Organizing and managing a programme for self-care in leprosy

Peripheral neuropathy is a common complication of leprosy that can lead to a wide range of impairments, including chronic skin ulcers and corneal injury. As a result, people with neuropathy need to practise long-term self-care routines to care for their eyes, heal ulcers and prevent further injury. As stated in a previous article in this series, the World Health Organization (WHO) defines self-care as ‘the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health-care provider’. Self-care in leprosy is a set of practices by persons affected by leprosy which equips them with the knowledge and motivation that they need to take care of themselves and to prevent impairments. People practising self-care need access to self-care kits, assistive devices (such as crutches) and protective footwear. They need access to medical services for conditions that will not heal or when surgery or prosthetics are required. They also need support from families and the broader community so that work requirements do not lead to excessive weight-bearing, hence ulcers that do not heal or that recur. Individuals who practise self-care are often supported by peers in self-care groups (Ilozumba and Lilford), or by family members. Here we set the scene by describing the systems level or organisational principles that are necessary, albeit not sufficient, conditions for the promotion of effective and acceptable self-care. In the next article, we will describe the psychological principles that need to be considered in promoting self-care. Then, building on organising principles and psychological theory, the processes of self-care will be described by Dr. Joydeepa Darlong.