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This is the published version of a paper published in Leprosy Review.
Citation for the original published paper (version of record):
Borg, J., Larsson, S. (2009)
Assistive devices for people affected by leprosy: Underutilised facilitators of functioning?
Leprosy Review, 80(1): 13-21
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Assistive devices for people affected by leprosy:
Underutilised facilitators of functioning?
J O H A N BO R G & S T I G L AR S S O N
Division of Social Medicine and Global Health, Department of Health Sciences, Lund University, Sweden
Accepted for publication 05 September 2008
Summary
Objectives People affected by leprosy and their families face social and economic problems. The focus of interventions is often on prevention of disabilities and socio- economic rehabilitation. The objective of this study was to explore to what extent the potential of assistive devices to facilitate activities and participation of people affected by leprosy has been utilised.
Design Published literature was reviewed and the findings analysed.
Results Considerable attention has been given to the protecting role of assistive devices. The focus of assistive devices facilitating functioning has been on mobility aspects of self-care and domestic life.
Conclusions The findings indicate that the potential of assistive devices to facilitate activities and participation in life areas such as work and employment is still waiting to be utilised on a broad scale.
Introduction
According to Srinivasan,
1about one third of people affected by leprosy and their families face social, economic or combined social and economic problems, dehabilitation or destitution. For people with chronic impairments due to leprosy, a common problem is experiencing severe difficulties with the normal activities of daily life.
2We may ask what role assistive devices (also known as technical aids and assistive products) can play to contribute to solutions of the problems people affected by leprosy face?
In the ‘Standard Rules on the Equalization of Opportunities for Persons with Disabilities’, States are given the responsibility to ensure the development and supply of assistive devices for people with disabilities with an objective of assisting them ‘to increase their level of independence in their daily living and to exercise their rights’.
3This responsibility goes further in the ‘Convention on the Rights of Persons with Disabilities’ (CRPD), where states are to promote not only the availability of assistive devices but also their use. Priority should be given to technologies at an affordable cost.
4Correspondence to: Johan Borg, Nygatan 6, SE-79531 Rattvik, Sweden (e-mail: johan.borg@med.lu.se)
0305-7518/09/064053+09 $1.00 qLepra
13
Functioning and disability are two key concepts in the ‘International Classification of Functioning, Disability and Health’ (ICF).
5Disability is used as an umbrella term for impairments, activity limitations and participation restrictions, while functioning is used as an umbrella term for functional and structural integrity of the body, and activities and participation. Disability is the outcome of the relationship between an individual’s health condition and personal factors, and of the environment. As opposed to barriers in the environment, assistive devices are considered facilitators. According to ICF society may hinder an individual’s performance when it does not provide facilitators.
5Prevention of disability (POD) is included in the global strategy for leprosy control.
6For decades many leprosy programmes have undertaken interventions to prevent disability.
A suggested definition of POD is ‘a concept comprising all activities at individual, community and programme level aimed at preventing impairments, activity limitations and participation restrictions’.
7Assistive devices can be used to prevent disabilities by protecting the user’s body from new impairments and by facilitating activities and participation (i.e. execution of tasks and involvement in life situations). The use of assistive devices is sometimes associated with stigma.
8 – 10But assistive devices may also have a de-stigmatising effect.
11The global strategy for leprosy control acknowledges that poverty is a root problem causing and aggravating disability to be addressed as an essential part of rehabilitation.
12Socio-economic rehabilitation is a common strategy to improve the situation of people affected by leprosy.
Considering the status of assistive devices in international policy documents, the emphasis on POD in leprosy control strategies and the need to address poverty, this study was initiated with an objective to explore to what extent assistive devices for people affected by leprosy is covered in published literature, particularly with respect to facilitating activities and functioning.
Methods
The study was carried out in four phases:
(1) Reviewing common assistive devices for people affected by leprosy;
(2) Reviewing contents on assistive devices in texts recommended for personnel related to leprosy;
(3) Reviewing activity limitations and participation restrictions of people affected by leprosy; and
(4) Relating the findings in phase 1 to the findings in phase 3 and the findings in phase 2 to the findings in phases 1 and 3.
In the first phase a literature review was carried out. References were collected through searches on PubMed, ELIN at Lund University and Medknow using the keywords ‘leprosy’
combined with ‘assistive products’, ‘assistive technology’, ‘assistive devices’, ‘technical aids’, ‘prostheses’, ‘prosthetics’, ‘orthoses’, ‘orthotics’, ‘footwear’ and ‘grips’. In addition, manual searches on the website archives of Leprosy Review, the International Journal of Leprosy and other Mycobacterial Diseases, and the Asia Pacific Disability Rehabilitation Journal were undertaken and relevant bibliographies were studied for further references.
J. Borg and S. Larsson
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In the second phase the contents of a current list of recommended texts for 11 different target audiences and a book about reconstructive surgery and rehabilitation designed for surgeons and therapists were analysed. In the third phase a literature review was carried out.
References were collected using the same search methods as in phase 1. However, the keywords were ‘leprosy’ combined with ‘disability’, ‘activities’, ‘participation’, ‘stigma’ and
‘socio-economic rehabilitation’. In the forth phase the findings on common assistive devices were related to identified activity limitations and participation restrictions, and the findings on text contents on assistive devices were related to the findings on assistive devices, activity limitations and participation restrictions. The relation between the use of assistive devices and (de-)stigmatisation was not included in the analysis.
Results
A S S I S T I V E D E V I C E S
For the purpose of this review, assistive devices for people affected by leprosy are categorised into two groups: assistive devices used to prevent impairments and secondary deformities, and assistive devices used to facilitate functioning. Some assistive devices fulfil both a preventing and a facilitating role. Identified assistive devices for prevention, i.e. protection of the user’s body, are listed in Table 1.
7,8,13 – 19A consensus development conference on POD concluded that research addressing issues of coverage and access in footwear provision and self-care should be prioritised.
7Assistive devices with a described main purpose of facilitating functioning are listed in Table 2.
7,12,15,17,19 – 23In established leprosy centres the use of certain assistive devices for activities of daily living is quite widespread.
2Herm, Brandsma and Schwarz
15state that there is a wide range of assistive devices ‘available to improve performance of the so called “community survival
Table 1.Assistive devices for protection of eyes, hands and feet
Protection of eyes (e.g. from dust and from dryness by keeping eyes closed)
Protection of hands (e.g. from heat, pressure and splinters and through prevention of deformities)
Protection of feet (e.g. from pressure and through prevention of deformities)
† Eye-glasses † Adaptation of tools † Footwear
† Headcloths † Splints † Orthoses
† Hats and caps † Gloves † Foot drop springs
† Pads, cloths, mosquito nets and bed sheets to cover eyes while sleeping
† Pot holders and cooking gloves † Drop foot support
† Long pipe to blow into fire † Padding around handles (e.g. by cloth or rubber)
† Crutches
† Thick cloth or string around hot handles
† Walking sticks
† Long handles to hold hot things † Cloth wrapped around ankles while sitting on the ground
† Cup holders (e.g. another cup)
† Stick and tongs to poke fire
† Cigarette holders
skills” or activities of daily living when there is a lasting impairment’. They argue that simple devices which improve grip function are, in most cases, sufficient to overcome activity limitations. They also point out the need for seriously considering whether the functional benefit of an operation improves the functional ability more than the use of a simple assistive device.
A summary of the findings on assistive devices include:
. Assistive devices for protection of eyes, hands and feet as well as assistive devices for facilitation of activities and participation are documented. However, assistive devices for protection are described in greater detail.
. More documents related to the facilitating role of assistive devices in foot-related activities were found compared to hand-related activities.
. Assistive devices facilitating hand-related activities are mainly related to activities of daily living. No assistive device for facilitation of hand-related activities was found in documents published by WHO. One such assistive device was found in documents published by ILEP.
. One text was found where assistive devices for income generating activities were described.
. No text on assistive devices for facilitation of eye functions was found.
T E X T S O N A S S I S T I V E D E V I C E S
For 11 medical and non-medical target audiences, including the general public, the ‘ILEP Grid of Essential Texts’ recommends a total of 29 different books or chapters on leprosy and related topics.
23One of the books recommended to cover social aspects for physical and social rehabilitation workers, non-medical programme collaborators and the general public includes assistive devices for protection and assistive devices for facilitation of activities of daily life.
24Another book suggested for the same target audience includes assistive devices but not particularly for people impaired by leprosy.
25To cover the subject of POD the target audience (programme managers, medical specialists, general medical doctors, nurses and other paramedics, primary health care workers and village volunteers, physical and social rehabilitation workers, shoe makers and non-medical programme collaborators) are
Table 2.Assistive devices for facilitation of hand and foot related activities
Facilitation of hand-related activities
Facilitation of foot-related activities
† Grip-aids (e.g. custom made Modulan grip-aids) † Braces
† Foam padding for combs, cutlery and pens to increase contact area and decrease pressure
† Foot drop springs
† Scissors that open automatically † Orthoses
† Cutting boards which keeps things fixed in place † Prostheses
† Wrist cuff/straps with holder for e.g. pen, spoon or tool † Crutches
† Velcro straps on shoes instead of buckles or lace † Wheelchairs
† Cloth-cutter † Sewing machine pedal spring
† Cane holder
† Knife and block combination for slitting hems
J. Borg and S. Larsson
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suggested a guide on prevention of disabilities which includes assistive devices mainly for protection and prevention of impairments.
20Designed for surgeons and therapists, the book Surgical Reconstruction and Rehabilitation in Leprosy and other Neuropathies was published in 2004. Containing 24 chapters and eight appendices, the 400 page book includes a chapter on footwear design and foot orthoses, a chapter on prostheses and orthoses for legs and feet, and a chapter on rehabilitation with nearly half a page of text and four illustrations on the role of assistive devices, and a similar amount of texts and one illustration on orthoses.
17A C T I V I T Y L I M I T A T I O N S A N D P A R T I C I P A T I O N R E S T R I C T I O N S
In an interview survey among 269 people affected by leprosy in the Western Region of Nepal, the difficulties the respondents had in carrying out more than 70 different activities were measured (see appendix A, Table A1).
2About half of the 20 activities with the highest percentage of respondents reporting ‘much difficulty’ or worse are directly related to income generation. It was pointed out that activities of daily life had ‘received surprisingly little attention in overall case management and control programmes’.
2The questionnaire used in the interview survey was developed into an activity scale. Besides covering a reduced number of the activities in the questionnaire – some of them more detailed and some more general – the scale introduced two new activities: recognising people from far away, and seeing small things at a short distance.
26Restrictions in participation can be a result of stigma or the physical effects of leprosy.
Reported areas of restrictions in participation include: people’s dignity, social status, employment opportunities or job security, income generation, family relationships, friendships, mobility, interpersonal relationships, marriage, leisure activities, attendance at social and religious functions, self-esteem, cooking, eating, housework, and sleeping arrangements.
27 – 30To measure the impact of leprosy on social participation, a participation scale covering 18 areas of life has been developed based on restrictions in participation experienced by people affected by leprosy (see appendix A, Table A2).
31Using ICF terminology, people affected by leprosy experience activity limitations and parti- cipation restrictions in the following life areas: mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas, and community, social and civic life.
U S E A N D P O T E N T I A L U S E O F A S S I S T I V E D E V I C E S
Relating the findings about assistive devices to reported activity limitations and participation restrictions leads to the following observations:
. Assistive devices for the protection of eyes, hands and feet are well documented. The effects of using them are related to all life areas.
. Most of the identified assistive devices for facilitation are related to mobility in the areas of self-care and domestic life.
. Although employment and income generation is an area – together with other major life
areas – where people affected by leprosy experience problems, documentation of assistive
devices for facilitation of such activities is very limited. No text addressing assistive device
use and socio-economic rehabilitation was found. To some extent assistive devices for self-
care and domestic life can be used.
. In the remaining life areas – interpersonal interactions, and community, social and civic life – the situation of the use of assistive devices is similar to the situation in the area of employment and income generation.
. All audiences in the ‘ILEP Grid of Essential Texts’ except for the general public are recommended texts on assistive devices for protection. None of the target audiences are recommended texts on assistive devices for facilitation, except for three groups who are recommended books on social aspects, which also include assistive devices for activities of daily life.
The potential of assistive devices to prevent impairments and secondary deformities appears to be relatively well utilised. The potential of assistive devices to facilitate activities and participation seems to be more utilised in the life areas of self-care and domestic life, especially with respect to mobility, and less utilised in other life areas.
Discussion
This study has identified a number of different assistive devices for people affected by leprosy used to prevent impairments and facilitate functioning. Considerably more attention has been given to the preventing role of assistive devices compared to the facilitating role. The focus of assistive devices facilitating functioning has been on mobility aspects of self-care and domestic life. The findings indicate that the potential of assistive devices to facilitate activities and participation in other life areas such as work and employment (including self- employment) is still waiting to be utilised on a broad scale.
To achieve a better utilisation of assistive devices facilitating functioning the devices need to be made available to the users. This may require:
. awareness about assistive devices among personnel working with medical, physical, social and economic rehabilitation of people affected by leprosy,
. training of related professionals and staff on user-involved design and provision of appropriate assistive devices for people affected by leprosy,
. development and integration of assistive device services for people affected by leprosy in existing rehabilitation services to ensure availability and quality, and
. provision of information about assistive devices to people affected by leprosy.
To further the development in this area, a study of factors determining the implementation of provision of assistive devices would be informative. Also, as stigma is one of the causes of participation restrictions among people affected by leprosy, it would be useful to study under what conditions assistive devices can contribute to de-stigmatisation.
With an increasing integration of leprosy-related services into general health, rehabilitation and community services, and a widening of the scope of services for people with leprosy, services for provision of assistive devices might become more accessible to people affected by leprosy. By mainstreaming production of assistive devices for people affected by leprosy, e.g. by integrating their production in other assistive device manufacturing facilities, the benefits of advancements in technology and quality will more likely reach people affected by leprosy.
11J. Borg and S. Larsson
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Acknowledgements
The authors wish to acknowledge the valuable contributions and comments from Friedbert Herm, Wim Brandsma, Chapal Khasnabis and Anna Lindstro¨m. The study was funded through a grant from the Swedish International Development Cooperation Agency (SIDA).
Ethics approval
An ethics approval was not required for this study.
Funding
The study was funded through a grant for doctoral studies from the Swedish International Development Cooperation Agency (SIDA).
Contributors
Johan Borg planned, conducted and reported the work. Guarantor.
Stig Larsson, PhD, supervised the work and reviewed the manuscript.
Friedbert Herm, MD, Sana Kliniken Sommerfeld, read the manuscript and provided literature.
Wim Brandsma, PhD, All Africa Leprosy, Tuberculosis and Rehabilitation Training Centre (ALERT), provided a bibliography.
Chapal Khasnabis, Technical Officer, Disability and Rehabilitation Team, World Health Organization, reviewed the manuscript.
Anna Lindstro¨m, International Officer, the Swedish Handicap Institute, reviewed the manuscript.
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Appendix A
Table A1.Percentage of people affected by leprosy reporting ‘much difficulty’ or worse in carrying out different activities of daily life. Results of an interview survey among 269 people affected by leprosy in the Western Region of Nepal2
Running 34% Helping animal deliver 13% Opening packets 6,3%
Ploughing 32% (Men only) Opening a container 13% Peeling fruit with hand 6,3%
Eating with the hand 13% Using a zip 6,3%
Milking a buffalo/cow 26% Planting (e.g. rice) 12% Putting on shoes/sandals 6,3%
Pouring water 11% Making folds, e.g. saris 6,1%
Threshing 26% Cleaning rice/lentils 11% Opening a tap 6,1%
Shaving 25% (Men only) Washing dishes 11% Sitting (cross legged/squatting) 6,1%
Harvesting 23% Using belt 11% (Men only)
Digging 23% Using a knife 10% Washing hands and face 5,9%
Cutting grass 22% Lifting pots 10% Using an umbrella 5,7%
Cutting nails 22% Lighting fire or stove 9,4% Going to toilet 5,6%
Tying a knot 18% Doing buttons, tying laces 9% Getting up 5,6%
Gathering firewood 17% Kneeling 8,9% Brushing teeth 5,2%
Sowing seed 17% Serving food 8,5% Washing children 4,5%
Watering land 17% Bathing oneself 8,2% Cleaning self after toilet 4,5%
Weeding with the hand 17% Stirring food in a pot 8,1% Changing/cleaning baby 4,3%
Sweeping 7,6% Carrying a bag 4,2%
Weeding with a tool 17% Cutting vegetables 7,5% Eating with a spoon 3,9%
Carrying a basket 16% Soaking/massaging hands/feet 7,5% Feeding child 3,8%
Carrying water pot 16% Walking 7,5% Bootle feeding child 3,4%
Washing clothes 16% Washing feet 7,4% Dressing children 3,4%
Using scissors 16% Pinning things (e.g. sari) 7,4%
(Women only)
Monthly hygiene 2,5% (Women only)
Cutting meat 16% Opening a door 6,7% Carrying children 2,3%
Kneading dough 16% Drinking water 6,3% Putting on a scarf, shawl/patuka 2,3%
Throwing stones 15%
Cleaning animal shed 14%
Heating/boiling water 14%
Grinding spices 13%
Table A2.Areas of life covered by the Participation Scale28
Finding work Visiting outside village/neighbourhood
Working hard Visiting other people in the community
Meeting new people Contributing to household economically
Being active socially Taking part in major festivals and rituals Helping other people Value of one’s opinion in family discussions Taking care of oneself Taking part in casual recreational/social activities Doing household work One’s eating utensils kept in same place as others’ utensils Confident in learning new things Visiting public/common places in the village/neighbourhood Having respect in the community Moving around inside and outside the house and around the
village/neighbourhood
