Enhancing counselling strategies for leprosy patients through the Participation Scale

BACKGROUND & OBJECTIVES: Counsellors provide psychological support, appropriate education and coping skills to persons affected by adverse events. Counselling of leprosy patients is essential to enable them to cope with perceived stigma as well as managing severe enacted stigma at home, place of work or elsewhere. Professional counselling was instituted at the Leprosy Mission Community Hospital in Naini, Allahabad District, India, in 2004. In this paper we describe how the use of the Participation Scale helped in developing Counselling strategies for a variety of leprosy patients. MATERIAL & METHODS: A random sample of 250 leprosy patients visiting the hospital for the first time during 2011-2012 were chosen, 50 each from those with only hidden patches (Grade 0a), patients with visible patches (Grade 0b), those with only anaesthesia or weakness (Grade I), patients with paralytic deformities (Grade 2a), and patients with visible disabilities and ulcers Grade 2b). The P-scale consisting of 18 items was administered in the local language (Hindi) and used by the Counsellor along with relevant clinical and socioeconomic details. RESULTS: There were 84 women and 166 men, distributed in all the five categories. Overall, 142 patients out of 250 (56.8%) had no participation restrictions; 39 (15.6%) had mild social restrictions; 20 (8.0%) had moderate, 28 (11.2%) had severe and 21 (84%) had extreme participation restrictions. Paradoxically, there were some cases without severe deformity who are also subjected to restrictions. Patients in Grades 0a and 0b, had practically no severe or even moderate restrictions in their social participation, but their perceived stigma was high, requiring suitable leprosy education, family counselling and coping skills to feel confident that they were capable of normal work like any of their peers. Counselling became more intensive in Grade 1 and for almost all in Grade 2, who experienced moderate to severe restrictions in meeting new people, participating in social activities and indulging in socioeconomic activities. Counselling for such groups of patients required multiple approaches, including in-depth leprosy education for regular treatment, self-care measures, mobilisation of coping skills, self-confidence and acceptance counselling, and follow-up counselling for thos released from treatment after multidrug therapy. CONCLUSIONS & RECOMMENDATIONS: The P-scale provides essential information to enable a Counsellor to offer more meaningful and balanced counselling to leprosy-affected people, especially in coping with enacted stigma. Education oriented counselling and psychological supportive counselling are necessary adjuncts for clinical care and treatment. Client-oriented counselling allows clients to freely express their fears and anxieties, and promotes coping skills and confidence.