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.

Assessment of needs and quality care issues of women with leprosy.

OBJECTIVES: Leprosy causes not just physical but psychosocial and economic problems which are further magnified in women due to gender disadvantages especially in developing countries. In order to determine the needs and quality care issues of women leprosy patients attending a hospital/health care facility, a research project was done. DESIGN: All women leprosy patients attending a Leprosy Referral Hospital in Kolkata, India during 2006 were interviewed in depth and clinically assessed, using a standardised proforma. FINDINGS: Of 104 women studied, half below 40 years of age and 70% above 40 years, had visible disability, and some had diabetes, low back pain etc. Nearly 60% preferred to hide their disease but even so, some had social problems. Most women delayed going to hospital, until their husband/guardian felt it was necessary. They had to complete their household chores before setting out for the hospital, and after their return. A considerable amount of time was spent waiting at various service points which conflicted with their domestic work, and lowered their social worth if they were away too long. This de-motivated them from visiting hospitals, even for follow up visits. Medical advice given--such as avoiding prolonged walking and standing, working with hot utensils etc., was not practical. CONCLUSION: Hospitals can do much to address the needs of women leprosy patients and. provide quality services. National programmes should give a higher priority to offering culturally acceptable health education to promote early reporting.