home/ projects/ published/ resources .html .

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.
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ISO/FDIS 25551:2021(E)

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.
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FINAL DRAFT INTERNATIONAL STANDARD ISO/FDIS 25551:2021(E)
Ageing societies — General requirements and guidelines
for carer-inclusive organizations
1 Scope

This document specifies requirements and provides guidelines for an organizational program for

working carers providing care to:

— adult care recipients (e.g. adults with cognitive, sensory, physical, and invisible disabilities, adults

with chronic or episodic conditions and older dependents);

— long-term childcare recipients (e.g. due to chronic illness or permanent cognitive, sensory or

physical disability or injury).

This document is applicable to any organization, regardless of size, sector or community setting (i.e.

urban, rural or remote).

This document can be used in conjunction with an organization’s management systems, human

resource programs, and/or equity, diversity and inclusion programs, or on its own in the absence of a

formal workplace program to support working carers.
2 Normative references
There are no normative references in this document.
3 Terms and definitions
For the purposes of this document, the following terms and definitions apply.

ISO and IEC maintain terminological databases for use in standardization at the following addresses:

— ISO Online browsing platform: available at https:// www .iso .org/ obp
— IEC Electropedia: available at http:// www .electropedia .org/
3.1
care

activities/actions (social, physical, emotional, spiritual, mental) that take place across a variety of

settings: in the home, community, institution and all care settings
Note 1 to entry: Applies to both paid and unpaid care.
3.2
care recipient
person who is receiving care from the working carer
3.3
care worker
care provider

person who is paid to support someone who is ill, struggling or disabled and who could not manage

without this help

Note 1 to entry: In some countries and regions, similar phrases include: home care provider, home health care

professional, personal support worker, personal care assistant, certified caregiver, trained carer, care specialist,

and health care professional.
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ISO/FDIS 25551:2021(E)
3.4
carer
caregiver
family caregiver

person who cares, unpaid, for a family member, friend or significant person who, due to a lifelong

condition, illness, disability, serious injury, a mental health condition or an addiction, cannot cope

without their support

Note 1 to entry: This term includes carers who are generally unpaid but can receive some financial support for

care they provide from time to time. It does not include trained care providers affiliated with home care agencies.

Note 2 to entry: Carers can provide emotional or financial support, as well as hands-on help with different tasks.

Caregiving can also be done from long distance.

Note 3 to entry: The terms “carer”, “family caregiver” and “caregiver” are often used interchangeably. “Carer”

is more commonly used in Europe, UK, New Zealand, and Australia. In North America, “caregiver” or “family

caregiver” is more commonly used. In Asia “carer” more commonly refers to a paid care provider.

3.5
family

combination of two or more persons who are bound together over time by ties of mutual consent, birth

and/or adoption or placement and who, together, assume responsibilities for various roles and functions

Note 1 to entry: The term “family” can include “chosen families,” such as strong friendships and communities

where unrelated persons provide care normally provided by nuclear family members.

3.6
unpaid care
care provided without a monetary reward by carers

Note 1 to entry: “informal care” is often used to describe unpaid care but is becoming less acceptable as it does

not reflect the complexity and essential nature of care that is provided. Unpaid care is labour and provides

significant value to families, health care systems and the economy.
3.7
working carer

individual in full or part-time work who also provides care to a family member, friend or significant

person and where the care responsibilities have a substantial impact on their working life

Note 1 to entry: Persons with disabilities can be working carers as well as care recipients.

Note 2 to entry: Commonly used term in UK, Nordic countries and Europe. In Canada, "carer-worker" or "employee

carer" are also used.
3.8
young carer

children and young people who provide regular and prolonged care for ill or disabled family members,

including those with addictions and mental health issues

Note 1 to entry: The upper age limit for young carers can vary from 18 to 25 years. Some countries are using the

term young adult carers to distinguish between the age categories of young carers.

3.9
absenteeism

time taken off work, including periods of paid or unpaid leave, to attend to non­work­related

responsibilities such as self­care or caregiving­related matters

Note 1 to entry: Absenteeism includes any kind or amount of time off work, such as sick or vacation days, leaving

work early, or coming into work late.
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ISO/FDIS 25551:2021(E)
3.10
accommodation

intentional organizational actions, whether in policies, programs, or the organizational culture, which

relieves work-family conflict

Note 1 to entry: Accommodation can include flexible work arrangements, such as working from home, flexible

working hours, job sharing or giving workers more autonomy over their work schedules.

3.11
consultation
process of seeking views before making a decision

Note 1 to entry: Consultation includes engaging health and safety committees and workers’ representatives,

where they exist.
[SOURCE: ISO 45001:2018, 3.5]
3.12
organizational culture
values, beliefs and practices that influence the conduct, behavi
...