Evidence
Alert

Why do people abandon assistive technologies? Research suggests users need to be partners in design

Many people with long term - chronic - conditions need a lot of support in their daily lives. A wide range of assistive technologies are designed to help, including wheelchairs, hearing aids, and electronic devices. But people often give up using them.

Researchers wanted to identify the main reasons why. They found common barriers to use among people with all kinds of chronic conditions.

The findings suggest that the design and provision of assistive technologies must change. The researchers suggest that users must be more involved in the design process. A shift in emphasis is needed from the clinician being the expert, to more patient-specific solutions with designs and decisions based on each person’s needs. Change at the level of government, industry and commissioners will be required to achieve this, but also among clinicians and the users themselves.

What’s the issue?

About 15 million people in England have a chronic condition, which can be managed but not cured. They are most common in older people and in more deprived groups and are usually life-long. They have a negative impact on the person’s quality of life. They include diseases (such as diabetes, arthritis, epilepsy), mental health conditions (such as depression, schizophrenia) and physical disabilities (such as blindness, joint disorders, loss of limbs).

Acute medicine, for injuries or diseases which can be cured or fixed, once accounted for most medical care. There has been a shift and half of all GP appointments now relate to chronic conditions; their care is estimated to cost £7 in every £10 of total health and social care expenditure. But healthcare is still based on a model that assumes people will recover.

Those with chronic conditions instead need to actively collaborate in their own care and self-manage their health over the long term. So-called assistive technologies can help people live independently and take part in society. They can reduce distressing symptoms and maximise the user's health and wellbeing.

Assistive technologies include a diverse range of devices such as prosthetics (artificial body parts such as a leg for after amputation), hearing aids, mobility aids such as wheelchairs and walking sticks, memory/planning aids, communication aids for people unable to use their own voice, and devices to help people use household items.

Yet up to seven in ten people abandon their assistive technology. In some cases, this is because their condition has improved, but it can also be because the technology does not meet their needs. The researchers wanted to identify the barriers that prevent people with chronic conditions using assistive technologies.

What’s new?

The researchers reviewed published studies on assistive technologies from around the world. They focussed on research into the barriers to use by adults with chronic conditions. They analysed 40 papers covering a wide range of health conditions such as dementia, stroke and impaired mobility. The studies included a mixture of assistive technologies.

The research team identified six main barriers to the use of assistive technologies:

  • Design and function, including lack of user and therapist involvement in the design process, lack of options for customising it, high purchase and maintenance costs, and not being easy to use. Some technologies were too big or heavy for the user to carry, or to use in their home. Others could not be used in certain environments, for example, if sunlight caused glaring on a screen.
  • Information and awareness, including a lack of training or instructions, lack of user knowledge about products and services, and health professionals not knowing enough about the technology available.
  • Service provision, including a lack of person-centred care. Users wanted to choose their own equipment; they became frustrated when they were not involved in the decision. The application process involved paperwork, which could be a barrier, and delays sometimes meant that the technology arrived after the user’s condition had deteriorated too far for them to use it.
  • Psychological barriers, such as a user’s previous disappointment with the technology, or the feeling that it was annoying, awkward or not appropriate for them.
  • Support network, including negative views, and a lack of encouragement to use the technology, from family and carers. Users wanted information on how to use the technology from those with similar conditions but felt there was a lack of opportunities to access peer support.
  • Societal barriers, such as stigma. The negative attitudes of others could make people feel vulnerable and self-conscious about using technologies in public. Infrastructure – for example where paths lack access ramps, shops have narrow aisles, or public transport is poorly designed – can be a barrier. Users were concerned that they are not represented at policy level and that government recognition of assistive technologies is lacking.

The researchers say the barriers are interconnected and cannot be resolved independently of each other. A well-designed device that overcomes the ‘function’ barrier will not on its own increase access unless psychological, societal and other barriers are also taken into account.

Why is this important?

This research suggests that services need to better reflect the shift towards promoting long-term self-management for people with chronic conditions. Assistive technologies need to be designed in partnership with users to create devices that better meet individuals' needs. Users need to be able to customise devices; designers and those who prescribe them could encourage creative problem-solving. People with chronic conditions need accurate and accessible information about the technologies available to them.

The way researchers gauge the success of assistive technologies also needs to be addressed. Research should take the experiences and opinions of users into account and look at the impact on their overall health and wellbeing.

On a wider scale, barriers to using assistive technologies in the urban environment need to be addressed in planning and building.

What’s next?

People with chronic conditions already customise standard household devices and personalise their assistive technologies. They adapt kitchen equipment and use their smartphones and tablets for home-made telecare systems. Further research could explore how much this at-home customisation improves health and wellbeing.

This research team is beginning to apply co-design principles into a healthcare setting. Starting on a small scale, they are working with three people in need of customised assistive technology. These potential users have identified the main challenges they face in their daily lives. The researchers are working with them to design useful assistive technology tools.

You may be interested to read

The full paper: Howard J and others. Exploring the barriers to using assistive technology for individuals with chronic conditions: a meta-synthesis review. Disabil Rehabil Assist Technol. 2020;14:1-19

Information about assistive technology from the World Health Organisation

Factsheet about assistive technology by Together For Short Lives 

Information about assistive technology for people with dementia by Alzheimer's Society 

Funding

This research was supported by Health and Care Research Wales through the Research for Public Patient Benefit Scheme.

Commentaries

Study author

An awful lot of information got pulled out during this research and we identified many barriers. It lays the foundations for a lot of future work.

We’re currently working on addressing the lack of customisation and user involvement in device design. We’re co-designing – working with the end user to develop and design devices that meet their needs. Some peoples’ needs can’t be met by something they buy off a shelf. I’ve designed a number of different devices customised to meet their needs and deal with the issues they wanted to overcome.

One of our case studies is a lady with multiple sclerosis. She has to take an oral spray-type medication, but she couldn’t use it by herself. I designed a spray mechanism she’s able to attach to the bottle to trigger it.

By engaging with people, you find out what they really want and need, and what their priorities are.

Jonathan Howard, Clinical Scientist, Rehabilitation Engineering Unit, Morriston Hospital Swansea

Researcher

This broad review shows that changes are needed across the board. Service users, health and social care providers, commissioners, policymakers, and all professionals who provide, or work with people who use assistive technology, could learn from this. Assistive technology device manufacturers also need to know about this research.

Providing more adequate resources would allow services to take a more person-centred approach to assistive technology provision. This could include time to fully involve individual users in the process, offer them access to a wider spectrum of available technology, and provide more frequent follow-up.

Mark Hawley, Professor of Health Services Research, Rehabilitation and Assistive Technology Research Group, University of Sheffield

Lived experience

I have multiple long-term health conditions and I’m disabled to a large degree by them in terms of mobility, strength, stamina, and dexterity. I try to manage my life using whatever means are possible. I would be interested in any method, technological or otherwise, that could help me in my daily life, and in managing my condition. This research identifies themes and commonalities that could help researchers better support those of us living with chronic conditions.

Better technologies that are easy, accessible and realistic to use could help patients like me manage our conditions so that they have less impact on our lives and cause less disability. This would reduce our reliance on social care, friends and family.

Private companies may be able to help develop and trial new technologies and provide training and support in their use. Local and national healthcare decision makers could use the findings to direct future research. Health professionals, charities and patient support groups could participate in trials of technologies.

Victoria Bartle, Public Contributor, Newcastle

Lived experience

As someone with a chronic condition, who is also a carer for someone with chronic conditions, I find this research into the barriers to accessing assistive technology important.

If you are not digitally literate it can be hard to understand how to use technology. Language and culture could also be barriers. Some people like face-to-face care and support, and may feel resentful and not keen on assistive technology.

Hameed Khan, Public Contributor, Manchester

Diabetes UK

We support end-users being involved at the earliest possible stages of tech development. Without meaningful involvement, companies risk developing tech that isn’t right for the people they want to serve. Our tech survey last year found that people with diabetes definitely felt tech companies responding to their needs was very important.

Nikki Joule, Policy Manager, Diabetes UK

Conflicts of Interest

None declared.