Inclusive healthcare practice

Almost everyone finds themselves in hospital at some time whether as a patient or a visitor. Consequently, we are talking about the whole of our diverse population. But how well is diversity, equity and inclusion considered in healthcare practice? If the statistics are anything to go by, we are not doing well. Marginalised groups experience poorer health outcomes. The conditions in which people live – referred to as the “social determinants of health” – are the main reason for this.

Thirteen people were involved in devising 12 Tips for Inclusive Practice in Healthcare Settings.

A man in a white hospital shirt is wearing a blue face mask and has a stethoscope around his neck. He is looking into the camera and is posing with a thumbs up sign.

Appropriate terminology is a major feature in the list of 12 tips. Non-judgmental factual terms are preferred. Labels such as “obese” or “schizophrenic” can imply blame or non-compliance. And some patients will want to use non-binary gender terms when referring to themselves. Using the person’s preferred terms is recommended in all situations as these can vary. For example some people say they are autistic and others will say they have autism. Then there are people with multiple identities (intersectionality).

The 12 Tips for Inclusive Practice

Here is a brief outline of the the 12 tips.

Tip 1: Beware of assumptions and stereotypes: An individual might have multiple diverse characteristics. In the absence of early information it is easy to assume some things by default. A wheelchair user might conjure up assumptions about the health and ability to make decisions. A person accompanying a patient may be assumed to be a partner or family member.

Tip 2: Replace labels with appropriate terminology: The main point here is to keep up to date with best-practice terminology. For example, guidelines for preferred language for First Nations people is shifting and evolving. Some terms considered derogatory are now embraced by some (queer, autistic).

Tip 3: Use inclusive language: words can exclude and “other” people when they deemed to be different to oneself.

Tip 4: Ensure inclusive physical spaces: Accommodating physical, sensory and cognitive needs improves patient experience. Inclusive design goes beyond legislated minimum access requirements for buildings. For example gowns, furniture, and blood pressure cuffs, should accommodate all sizes.

Tip 5: Inclusive signage and symbols: A rainbow flag or First Nations flag will make people feel welcome. However, the use of these signs needs to be accompanied by inclusive care to avoid disappointment.

Tip 6: Appropriate communication methods: This is where body language and auditory input come into play. Not everyone processes these cues well and sometimes information is better put in writing.

Tip 7: Adopt a Strengths-Based Approach: This approach avoids stereotyping and acknowledges patients’ capacity for resilience and builds on their strengths.

Tips 8 – 12 focus on the health system and healthcare delivery and encourages health workers to advocate for improvements.

The title of the Australian open access article is Inclusive Practice in Healthcare Settings.

Abstract

This paper outlines practical tips for inclusive healthcare practice and service delivery, covering diversity aspects and intersectionality. A team with wide-ranging lived experiences from a national public health association’s diversity, equity, and inclusion group compiled the tips, which were reiteratively discussed and refined. The final twelve tips were selected for practical and broad applicability.

The twelve chosen tips are: (a) beware of assumptions and stereotypes, (b) replace labels with appropriate terminology, (c) use inclusive language, (d) ensure inclusivity in physical space, (e) use inclusive signage, (f) ensure appropriate communication methods, (g) adopt a strength-based approach, (h) ensure inclusivity in research, (i) expand the scope of inclusive healthcare delivery, (j) advocate for inclusivity, (k) self-educate on diversity in all its forms, and (l) build individual and institutional commitments.

The twelve tips are applicable across many aspects of diversity. They provide a practical guide for all healthcare workers and students to improve practices. These tips guide healthcare facilities and workers in improving patient-centered care, especially for those who are often overlooked in mainstream service provision.

The 12 tips for inclusive healthcare with five underpinning concepts: diversity, equity, inclusion, intersectionality, strengths based approach.

8-Inclusion needs to prevent discrimination

The 7 Principles and the 8 Goals of universal design have their roots in the built environment and people with disability. We have moved on since their inception to thinking about how other marginalised groups can be included. With this thinking comes intersectionality where an individual can be a member of more than one of those groups. For example, a female refugee with a disability.

The 8-Inclusion Needs framework sits alongside the classic 7 Principles and the practical 8 Goals of universal design. Together they provide a more holistic view of the real lives of people.

A human head shape with a montage of photos of many different people.

The framework seeks to provide a new perspective for shifting the focus from a list of identities to addressing the needs of all people. As such it provides a guide for inclusive designs and interventions that eliminate discrimination. It also provides another perspective on the amorphous term “diversity”.

The 8-Inclusion Needs of All People framework

The results of the literature review formed the basis of the 8-Inclusion Needs framework. Briefly, they are:

1. Access – Ensuring all people can see and hear, or understand via alternatives, what is being communicated; and physically access or use what is being provided.
2. Space – Ensuring there is a space provided that allows all people to feel, and are, safe to do what they need to do.
3. Opportunity – Ensuring all people are provided opportunity to fulfil their potential.
4. Representation – Ensuring all people can contribute and are equally heard and valued.
5. Allowance – Ensuring allowances are made without judgement to accommodate the specific needs of all people.
6. Language – Ensuring the choice of words or language consider the specific needs of all people.
7. Respect – Ensuring the history, identity, and beliefs of all people are respectfully considered.
8. Support – Ensuring additional support is provided to enable all people to achieve desired outcomes.

Individual identities – a list

Identities included in the analysis of research on the lived-experience of underrepresented identities:

    • Gender
    • Race/ethnicity
    • Socio-economic status/class
    • Indigenous
    • LGBTQI+
    • Disability
    • Religion
    • Age
    • Immigrant
    • Illness (physical or mental)
    • Refugee
    • Veteran
    • Neurodiversity

The title of the article is, The 8-Inclusion Needs of All People: A proposed Framework to Address Intersectionality in Efforts to Prevent Discrimination. Published in the International Journal of Social Science Research and Review.

From the abstract

This paper begins by highlighting the current state of inclusion, and then reviews research on the application of intersectionality to address discrimination.

The literature review includes an overview of existing models designed to assist the application of intersectionality in reducing discrimination.

An analysis of research was carried out on the discrimination on 13 individual identities and 5 intersectional identities. A new framework called the 8-Inclusion Needs of All People is based on 8 common themes.

The framework is illustrated with recommendations for application in government and policy making, the law, advocacy work, and in organizations. This goal is to provide a useful framework for expediting social justice and equitable outcomes for all people.

Caring cities are inclusive cities

Care is both a need and a service, but it is also a social value that helps qualify how services, assistance, and support are provided. The value of care aims to keep people feeling safe and maintains their dignity. And caring cities are inclusive cities. A policy paper for the World Summit of LoA narrow pedestrian street with market stalls and shops. A caring city is an inclusive city.cal and Regional Leaders at local government level proposes some thoughts on this.

A city that cares fulfils its human rights obligations as well as the needs and aspirations of everyone. Places and spaces should be available, acceptable, accessible, and affordable for everyone. This means city and community ecosystems need a new social contract to be caring. This contract should involve collaboration and be based on respect for people and the environment. 

The policy paper discusses the challenges and sets some recommendations for local and regional governments and some points on taking local action. This paper will be of interest to policy makers in all levels of government. 

Enabling Environments for Local Action

“The responsibility for caring extends across all of government. Local and regional governments need to be supported and enabled to make the necessary transformations in favour of caring systems. To this end, this paper recommends taking the following actions at the national level:

a. Enact adequate, inclusive regulatory and policy frameworks establishing the basis for green, sustainable, and accessible public services and infrastructure

b. Sustain adequate transfer and allocation of financial resources to strengthen local-level technical capacity and enable efficient implementation.

c. Establish the legal foundations to institutionalize meaningful participatory and multi-level governance that considers the whole of society, moving past political alliances and promoting government accountability at all levels.”

Joint way forward

Governments at all levels need to share responsibility for creating caring systems by collaborating with communities. The policy paper recommends establishing strong partnerships and collaboration to enable social change. Here are some of the key points: 

        • Care is a human right and a public good and universal access to it
        • Establishing collaborative platforms and social dialogue
        • Challenging the gendered division of labour of paid and unpaid care work
        • Respect for local and indigenous knowledge
        • Accessible and ethical information management

The title of the policy paper is Caring Systems and was presented at the UCLG World Congress and Summit of World Leaders held October 2022 in Korea.

UCLG = United Cities and Local Government.

Universal design standard from Europe

Universal design is a design thinking process so a universal design standard is a contradiction in terms. Standards are fixed where universal design is a continuous improvement process. However, where designers cannot grasp the concept of an inclusive thinking process, a set of design directions is needed. Hence a new European universal design standard for products, goods and services.

Front cover of the Design for All standard.

The standard sets out requirements and recommendations for extending the customer base for products and services. It’s for organisations that design and manufacture products and/or provide services. The aim is to ensure products and services are available to the widest range of users possible.

Diverse user needs, characteristics, capabilities and preferences area all covered. It is based on processes of user involvement and building on accessibility knowledge. The standard can also be used for complying with legislation and to advance corporate social responsibility. 

The standard was developed by Ireland’s National Disability Authority that houses the Centre for Excellence in Universal Design. The document has the title “design for all” which is a recognised European term, but notes that universal design, barrier-free-design and transgenerational design are the same thing. 

Design for All – Accessibility following a Design for All approach in products, goods and services – Extending the range of users can be purchased from the standards authority

There is a media release explaining a little more. The regular complaint about standards is the cost of purchase and could be a reason why they are ignored.

Learning about standards

It is assumed that students in design disciplines, such as engineering, automatically learn about standards and how they are developed. According to an article by Jenny Darzentas this is not the case. The way standards are developed and written makes them difficult to understand and apply. Too much emphasis is placed on “learning on the job”. 

view from the back of a university lecture theatre where students are seated listening to a lecture.

Darzentas says that education about standards in universal design courses would be beneficial. In Japan, Korea and China this is included, but not in Europe and North America. 

Access to standards documents is not usually discussed as a barrier to accessibility and universal design. However, people not only need easy access the documents, but also the information should be easy to access. Is this an argument for standards to follow the concepts of universal design?

The title of the article is, Educating Students About Standardisation Relating to Universal Design. How well do Australian universities address standards in courses where universal design is part of the course?

Abstract

Standardisation education is rarely taught to students in the design disciplines in academic settings, and consequently there is not much evidence about best practices. This paper examines this situation, and elaborates on some of the possible reasons for this situation. Further, it gives an example of how students may be instructed and encouraged to further their interests in standards and the standardization-making process as a means for increasing Universal Design in practice.

This article comes from the published papers from the 2016 Universal Design Conference held in York, UK, which are open access.

10 Things to know about Universal Design

Page with 10 things to know about universal design.The Centre for Excellence in Universal Design in Ireland has a comprehensive list that covers all the myths and misinformation about the purpose of universal design. Briefly, the 10 things to know about universal design are:
      1. Universal design strives to improve the original design concept by making it more inclusive
      2. Universally designed products can have a high aesthetic value
      3. Universal design is much more than just a new design trend
      4. Universal design does not aim to replace the design of products targeted at specific markets
      5. Universal design is not another name for compliance with accessible design standards
      6. Universal design benefits more people than older people and people with disabilities
      7. Universal design can be undertaken by any designer, not just specialists
      8. Universal design should be integrated throughout the design process
      9. Universal design is not just about ‘one size fits all’
      10. A universally designed product is the goal: universal design is the process
Editor’s comment: the CEUD website is looking a little dated, but the content remains valid and is good for newcomers to the topic. There are several guidelines for practitioners too.  See more detail about these 10 things and other resources on the Centre for Excellence in Universal Design website.  There are more explanations in the What is Universal Design section of this website. 

3rd Generation universal design

One of the conundrums of the quest for inclusion, is that individuals have to identify as excluded so that they can get included. That’s because the people already included are doing the including by deciding whether to invite you in. What if inclusion was thought about as “nonclusion”? This is the proposition in a paper on 3rd generation universal design.
 
“Nonclusive design means design that resists categorisations of bodies/roles and that does not come with predefined or presupposed limits in terms of who it is meant for.
Inclusion is one group looking at another group and thinking about "Them".
 
The authors say that “nonclusive design” is an essential element in the shift towards 3rd generation universal design. They define nonclusive design as a design that resists categorisations of bodies and roles. It does not come with with predetermined limits of who it is meant for. Therefore designs incorporate human diversity without reference to existing or traditional ways of doing things.
 
Nonclusive design is about intersectional thinking focused on unity rather than separation. The title of the paper is, Towards 3rd Generation Universal Design: Exploring Nonclusive Design. Universal design is more than 50 years old. The first generation began with wheelchair users and the public built environment. The second generation brought additional excluded groups into focus. But the real aim of universal design is to have no excluded groups at all – the 3rd generation concept.

Not yet for everyone

The authors argue that while universal design is for everyone, thinking largely remains in the first generation of universal design. By creating a new word, nonclusion, they hope it takes thinking to a place with difference is a fundamental element of being human. Creating a new word might help, but regardless, we are still thinking about a future that is yet to exist.
 
If we have nonclusive design, will a change of name from universal design change existing mindsets? The issue is also discussed in a 2009 paper, Turning Back Time for Inclusion for Today as Well as Tomorrow. Inclusion is problematic because it requires those who are already included to invite excluded people into the group. Semantics can be important. What we need is inclusiveness – that’s where inclusion has already happened and there are no exclusions. Inclusion is a futuristic concept because it is something we are striving for. If we were inclusive, no discussion would be needed.

From the abstract

In this paper, we identify and describe early signs of a shift towards 3rd generation UD, of which “nonclusive design” is an essential part. Nonclusive design means design that resists categorisations of bodies/roles and that does not come with predefined or presupposed limits in terms of who it is meant for. We outline seven themes characterising the shift towards nonclusive design:
 
  • from included to undefined users
  • from person to function
  • from adaptism to variation
  • from sparation to convergence
  • from reactive to proactive
  • from unaware to aware
  • from explicit to tacit
Graphic of stick people in various poses with the caption, "Inclusiveness,, looking at everyone
Nonclusive design directs attention to context instead of the individual, focusing on possibilities, functions and facilities. It highlights variation and unity rather than separation.
 
Nonclusive design presupposes awareness, knowledge and proactive development void of adaptism. It incorporates human variation without reiterating patterns of norm-deviation. We argue that the continued growth of universal design demands, is part of, and contributes to a shift in culture, with nonclusive, intersectional thinking as a key future driver. In such a culture, 3rd generation universal design can contribute as a common guiding mindset, as a source for innovation, as a way to listen for diversity Images created for the conference presentation, Turning Back Time for Today as well as Tomorrow.

Toilet signage and nonclusion

A further paper by the same research group discusses three versions of toilet signage in more detail than the paper above. The purpose is to find a way to be inclusive without depicting exceptions.
  • Addition – adding more pictograms of different persons
  • Combination – using composite pictograms
  • Nonclusion – not depicting persons, bodies or roles at all.
Image shows the version with additions
A toilet door sign with four icons: access, man, woman, baby change with a woman and a baby.
The title of the paper is, Moving beyond human bodies on display – signs of a shift in categorisation. Scroll down the list of papers to reach the paper which is in English. This paper is prelude to further research. The key issue underpinning this work is that the quest for inclusion relies on “the included” to do the including.  

Diversity and inclusion: not the same thing

The feet of two dancers. The woman is wearing red and white shoes and the man regular black shoes“Diversity is being asked to the party; inclusion is being asked to dance.” This is a great quote from Verna Myers. She is referring to the workplace and the employment and advancement of women and people of colour. It is relevant to all other groups because diversity and inclusion are both part of the movement for more inclusive and equitable societies.

The Harvard Business Review discusses this issue in Diversity doesn’t stick without inclusion. It is one thing to have a diverse population, but that doesn’t mean equity or inclusion will automatically follow. Diversity and inclusion are often lumped together in the employment context. They are assumed to be the same thing. But this is not the case.

In the workplace, diversity equals representation. Attracting diverse talent requires full participation to foster innovation and growth. This is inclusion. Getting diverse talent is one thing, including them fully is another. 

Diversity & Inclusion: Start Here

A hand-drawn graphic with faces of bright colours with big eyes. They are grouped in a bunch.

The Commons Social Change Library is about social change and driving social movements in Australia. While the context of their guide is about driving social change, most of the information is applicable in any situation. 

The Diversity & Inclusion: Start Here guide introduces key concepts and links to other resources. The key point is that inclusion is a social change movement and we can all do our part by including marginalised people in our ranks. That’s whether it’s the workforce, our local sporting team or our social change campaigns.

Carly Findlay is a disability activist who reminds us that disability is part of diversity. Carly’s video explains her experience. Judy Heumann’s TED talk is also worth a look. 

Kimberlé Crenshaw’s TED talk, The urgency of intersectionality is about race and gender bias. 

Kaytee Ray-Riek discusses marginalisation across the spectrum and ways of building trust and encouraging inclusive practice.  

Organisers of social justice events sometimes forget the basics of inclusion. Make your social justice event accessible spells out how to do it. 

Before people can get to an event they usually need information. The Internet is usually the first stop. So it’s important to Improve your website accessibility

There are many more resources on this website – you don’t need to be a campaigner to benefit from them. 

Brightly coloured books on a bookshelf with titles that represent social change.

The Commons Social Change Library is a not for profit organisation committed to educating for community action. They collect, curate and distribute the key lessons and resources of progressive movements around Australia and across the globe.

Editor’s note: I co-wrote a paper on inclusion being something where you have to wait for the “mainstream” group to invite you in. Inclusiveness is something that is present, it is happening now. You can see the slideshow version too which has some explanatory graphics.

Inclusive Victoria – the plan

Front cover of the Inclusive Victoria state plan. The Victorian State Disability Plan has a great introduction that includes language and terminology. It acknowledges there is no one right, or universal way to conceptualise disability. That’s because people perceive disability in culturally specific ways. Some people are proud to identify themselves as disabled, whereas others don’t want their disability to define them. Similarly, many autistic and neurodiverse people don’t see autism as a disability. They just see autism at a different way of interacting with the world. The State Disability Plan 2022-2026 is titled, Inclusive Victoria

From the introduction

Here is a nicely worded section from the introduction on language:

“Language is a powerful tool for changing community attitudes,
promoting inclusion and fostering disability pride. Throughout
history, people with disability have fought for changes to
language that reflect their human rights. We know language
is always changing, and we recognise that words are powerful
and have different meaning for different people. We recognise
that people with disability have different preferences regarding
how they describe their disability.”

This introduction explains how language is used throughout the document. It highlights the real importance language plays in community attitudes towards people with disability. A good example for other government documents and policies that are based on a marginalised group. 

The plan contains facts and figures about the prevalence of disability and other statistics. The international, national, state and local government obligations are laid out in a straightforward table format. The key elements of the plan are:

      1. Inclusive communities: Changing attitudes, transport, digital inclusion, sport and tourism.
      2. Health, housing and wellbeing: Health, mental health housing, NDIS, children and families.
      3. Fairness and Safety: Emergencies, advocacy, abuse and neglect, justice system, and gender identity.
      4. Opportunity and pride: Education, employment, voice and leadership, pride and recognition. 

Systemic reform

Most disability plans are action plans. This document includes systemic reform which should underpin actions and outcomes. The six systemic reforms are listed as:

      1. Co-design with people with disability
      2. Aboriginal self-determination
      3. Intersectional approaches
      4. Accessible communications and universal design
      5. Disability confident and inclusive workforces’
      6. Effective data and outcomes reporting

Inclusive Victoria is nicely presented with relatively plain language throughout. 

Easy Read Disability Strategy

Front cover of Easy Read Disability Strategy.The National Disability Insurance Agency (NDIA) has an Easy Read guide to the Disability Strategy 2021-2031. However, you need good reading and web navigation skills to get to it. The information is spaced out over 44 pages in the PDF version. 

The key objective of the strategy is about living a life you want to live. The goals are:

      1. Working and earning money
      2. Inclusive homes and communities – living where you want to live
      3. Rights for fair treatment and feeling safe
      4. Getting support as an individual and to be part of the community
      5. Being independent
      6. Learning and getting skills
      7. Access to health services and enjoying life
      8. More inclusive community attitudes
      9. Getting the outcomes we want by working together

The text only Easy Read Word document is on the Disability Gateway website.

The NDIS website has two other reports:

Home and Living consultation summary report

Support for Decision Making consultation summary report  

There are Easy Read versions of the reports and a videos with Auslan if you scroll down the each report page. 

There is also an Easy Read version of the UN Convention on the Rights of Persons with Disability

 

Universal design and cognitive accessibility

Partial view of a bronze statue of a man with his head in his hand. It represents thinking. Universal design for cognitive accessibility.Universal design is most commonly associated with the built environment. This is where the physical barriers to inclusion are most visible. But the concept of universal design goes beyond this to include cognitive accessibility.

Emily Steel writes a concise article on how universal design informs cognitive accessibility standards. There are many types of cognitive disability and it would be difficult to have separate standards for each one. So the working group has adopted the Universal Design for Learning framework to promote better design for all people.

Brightly coloured strips lay on top of each other, each one with the day of the week. Universal design for cognitive accessibility.The working group has published two standards since forming in 2015. The first provides guidelines for the design of products to support daily time management. The second is about the design and development of systems, products, services and built environments. A third standard is under development. This one sets out the requirements for reporting the cognitive accessibility of products and systems. 

As an international standard, working group participants come from around the world and include people with diverse cognition. Online meetings replaced the face to face workshops during the COVID pandemic. 

The article, published in Design for All India Newsletter, provides more detail about how the group works. It’s Article 2 in the October 2021 edition. The online Newsletter is produced in Verdana Bold and is fully justified and also includes a lot of Italicised text. This is not a universally designed publication. 

You can directly download the article titled, Universal design informs cognitive accessibility standards

Interested in this work?

The working group is keen to integrate lived experiences into the guidelines and any revisions. If you are interested in this work you can contact the Technical Committee Secretariat

Dr Emily Steel is the Australian delegate on the International Standards Organization (ISO) cognitive accessibility working group. She also conducted a workshop at the Australian Universal Design Conference UD2021. Dr Steel is also a CUDA board member.

Ageism is bad for your health

An older woman's pair of hands. A common ageist and patronising image of an older person.
A common ageist image. Why not her face?

We have to stop ageism at the older end of the age spectrum. Why? Because it’s killing us. The World Health Organization, says older people who hold negative views about their own ageing will live 7.5 years less than people with positive attitudes. So where do these negative views come from? Everywhere it seems. Ageism is bad for your health because ageing is framed as a negative experience. 

An article in the Sydney Morning Herald reports on this phenomenon. Ageist comments, such as “silly old duck” or “they are useless with technology” are socially accepted. Calling someone an “old dear” is not a term of endearment. Language matters because it is an expression of how we think. Ageism is yet to be properly recognised as damaging, unlike racism and sexism.  But we must be careful with the term ageism.

Ageism is always referred to as an older age issue. However, it is not. Anyone of any age can be subject to ageism. In Europe, the only region with data on all age groups, younger people report more age discrimination than other age groups. Philip Taylor has more to say on this in his UD2021 presentation. 

Ageism affects everyone. Children are brought up in a culture of age stereotypes that guide their behaviours towards people of different ages. They also learn how to perceive themselves at various stages of life. 

The WHO says that ageism is everywhere – in our institutions and relationships to ourselves. For example:

    • Policies that support healthcare rationing by age,
    • Practices that limit younger people’s opportunities to contribute to decision-making in the workplace
    • Patronising behaviour used between older and younger people
    • Self-limiting behaviour based on our own ideas of what a certain age can or cannot do. 

Is ageism really a problem?

This section from the WHO website on ageism says it is:

Two women sit on a bird nest swing depicting a positive image of older people.
Two older women on a bird nest swing. A more positive image.

Ageism can change how we view ourselves, erode solidarity between generations, devalue or limit our ability to benefit from what younger and older populations can contribute. It can impact our health, longevity and well-being while also having far-reaching economic consequences. Ageism is associated with earlier death (by 7.5 years), poorer physical and mental health, and slower recovery from disability in older age.

Ageism also increases risky health behaviors, such as eating an unhealthy diet, drinking excessively or smoking, and reduces our quality of life. In the United States, one in every seven dollars spent on health care every year for the eight most expensive conditions was due to ageism (US$ 63 billion in total).

Other posts on ageing and ageism include Are you Ageist? Probably. and Market segmentation by age – does it work?  

 

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