Ulceration and deformity of the extremities, particularly the feet, are important complications of leprosy (known as Hansen’s disease in America). The pathophysiology of leprosy ulcers are similar to those of ulcers in diabetes mellitus – in both cases nerve damage leads to loss of sensation, which in turn leads to repetitive injury and ultimately ulceration. In addition, leprosy causes deformities, which increase the risk of repeated trauma and hence ulceration. Leprosy is a disease that affects the poorest of the poor; frequently those living in remote areas. The disease is highly stigmatising in the communities among whom it occurs leading to late presentation at healthcare facilities and hence a high incidence of ulceration among people who have contracted the disease. Once a person has had one ulcer, repeated ulceration is common, affecting at least 30% of patients.
NIHR CLAHRC WM is working with The Leprosy Mission to develop interventions to prevent ulceration among high risk leprosy patients – especially those who have had previous ulcers. To this effect, we participated in a stakeholder meeting organised by colleagues Drs Deanna Hagge and Indra Napit at the Anandaban Hospital in Kathmandu, Nepal on 14 December 2018.
©Paramjit Gill, 2018. Photo taken with permission of participants.
Stakeholders included leprosy-affected people, ulcer patients, administrative and clinical staff, representatives working on behalf of leprosy affected people, and two government officials. Stakeholders were asked to speak not only about barriers to prevention of ulcers but also possible means to overcome these barriers. All voices were heard and the meeting lasted for about two-hours.
First, we report themes relating to barriers to prevention that emerged during the stakeholder meeting. Second, we arrange them according to the well-known COM-B model  encompassing Capability, Opportunity and Motivation as factors affecting Behaviour. Finally, we consider what may be done to overcome the barriers.
The following themes emerged during the consultation:
- Poverty. All were agreed that the need to work to provide the essentials of life increased the risk of placing pressure on vulnerable foot surfaces and of repeated trauma. Pressure to provide for self and family also increased the risk of late presentation of ulcers or their prodromal signs (so-called ‘hotspots’). One stakeholder commented “If a person cannot work for three months due to wound healing and not putting pressure on the ulcer then how do they live?”
- There was almost unanimous agreement that stigma was a problem, as it led to ‘denial’ (and hence late presentation) and failure to practice self-care and wear protective footwear, which might mark the wearer as a leprosy victim. The view was expressed that stigma reaches its highest intensity in remote rural locations – “some family members don’t know the person has leprosy so question self-care habits such as soaking the hands and feet…in rural areas patients need to hide the wounds and clean them in the night time so nobody sees.”
- Poor information provision. Arguments regarding this barrier were more nuanced. While acknowledging that communication, especially communication pending discharge, was seldom perfect, there was also a feeling that staff tried hard and made a reasonable fist of communicating the essentials of preventative self-care. One stakeholder commented that “leprosy workers are not successful in convincing patients that their body is their responsibility and they have to look after it”. However, convincing patients can be hard, as many people afflicted with leprosy have poor functional literacy. Bridging the gulf in cultural assumptions between care givers and service users may be difficult in a single hospital stay – a point we pursue below.
Analysis according to the ‘trans-theoretical’, COM-B model
We have arranged the above themes using the COM-B model in the Figure. This figure is used to inform the design of interventions that address multiple barriers to healthy behaviours.
(With thanks to Dr Laura Kudrna for her advice).
Designing acceptable interventions
Principles not prescriptions
Interventions to improve care are like guidelines or recipes, not prescriptions. They should not be applied in a one size fits all manner – local implementers should always adapt to context  – an intervention as promulgated is not identical to the intervention implemented. Thus, an intervention description at the international level must leave plenty of scope for adaptation of principles to local circumstances that vary within and between countries. For example, peer groups may be more feasible in high than in low burden settings while the development of local health services may determine the extent to which ‘horizontal’ integration between specialist leprosy and general services is possible.
Starting with Capability, there was a feeling that this was not where the main problem lay; patients generally left hospital with the equipment and knowledge that they needed to prepare for life in the community. Our stakeholders said that patients had access to protective footwear (although innovations, such as three dimensional printing to adapt footwear to particular types of defect, would be welcome). Likewise, as stated above, gains to be achieved by an ‘enhanced discharge’ process might be limited. This is for three reasons. First, patients usually receive rather thorough counselling in how to care for themselves during their hospital stay. Second, they usually know the measures to take. Third, understanding is seldom sufficient to bring about behaviour change – school girls who become pregnant are seldom unaware of contraception, for example. In conclusion, a hospital based intervention might not be the most propitious use of scarce resources. This, of course, does not preclude ongoing facility based research to improve treatment and protective methods, nor does it preclude facility outreach activities as we now discuss.
The main barrier identified at the stakeholder meeting seemed to lie in the area of opportunity. Two important principles were established in the meeting. First, since ulcer prevention is an ongoing process its centre of gravity must be located where people live, that is, in the community. Second, peer-supported self-care is a model of established success in leprosy  (as it has been in diabetes). Two corollaries flow from these considerations. First, where peer support has not been established, this deficiency should be corrected with support from facility based leprosy services. This may take different forms in high burden areas, where groups of people can come together, compared to low burden settings. This suggests that m-health, especially m-consulting, would be particularly useful in low burden settings. Second, where peer support exists (in the form of self-care groups) it should be strengthened, again with support from local facilities who can provide know-how, materials and, we think, inspiration/leadership for ongoing strengthening of locality based support groups. Such support, it was argued, not only provides technical know-how, but importantly, psychological support, to foster resilience and mitigate the pernicious effects of stigma. Telecommunication, when available, will have an important role in coordinating and supporting community self-care. We heard stories of people having to travel for three days to reach a facility; of having to find their way back to remote rural locations with recently healed ulcers on deformed feet and having to complete their journeys on foot. There is a prima facie case that providing mobile telephones will be cost-effective (save in locations so remote they fall outside mobile phone coverage). There was considerable support in the stakeholder meeting for personalised care plans. While accepting the need to individualise, an individual’s needs are not stable. Thus, while specific plans should be made at discharge, it is in the community that adaptations must be made according to changing clinical circumstances, work requirements and personal preferences. In all of the above initiatives, the specialist leprosy services should act as a source of information and psychological/emotional support. Especially in low burden areas, they can act like a poisons facility poisons reference service, providing know how to patients and care providers as and when necessary.
As per the legend to our figure, we think that promoting opportunity and motivation go hand in hand in the case of community and outreach services for patients with leprosy who are at risk of ulcers as a result of local anaesthesia and limb deformities. Stigma aggravates the practical and psychological effects of the disease and includes a loss of self-worth and ‘self-stigma’. People with leprosy often have something akin to a ‘crushed spirit’ or ‘chronic depression’ depending on the label one wants to use. Peer supported, facility enabled, self-care may improve motivation. Moreover, emotional support may enable people who have the stigmata left over from active infection to become ambassadors for the condition and help reduce social stigma.
It is not enough to say that people suffering the stigma of leprosy should integrate with their communities rather than live in institutions or ‘colonies’, without taking steps to enable them to live in those communities. Such steps are of two types:
- Community level action in supporting /facilitating communities to replace stigma by embracing people with leprosy and actively supporting them.
- Individual support for people with leprosy who are likely to encounter stigma, but who need to prevail in the face of discrimination.
Interventions need to be achievable at low unit cost. So the plan is to design an intervention for propagation across many health systems and to evaluate how it is assimilated locally and what effects it has, within and across multiple contexts. The intervention we propose will involve facility outreach to educate people and ‘teach the teachers’ in communities with the aim of enhancing self-care. There are other actions that might be taken to support people with leprosy (and for that matter other people with disabilities) in the community. One set of measures are those that may alleviate the grinding poverty that many people with leprosy suffer, for instance by providing small loans, non-conditional cash transfers and enterprise coaching. Such interventions, targeting the poorest of the poor have been evaluated and some have proven effective. They may be applicable to people who bear the effects of leprosy and we would be keen to join in the evaluation of such interventions. Information technology would seem to have a large role, as stated above. Diplomatic overtures to opinion formers, such as community leaders, may reduce stigma, especially if people who suffer from ulcers are themselves empowered to advocate on behalf of fellow sufferers. It may be the case that improving care for leprosy sufferers will have spill-over effects on other people with ulcer conditions or physical disabilities. The CLAHRC WM Director would like to thank Drs Indra Napit and Deanna Hagge for organising an excellent meeting, and the attendees for giving their time and sharing their experiences.
–Prof Richard Lilford, Dr Indra Napit and Ms Jo Sartori
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