Good afternoon. My name is Natasha Parsons.  I want to talk to you about assistive equipment. A quick flick through the catalogues and it doesn’t take long to notice that items are horrifyingly similar – grey or white, big, bulky. Can you think of any other consumer products that are so collectively ugly.
Firstly I want to talk about why it’s relevant to OT. Next I’ll discuss some of the research findings from studies that I found when I carried out a literature review. Then I’ll give a summary of some of the key points from the studies and why, in turn it justified my project. Finally I’ll put forward some topics that would develop the subject area further.
Assistive equipment is often essential to self-care functions such as eating, communicating, bathing, and mobility, and often these are activities where you are seen by others in public settings. Historically equipment has been designed by engineers to meet functional specifications provided to them by medical professionals. Little thought has been given to either the form of disability equipment, or to consider that users may think of items in anything other than functional terms. This is at odds with the wider community, where people value how objects look. Think of iPods and mobile phones, where newer products are continuously appearing on the market that are smaller, more streamlined, and offer different colours to give more consumer choice. Only in recent years have designers, healthcare professionals and disabled users begun to question the assumptions upon which disability equipment is designed. A recent concept that addresses this imbalance is ‘Inclusive design’ where products are aimed at the wider community and not only intended for disabled users. This serves to reduce the segregation and discrimination that is felt by disabled users of specialist equipment. In order to achieve broader appeal, greater consideration has to be given to both function and aesthetics during product development. You can all think of situations with service users, where you’ve identified useful equipment, but service users have refused it based on how it looks, saying that they would be embarrassed to use it, or that it looks ugly. Or where items would make them feel old and disabled, when they don’t feel it. Or they share a house with others or have regular visitors they don’t want items that don’t fit in or look nice or that make their home look like that of a disabled person. So it would seem that because of the appearance of equipment, users may be refusing items that healthcare professionals have assessed they would benefit from, which may be limiting their participation in occupations, and their independence with consequences for their health and well-being.
The literature review targeted studies that investigated users’ attitudes towards their assistive equipment. Brooks found that on the one hand users were grateful for the improvement in function that they provided, but at the same time they neither liked the devices or having to use them. She found that attitudes to equipment related to utilisation. A more positive attitude was associated with higher utilisation in social settings, whereas a negative attitude was associated with less utilisation. Her study also showed that while users found equipment mostly beneficial, necessary, and a ‘key to normality’, 32% found them restricting, 32% found them inconvenient, and only 11% said they were always proud of their devices. You might think that pride is a strange term to use, but if you think about iPods again – they provide a useful function – providing music while you’re moving around, but people are also very proud to own them, because they look cool and stylish.
A common feeling amongst users in the studies is one of coming to terms with their disability. The equipment becomes a symbol of their new disabled identity, and often users find it difficult to incorporate the equipment into their preferred self-image – which is one of independence. They feel that equipment is a sign of need and dependency. Lund and Nygard’s study showed that some users had a more pragmatic approach that reflected the importance they placed on the desirable aspects such as increased participation in occupations; other users acknowledged the usefulness of devices but still felt unhappy that they were needed; whilst a third group preferred to give up occupations rather than acknowledge their dependence on the devices. Pippin and Fernie also found that users described feelings of inadequacy at having to accept the device and not being competent to fulfil daily activities. They found that concern with the negative image of the device was limited to the first mobility device and was temporary. Often the embarrassment was due to the physical impairment itself rather than the device, and, like Brooks, users reported no negative responses to their devices from others. It was noted that virtually all the participants had received compliments on their walking frames, even institutional ones repaired by tape, and users savoured this attention.
Studies found that users distinguished between equipment they found more normalising and others they saw as stigmatising and marginalising. Mann and Tomita found that users felt equipment draws unwanted attention, especially those clearly associated with impairment, for example metal walking frames , mobility canes, and raised toilet seats. These conveyed values of need and dependency, and they felt that these formed part of the identification of the individual. Other devices allowed them to present themselves in ways which fitted with dominant values associated with functioning, capable individuals who need little help from others. Lupton and Seymour found that computer technology was particularly well received, as these technologies are widely used in public settings. They felt strongly that their disability should not define their identities. To them ‘invisibility’ or social acceptance of equipment was important.
Assistive equipment, whether personal devices or minor adaptations to the home, that are more sympathetically designed and styled to user preferences and convey lifestyle, status and identification are likely to be more readily accepted. For example, a participant in a study by Hirsch et al, reported that although advised to install a grab rail in the bathroom, he found them too ‘institutional looking’, and used a towel rail instead, even though this could lead to falls. In Pugh and Stansfield’s study about adapted cups users felt strongly that the appearance of the cup was an important factor in deciding whether or not to use it. The cup most often prescribed by OTs was the least favourite of the participants who found it unattractive. The study found that cups not specifically designed for disabled people but which had useful features, were rated higher on appearance, often having a greater choice of colour, pattern and of size, features seldom available in adapted cups.
The research studies show that although people acknowledge the benefit of the increased function that equipment provides, they are often seen as a symbol of disability, and this projects onto a negative self image. People must focus on equipment as enabling participation and promoting functional independence if they are to be more readily accepted. Otherwise, people will continue to refuse equipment or reduce their occupational participation. The appearance of equipment is key to achieving this both in terms of how it fits with personal lifestyle and values, and how others perceive it. People feel stigmatised when using equipment that is visibly a disability aid. Products that fit with more widely accepted values are more readily accepted. I focussed specifically on the appearance of equipment, and how users felt about using it in different personal and public settings, and how it affected their occupational behaviour, looking at UK adults with a range of equipment. It is clear that a more thoughtful design process would incorporate either ‘inclusive design’ ideas, or at least a consideration of users’ lifestyle and personal values, as in the wider product market, and give users more choice. This in turn should make it easier for people to accept assistive equipment, reduce stigmatisation and result in greater participation in occupations.
How service users feel about the appearance of assistive equipment Natasha Parsons
Introduction <ul><li>Why is it relevant to OT? </li></ul><ul><li>What evidence is available? </li></ul><ul><li>Summary and justification for the project </li></ul><ul><li>Gaps for further research </li></ul>
Relevance to OT <ul><li>Functional design of equipment </li></ul><ul><li>‘ Inclusive design’ </li></ul><ul><li>Impact on occupational participation and independence </li></ul>
Literature review: findings <ul><li>Attitude towards assistive equipment linked to utilisation (Brooks, USA, 1991) </li></ul><ul><ul><li>Population: USA, adults, range of equipment </li></ul></ul><ul><ul><li>Mostly beneficial and a ‘key to normality’ </li></ul></ul><ul><ul><li>32% found them restricting, 32% inconvenient, and only 11% were proud of them. </li></ul></ul>
Literature review: findings (cont.) <ul><li>Successful incorporation of equipment into self–image led to greater participation in occupations (Lund and Nygard, 2003) </li></ul><ul><ul><li>Population: Sweden, adults, range of equipment </li></ul></ul><ul><li>Concern with the negative image of the device was limited to the first mobility device and was temporary (Pippin and Fernie, 1997) </li></ul><ul><ul><li>Population: USA, elderly, walking frames </li></ul></ul>
Literature review: findings (cont.) <ul><li>Products that are most visible as disability aids are often the most stigmatised (Mann and Tomita, 1998) </li></ul><ul><ul><li>Population: USA, elderly, range of equipment </li></ul></ul><ul><li>Products that fit with dominant values associated with functioning were well received e.g. computer technology (Lupton and Seymour, 2000) </li></ul><ul><ul><li>Population: Australia, adults, range of equipment </li></ul></ul>
Literature review: findings (cont.) <ul><li>Appearance of the device is an important factor in deciding whether or not to use it. This not only applied to personal devices but also devices for the home (Hirsch et al, 2000) </li></ul><ul><ul><li>Population: USA, elderly, range of equipment </li></ul></ul><ul><li>More choice leads to more interest in appearance (Pugh and Stansfield, 1989) </li></ul><ul><ul><li>Population: UK, adults, adapted cups </li></ul></ul>
Summary and justification for project <ul><li>Acceptance of equipment depends on incorporation of equipment into a self-image of independence, rather than disability </li></ul><ul><li>People feel stigmatised when using ‘visible’ equipment </li></ul><ul><li> More thoughtful design likely to lead to more acceptance of equipment and increased occupational participation </li></ul>
Areas for further research <ul><li>Investigate occupational participation with equipment designed with function and form in mind. </li></ul><ul><li>Demographic variations </li></ul><ul><li>Refusal rates </li></ul>
References <ul><li>Barber, Johan (1996). The design of disability products: a psychological perspective, British Journal of Occupational Therapy, 59(12), 561-564 </li></ul><ul><li>Brooks, Nancy A. (1991). Users’ responses to ADs for physical disability , Social Science Medicine , 32(12), 1417-1424 </li></ul><ul><li>Chamberlain E., Evans N., Neighbour K., Hughes J. (2001). Equipment: is it the answer. An audit of equipment provision, British Journal of Occupational Therapy , 64(12), 595-600 </li></ul><ul><li>Christie, I. and Mensah-Coker, G (1999) An inclusive future? Disability, social change and opportunities for greater inclusion by 2010, DEMOS, London </li></ul><ul><li>Hawkins, Rachael and Stewart, Sandra (2002). Changing rooms: the impact of adaptations on the meaning of home for a disabled person and the role of occupational therapists in the process, British Journal of Occupational Therapy , 65(2), 81-87 </li></ul><ul><li>Hirsch, T., Forlizzi, J., hyder, E., Goetz, J., Stroback, J., Kurtz, C. (2000). The ELDer project: social, emotional, and environmental factors in the design of eldercare technologies, ACM Conference on Universal Usability , 72-79 </li></ul><ul><li>Hocking, Claire (1999). Function or feelings: factors in abandonment of ADs, Technology and Disability , 11, 3-11 </li></ul><ul><li>Kronlof, Greta H. and Sonn, Ulla (1999). Elderly women’s way of relating to ADs, Technology and Disability , 10, 161-168. </li></ul><ul><li>Lau, Cynthia and O’Leary, Stephanie (1993). Comparison of computer interface devices for persons with severe physical disabilities, American Journal of Occupational Therapy , 47(11) 1022-1029 </li></ul><ul><li>Lund, Maria L. and Nygard, Louise (2003). Incorporating or resisting ADs: different approaches to achieving a desired occupational self-image, OTJR: Occupation, Participation and Health , 23(2), 67-75 </li></ul>
References (cont.) <ul><li>Lupton, Deborah and Seymour, Wendy (2000). Technology, selfhood and physical disability, Social Science and Medicine , 50, 1851-1862 </li></ul><ul><li>Mann, William C. and Tomita, Machiko (1998). Perspectives on ADs among elderly persons with disabilities, Technology and Disability , 9, 119-148 </li></ul><ul><li>Mulcahey, M. J. (1992). Returning to school after a spinal cord injury: perspectives from four adolescents, American Journal of Occupational Therapy , 46(4), 305-312 </li></ul><ul><li>Pape, T. L-B., Kim, J., Weiner, B. (2002). The shaping of individual meanings assigned to assistive technology: a review of personal factors, Disability and Rehabilitation , 24(1/2/3), 5-20 </li></ul><ul><li>Pippin, Ken and Fernie, Geoffrey R. (1997). Designing devices that are acceptable to the frail elderly: a new understanding based upon how older people perceive a walker, Technology and Disability , 7, 93-102 </li></ul><ul><li>Pope, C and Mays, N. (2001) Qualitative Research in Health Care , BMJ Publishing group </li></ul><ul><li>Pugh, Moyra and Stansfield, Sharon (1989). Drinking equipment: preparing a DEAP report, British Journal of Occupational Therapy , 52(11), 416-420 </li></ul><ul><li>Winchcombe, M. and Silver, D. (2000) Into the mainstream, bringing products for easier living out of the disability closet, DLCC, Manchester. </li></ul><ul><li>Department of Health (2000) The NHS Plan: a plan for investment; a plan for reform </li></ul><ul><li>Department of Health (2001) Guide to Integrating Community Equipment Services </li></ul><ul><li>Department of Health (2001) Community Equipment Services </li></ul><ul><li>The Audit Commission (2002) Fully Equipped </li></ul>