CHAPTER 8 Within the conceptual models of occupational therapy there is recognition of the complex relationship between the person and the environment. Environmental influences can both support and inhibit participation. Occupational therapy aims to facilitate positive interaction with the environment whilst recognising factors which contribute to restricted participation. Technology plays a key part in all our lives and has significantly advanced the range of potential solutions. This chapter offers practical guidance in the use of technology to support participation for people living with long-term neurological conditions. Theoretical models of occupational therapy conceptualise occupational performance as the ‘dynamic interaction of person, occupation, and environment’ (Townsend and Polatajko, 2007). The context of the person and occupational performance are described within earlier chapters of this book. The focus of the environment incorporates both the physical attributes and the social influences including culture and attitudes and how this enables or inhibits occupational performance. Aspects of the social aspects of the environment are considered within Chapter 9, allowing a more specific focus on the built environment throughout this chapter. The World Health Organisation (WHO, 2002) defines environmental factors of the International Classification of Functioning, Disability and Health (ICF) within the following broad categories: The built environment is defined within the features and characteristics of the surroundings in which people living with long-term neurological conditions engage in meaningful occupations. This will differ for each individual depending on their roles and occupations. The ability to successfully interact with the environment is determined by individual attitude and skills and not at an impairment level such as low vision or difficulty bending (Stark et al., 2015). Understanding and describing the range of environmental factors that impact on occupational performance is difficult given the vast number of environments and different features associated with each (Stark et al., 2015). Occupational therapists employ a range of strategies to facilitate positive interaction with the environment including the following (Stucki et al., 2007): Environmental adaptations refer to strategies that modify the physical environment with the goal of supporting and enhancing everyday competencies of people experiencing physical or cognitive problems due to long-term neurological conditions (Gitlin, 2015). There are three basic forms of environmental adaptations as follows: Assistive technology (AT) includes ‘any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customised, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities’ (US Government Printing Office, 2004). An assistive device can be attached to the home structure, for example wall-mounted grab-rail; applied to the person, for example a splint; or directly manipulated by a person, such as an electronic eating device (Gitlin, 2015). Assistive technology is also referred to as ‘special equipment’ or ‘assistive devices’ and reflects a wide range of equipment and device choices of varying complexity and costs (Gitlin, 2015). Assistive technology can support participation by compensating for loss of function or enhancing residual skills and is classified in many different ways according to function, availability and specification (Polgar, 2015). Person-centred assessment practice is fundamental to the correct provision of assistive devices. This should be within the context of maintaining or promoting independence and should balance risk with the need to maximise functional potential and avoid over-provision (Scottish Government, 2009). It is essential that there is an individual outcomes-focussed approach to the assessment with clear goals identified, agreed, recorded and reviewed, with the provision of equipment seen as a ‘means to an end’ rather than being ‘an end in itself’ (Scottish Government, 2009). Carers are also entitled to an assessment in their own right (Scottish Government, 2009). Where equipment provided will be used by carers, then the occupational therapist should complete a full assessment of need which encompasses an appropriate risk assessment. Assistive devices can support a range of needs and facilitate interventions including the following: The term ‘standard equipment’ refers to ‘equipment that can be used to meet simple to non-complex needs and which does not need to be adapted for the person living with a long-term neurological condition, such as shower chairs, raised toilet seats, bathing equipment, flashing doorbells and standard wheelchairs’ (Scottish Government, 2009). ‘Specialist equipment’ may ‘require a more extensive and specialised assessment and is bespoke, uniquely specified and sourced for an individual (e.g. communication equipment, specially designed seating or wheelchairs)’ (Scottish Government, 2009). On completion of the assessment, the statutory context for the actual provision of equipment to meet the health or social care needs of the person living with a long-term neurological condition is determined by various legislative policies and localised procedures (Social Care Institute for Excellence, 2013). Provision of equipment may be determined by budgetary constraints and local eligibility criteria. If the person living with a long-term neurological condition is deemed eligible for support, the equipment is usually provided on a loan basis through a local equipment store (Social Care Institute for Excellence, 2013). In England and Wales, under the Voluntary Retail Model, people who meet local eligibility criteria are offered a prescription (following an assessment) for a particular piece of equipment which can be exchanged at any accredited retailer in the their area or elsewhere (Consumer Focus, 2010). The equipment belongs to the client who is likely to be responsible for its maintenance (Social Care Institute for Excellence, 2013). It is also possible for people living with a long-term neurological condition to self-fund by purchasing assistive devices from specialist shops, via the Internet and mail order and, increasingly from some generalist retailers and charities (Social Care Institute for Excellence, 2013). Occupational therapists that assess and order assistive devices are responsible for demonstrating the correct use of equipment and satisfying themselves as part of the assessment process that the equipment meets the assessed needs and the individual and carer(s) are safe in its use (Scottish Government, 2009). VAT legislation provides some relief for people with disabilities. There is no blanket exemption from VAT, and it is intended to apply to goods purchased which are designed solely for their use as a consequence of the disability. The following goods may qualify for VAT relief (HM Revenue and Customs, 2014): A suitable, well-adapted home can be the defining factor in enabling the person living with a long-term neurological condition to live well and improve their quality of life (Scottish Government, 2009). Interventions should always be person-centred, and the occupational therapist should begin the process by understanding the experiences of the person living with a long-term neurological condition and helping to identify an individualised solution rather than proposing standardised approaches (Scottish Government, 2009). The provision of adaptations can reduce risk and injury, enabling carers to work safely and effectively and may prevent unnecessary admission to hospital, (Scottish Government, 2009). Minor Adaptations are ‘relatively inexpensive and may be fitted relatively easily and quickly such as grab-rails, handrails, flashing doorbells and smoke alarm alerts’ (College of Occupational Therapists, 2006). Minor adaptations can be classified within the categories outlined in Table 8.1 (College of Occupational Therapists, 2006). Table 8.1 Minor adaptations included in the guide. Source: College of Occupational Therapists 2006, table 2.1, p. 7. Reproduced with permission of College of Occupational Therapists. Major adaptations involve ‘extensive structural alterations or other permanent changes to a house, but excluding work to extend a structure to create additional living accommodation, or work to create living accommodation in a separate building from the current living accommodation’ (Scottish Government, 2009). Major adaptations include the following (Scottish Government, 2009): Occupational therapists are responsible for the following (Home Adaptations Consortium, 2013): The purpose of an adaptation is to modify the home environment in order to restore or enable independent living, privacy, confidence and dignity for individuals and their families (Home Adaptations Consortium, 2013). The focus is therefore on identifying and implementing an individualised solution to enable a person living within a disabling home environment to use their home more effectively rather than on the physical adaptation itself. It is important to take cognisance of where both the individual and their family are in the process of coming to terms with the condition and its potential progress, whilst taking into account the need to ‘future proof’ the home to take account of the likely course of the condition (Home Adaptations Consortium, 2013). The appropriateness and acceptability of the adaptation outcome should be measured by the extent to which it meets the needs identified by the person living with a long-term neurological condition sensitively, efficiently and cost-effectively (Home Adaptations Consortium, 2013). The assessment process should be delivered sensitively, it is important to balance the benefits of any proposed adaptation to the potential levels of upheaval and timescales involved with some types of adaptations with the stage of the disease (Home Adaptations Consortium, 2013). Consideration should be given to expedite procedures and interim solutions where some measure of delay is inevitable (Home Adaptations Consortium, 2013). Where it is likely that the adaptation will provide benefit for a limited period of time, for example for someone living with motor neurone disease (MND), this should not be automatically regarded as a sufficient reason for delaying or withholding its provision (Scottish Government, 2009). Good clinical practice involves the following (Scottish Government, 2009): Throughout our everyday lives we continually interpret and respond to stimuli within the environment which allows us to adjust our position and movements in response. Information regarding orientation and movement of the head, body and limbs in space is conveyed through highly integrated visual and somatosensory systems which contribute to control of balance and equilibrium (Mew and Winnall, 2010). In order to be stable enough to resist the forces of gravity but flexible enough to allow successful execution of efficient movement, normal postural control works to: When normal posture is compromised, balancing against the influence of gravity takes precedence over all other activities. This compromise can lead to stereotypical postures such as side flexion impacting on head position during eating or when attempting to communicate. Impaired balance mechanisms can also lead to the use of both lower and upper limbs to gain stability, severely limiting the use of upper limbs for occupational performance (Pope, 2007a; Raine et al., 2009). Figure 8.1 illustrates a typical clinical reasoning hierarchy that occupational therapists should consider when supporting people living with progressive neurological disease to ensure optimum engagement with the environment. Bearing in mind the fluctuating and often unpredictable course of some neurological conditions, therapists should aim to achieve lower levels of the hierarchy before addressing higher levels in order to guarantee the safety and comfort of their clients. People living with long-term neurological conditions who are unable to move through a full active range of movement, for example due to spasticity, rigidity, weakness or cognitive decline are vulnerable to developing contractures. A contracture is defined as the restriction of range of motion about a joint to such an extent that it causes limitations in activities of daily living, pain or skin breakdown. Research suggests that once established contracture is difficult and very time consuming to correct (Kilbride, 2015). Eventually prolonged mechanical deformation of skeletal arrangement and/or immobility of joints and muscles can result in well-established intractable deformation of skeletal arrangement, for example scoliosis or hip and knee flexion contractures. Secondary complications due to biomechanical changes associated with immobility can be avoided if correct management strategies are used throughout a 24-hour period. The main aim in sitting is to promote the correct posture and body alignment through the provision of adequate support. Figure 8.2 illustrates a step-by-step guide to building a stable seated posture. The impact of tonal changes can make maintaining an upright position against gravity difficult in sitting if suitable back, head and neck support is not available. The backrest of any form of seating must accommodate the shape of the spine; otherwise, head and neck control may be compromised (Rolfe, 2013). A forward flexed head can lead to the development of a kyphosis (Rolfe, 2013) and can contribute to difficulties with respiratory function, communication and swallowing. There are a wide range of commercially available collars which can be considered; however, it is important to bear in mind that they have been designed primarily for immobilisation following neck trauma making them less suitable for people living with long-term neurological conditions (Alton et al., 2014). Immobilisation of the neck can make it difficult for people living with a long-term neurological condition to open their mouth, to be able to speak, eat and drink (Alton et al., 2014). Different types of collars may be required for different activities, for example the type of collar required for supporting the head while travelling in the car may be different to the type of collar used to support the neck during eating and drinking. Collars should be used in conjunction with other postural management equipment and techniques to ensure the correct combination for the person living with a long-term neurological condition (Alton et al., 2014). Tilt-in-space chairs, wheelchairs or shower chairs, which include a mechanism that tilts the whole seat backwards, off-load the effects of gravity and provide support for the back and neck (Alton et al., 2014). Riser/recliner chairs with the tilt-in-space facility may provide appropriate postural support while reducing fatigue and improving general mobility (Rolfe, 2013). Riser/recliner chairs can also provide a safe and comfortable alternative to bed for people who tend to sleep during the daytime in addition to assisting people living with a long-term neurological condition who find it difficult to move from sitting to standing (Rolfe, 2013). The occupational therapist should however remain aware that by tilting equipment this may cause the person to become disoriented within their environment and may limit their communication (Huntington’s Disease Association, 2012). Making the decision to use a wheelchair can be quite significant for many people living with a long-term neurological condition with anecdotal evidence indicating that this can represent a key milestone in disease progression. The occupational therapist should however facilitate discussions in relation to occupational performance encouraging the person living with a long-term neurological condition to view the wheelchair as a mechanism for supporting engagement and participation. This may require a phased approach starting with the use of a manual wheelchair which can be stored within the boot of the car. The wheelchair can then be gradually introduced into the person’s lifestyle as required. The use of practical examples of how the use of a wheelchair can support participation should be individualised by the occupational therapist who should also support the psychological adjustment to wheelchair use. Manual wheelchairs are used to accommodate the needs of people who are beginning to experience mobility problems. Manual wheelchairs can be propelled by an attendant, or if there is sufficient upper limb movement and strength, by the person living with the long-term neurological condition. Manual wheelchairs can be adapted to provide more postural support as changes occur and when a powered wheelchair is neither wanted nor appropriate to clinical need (Rolfe, 2013). A highly supportive manual wheelchair will be larger than a standard wheelchair and will not fold easily into a car boot, especially if it includes a tilt-in-space mechanism (Eldridge et al., 2015). Powered wheelchairs provide the person living with a long-term neurological condition with more independence for their own mobility if they are unable to self-propel a manual wheelchair (Eldridge et al., 2015). Powered wheelchairs can be operated by a range of input devices from a joystick controller to mouth controls. Assessment for a powered wheelchair is more complex and generally requires input from a wheelchair therapist or rehabilitation engineer (Eldridge et al., 2015). Powered wheelchairs can be adapted to include tilt-in-space mechanism, riser function and additional postural support as the needs of the person living with a long-term neurological condition change. Statutory provision of powered wheelchairs will be determined by eligibility criteria and budgetary constraints and additional funding may be required for some adaptations. Powered chairs can be used for indoor/outdoor use although the additional weight of the wheelchair, motor and battery can make it difficult to lift a powered wheelchair into the boot of the car (Eldridge et al., 2015). Overnight positioning has become an increasing concern for occupational therapists as attempts to manage postural deficits during waking hours can be readily undone overnight (Goldsmith, 2000). Pillows and rolled-up towels can provide an effective means of increasing the individuals’ acceptance of their base in lying and maintaining a more symmetrical alignment of body segments. The use of positioning aids such as electrically profiling beds, T-rolls and wedges can promote more equal loading of the tissues and improve alignment of body segments (Thornton and Kilbride, 2004). There are an increasing number of specially designed sleep systems on the market for clients who have very complex postural needs (Pope, 2007b). Sleep Systems are commercially available customised supportive mattresses which are used to maintain good posture when lying supine or on the side. Sleep systems however can be expensive to purchase, and it is recommended that a simpler means of night-time support such as the use of rolls and wedges is trialled before purchasing a more sophisticated system. People living with long-term neurological conditions may find that moving in bed becomes more difficult as their condition progresses. This can lead to increased risk of pressure sores particularly around the scapula and sacral areas. Loss of bed mobility can lead to feelings of discomfort and anxieties about being trapped, particularly if accompanied by impoverished or compromised respiratory function (Rolfe, 2013). Provision of bedrails can facilitate turning and rising from the bed although it is important to ensure that the rail is fitted at shoulder level of the bed occupant to provide a comfortable grip (Aragon and Kings, 2010). Low-friction sheets and slide sheets can also help ease turning in bed. Some people may prefer to wear satin night-wear to support bed mobility, but this should not be used in conjunction with low-friction sheets as it may contribute to increased risk of sliding out of bed (Aragon and Kings, 2010). In many long-term neurological conditions, particularly MND, respiration may become impoverished as the condition progresses. The person living with a long-term condition will then require head support while lying in bed as they will no longer be able to lie flat. A mattress elevator or a profiling bed (see Figure 8.3) may be required to support the person to maintain this position. If non-invasive ventilation (NIV) is required, the person living with the long-term neurological condition will be required to sleep on their back with the head raised and the shoulders supported. Any equipment which is utilised should facilitate an elevated position from the hips and not the abdomen as this can further reduce respiration. Positioning to increase hip flexion will also assist to make the overall position more comfortable for the person living with a long-term neurological condition and where necessary will prevent sliding (Rolfe, 2013). Splinting is an intervention used to support people living with a long-term neurological condition as part of a wider rehabilitation package. Splinting is used to maintain muscle length in the prevention and correction of contracture (Kilbride, 2015) and for improved comfort, pain relief, hygiene and sensory feedback. Splinting can also be used to improve function, for example typing, eating and writing. There are two main types of splints: static and dynamic. Static splints are used to prevent movement, maintaining the forearm and hand in a functional position. Dynamic splints attempt to promote joint mobility and substitute absent muscle power through the use of controlled directional forces. Splints can be custom-made from thermoplastic materials or purchased as off-the-shelf ready-made splints. The different types of splints have both advantages and disadvantages which need to be taken into consideration in the accurate assessment of the person living with a long-term neurological condition. Key benefits of ready-made splints are that they are immediately available for use and do not rely on more specialist skills of the occupational therapist. Ready-made splints tend to be more comfortably padded and generally offer replacement covers to assist with hygiene. Custom-made splints have the benefit of being made specifically to fit the individual and can be readjusted or remoulded as changes occur. However as it can take up to 2 hours to make a custom-made splint, it may not be possible for the person living with a long-term neurological condition to tolerate this due to problems such as fatigue. The occupational therapist is also required to have completed relevant training to ensure sufficient knowledge and skills in this area to avoid potential harm to the person living with a long-term neurological condition. A thorough, holistic assessment should be undertaken by the occupational therapist before deciding to recommend provision of a splint. Key factors of the assessment should include the following: It is extremely important to educate the person living with a long-term neurological condition to ensure that the splint is worn correctly and therefore achieve the desired outcome. Where possible, written information (or alternative forms) should be provided which includes the following (College of Occupational Therapists, 2010): Electronic assistive technologies (EATs) are integrated within everyday life with online shopping, instant messaging, digital photography and computer games becoming meaningful occupations for people living with long-term neurological conditions (Verdonck and Ryan, 2008). Mainstream technologies such as the Internet, computer software, computer hardware and portable devices including mobile phones, personal digital assistants (PDAs), personal organisers and alarms offer a range of functions that can be empowering for people living with long-term neurological conditions if considered fully by the occupational therapist (Verdonck and Ryan, 2008). EAT is the umbrella term that describes electronic equipment that enables people with a physical disability to live more independently (Cook and Hussey, 2002; NHS England, 2013a). Occupational therapists have used EAT within their practice for many years, but there is a greater emphasis on the role of EAT with more recent innovations such as telehealth, telemedicine, smart housing and home automation (Verdonck et al., 2011). High technology devices can be grouped together as EAT which is defined as ‘a subset of assistive technology which comprises communication devices, environmental control systems, personal computers and the interface which permit their integration with information technology and with wheelchair control systems’ (Royal College of Physicians, 2000). Occupational therapists are actively involved in the assessment and prescription, as well as the supply and maintenance of electronic assistive technologies (Verdonck et al., 2011). Yet challenges exist in maintaining a person-centred focus, limiting abandonment of technology and keeping up to date with emerging products while adhering to funding restrictions and organisational procedures (Cook and Polgar, 2008; Galvin and Donnell, 2002). The benefits of EATs are reported to include positive perception of self-esteem, increased competence, increased adaptability and self-worth, decreased levels of frustration, decreased personal assistance time, improved quality of life, time alone and changed relationships (Verdonck et al., 2011). Electronic assistive devices can also support cognitive abilities by helping to manage daily lives, plan the day or week, remember appointments, keep contact information organised and keep track of notes (de Joode et al., 2010). People with cognitive deficits such as memory, planning, attention and motivational problems may also benefit from this type of support (de Joode et al., 2010). Telehealth is defined as a service that ‘uses equipment to monitor people’s health in their own home…[monitoring] vital signs such as blood pressure, blood oxygen levels or weight’ (Department of Health, 2009). People use the equipment within their own homes, and in some cases outside the home, to measure the vital signs that would normally be measured by a healthcare professional, helping to reduce frequent visits to the GP surgery. Telehealth is believed to contribute to a reduction in the number of unplanned hospital admissions by supporting self-management, particularly of long-term conditions. Data from the recording systems is transmitted automatically via broadband or a dial-up telephone line to a monitoring centre or healthcare professional. Readings that indicate changes outside the normal parameters which may indicate deterioration in health are then flagged for action (Davies and Newman, 2011). Telehealth might be used for people living with long-term neurological conditions to monitor respiratory function, cardiac function, blood pressure, blood sugar levels or weight. Telecare is defined as a service that uses ‘a combination of alarms, sensors and other equipment to help people live independently. This is done by monitoring activity changes over time and will raise a call for help in emergency situations, such as a fall, fire or a flood’ (Department of Health, 2009). Telecare therefore combines monitoring equipment with a monitoring service, and is most frequently used in the home. For those users with passive monitoring equipment, their behaviour patterns are monitored, and changes outside of their normal behavioural parameters are flagged for action (e.g. not getting out of bed at the usual time, exiting the house at night). This monitoring is intended to support people and enable them to continue living in their own home, independently or with the assistance of carers, for as long as possible (Davies and Newman, 2011). Environmental control systems have been used for many years by people living with long-term neurological conditions to support them to live independently and perform activities within their own homes without assistance from others (Brandt et al., 2011). Through the use of an input device such as a switch or voice-controlled device, it is possible for people with physical impairment to control electronic equipment remotely, for example open and close doors and windows, utilise entertainment systems, telephones, alarms and computers with the aim of promoting autonomy and control of their lives (Brandt et al., 2011). Figure 8.4 provides a graphic representation of an environmental control system. More recent developments have seen the introduction of smart home technology which offers comparable but extended functionalities such as monitoring and automated functions, for example heating, roof windows automatically closing in the event of rain and lights automatically turning on when the person living with a long-term neurological condition gets out of bed (Brandt et al., 2011). A smart house is ‘a house that has highly advanced automatic systems for lighting, temperature control, multi-media, security, window and door operations and many other functions’ (Brandt et al., 2011). For many people living with a long-term neurological condition accessing a standard computer key board can become more challenging as their condition progresses due to impairments such as tremor, weakness, spasticity or altered sensation. Some inexpensive low tech solutions are available, for example a stylus, wrist supports and larger sized keys. Some standard operating systems such as Windows7® have an inbuilt accessibility feature which can alter the speed and pressure required to depress the keys which can be particularly helpful for people experiencing tremor. An onscreen keyboard can also be created for use in conjunction with a trackball mouse or head mouse. Tablet devices may provide a lighter and easier means of accessing the Internet and other computer applications. Speech recognition software has become a standard application with Windows7® although external applications, for example Dragon Naturally Speaking® may provide a suitable alternative for some. Most speech recognition systems take time for the user to learn and require a consistency in speech production. This may not be a suitable option for people experiencing difficulties with dysarthria. More specialist input devices may be required to operate computer systems, communication systems and environmental controls. A range of devices are available which allow control of the computer mouse by mouth piece, head control, foot pedal or switch or eye movements through the use of eye gaze control systems. Augmentative and alternative communication include a range of methods of communication which can be used to add to the more usual methods of speech and writing when these are impaired and can be a way to help someone understand, as well as a means of expression (Scottish Government, 2009). This might include unaided systems such as signing and gesture (sometimes referred to as linguistic communication), as well as aided techniques ranging from picture charts to the most sophisticated computer technology currently available. There are a range of computer programmes now available that can combine environmental control access with computer access and communication using eye gaze systems or switch control. This reduces the need for multiple input devices which can be tiring and difficult to manage. These can be programmed through a small tablet with a 10-inch screen which can be mounted on a wheelchair, or a larger monitor on a floor stand on wheels that can be positioned in front of a chair or over a bed. The occupational therapist should refer to the speech and language therapist for a more detailed specialist assessment for communication needs (NHS England, 2013b).
Using technology to support participation
8.1 Introduction
8.2 Environmental characteristics and occupational performance
8.3 Environmental adaptations
8.4 Assistive technology
8.5 Assistive devices
8.5.1 Provision following assessment
8.5.2 VAT exemption
8.6 Housing adaptations
8.6.1 Minor adaptations
1. Visual impairment needs
Staircase applications
External lighting
2. Hearing impairment needs
Flashing doorbells
Smoke alarm alerts
3. Rails
Main entrance support rail
Grab-rails
Newel rails
Handrails
Stair handrails
4. Access
Internal door threshold ramps
Improved access and widened pathway to main entrances
Door entry intercom
5. Kitchens and bathrooms
Window opening equipment
Kitchen lever taps
Kitchen cupboard handles
Bathroom lever taps
W.C. lever flush handles
Bathroom grab-rails
6. General needs
Door and wall protectors
Alter heights of electric faceplates
7. Safety matters
Safety glass
8. Highways
Drop kerbs
8.6.2 Major adaptations
The role of the occupational therapist in the provision of environmental adaptations
Principles of the assessment
8.7 Seating and postural management
8.7.1 The role of normal posture as a foundation for occupational performance
8.8 Management of posture and positioning in sitting
8.8.1 Posture and head control in sitting
8.8.2 Wheelchairs
8.8.3 Powered wheelchairs
8.9 Management of posture and positioning in lying
8.9.1 Sleep systems
8.9.2 Bed mobility
8.9.3 Respiration
8.10 Splinting
8.10.1 Types of splints
8.10.2 Assessing for a splint
8.10.3 Education and monitoring
8.11 Electronic assistive technology
8.11.1 Telehealth
8.11.2 Telecare
8.11.3 Environmental control systems
8.11.4 Smart housing
8.11.5 Computer access
8.11.6 Switches and input devices
8.11.7 Augmentative and alternative communication