“If you will counsel properly with love, they will listen”: A qualitative analysis of leprosy affected patients’ educational needs and caregiver perceptions in Nepal

Abstract

BackgroundLeprosy remains a disease of concern in many countries including Nepal. To achieve the target of elimination, the WHO strategy promotes comprehensive education of patients, healthcare workers (HCWs), and the public on leprosy-related issues. However most educational programs are based on the concerns of HCWs and not on patients’ needs. The objective of this paper is to explore the educational needs of leprosy affected patients in Nepal and compare them to the needs perceived by HCWs.Methodology/principal findingsSemi directive interviews were conducted with patients and HCWs. The data was analyzed using the basic interpretative qualitative framework. The study was conducted in two leprosy referral centers, one university hospital and one primary health care center: Lalgadh Leprosy Hospital and Services Centre, Anandaban Hospital and its satellite clinic in Patan, B. P. Koirala Institute of Health Sciences in Dharan, and the Itahari primary health care centre.The results show that there remains a lack of knowledge regarding the disease (origins, manifestations, prevention and treatment) contributing to late care seeking behavior and high levels of stigma, with an important psychological and financial stress for patients. All of the HCWs displayed a good understanding of patients’ difficulties and needs and acknowledged the key role of patient education. However, they expressed several challenges in managing patients due to lack of time, human resources and training in patient education.Conclusions/significanceFurther efforts need to be made to increase patients’ general knowledge of the disease in order to motivate them to seek healthcare earlier and change their perception of the disease to reduce stigma. HCWs need proper training in patient education and counseling for them to acquire the necessary skills required to address the different educational needs of their patients. The use of lay and peer counselors would be an option to address the workload and lack of time expressed by HCWs.

Autocuidado em hanseníase sob a ótica de grupos operativos: uma abordagem qualitativa

“…Mutual support is a characteristic that is also found in a support group for selfcare in leprosy in Nepal, even though individual counseling exists, the participants share experiences and former participants practice preventive self-care measures with the patients. The study shows how this exchange of information between participants of the same origin and with similar experiences is positive when it comes to leprosy (13) .…”

“…Social exclusion in individuals diagnosed with leprosy sometimes becomes heavier than the clinical manifestations of the disease. In addition to social reintegration, the group also favors the participants' transition back to their community; participants in self-care groups demonstrate better control of the disease and of its origins (13) . Feeling part of a group can be a contributing factor to the user's empowerment process in the fight against the disease (14) .…”

Barreras y facilitadores relacionados con el diagnóstico de la lepra en Costa Rica

“…Hallazgos similares han sido descritos en Indonesia y Nepal, en donde se recomienda mejorar la información asociada con la enfermedad, como un prerrequisito esencial, en personas afectadas, familiares, miembros de la comunidad y equipos de salud. 22,23 Personas con información insuficiente o equivocada, podrían tener una percepción de riesgo de enfermedad reducida, constituyéndose en una barrera para el diagnóstico oportuno incluido en el marco conceptual del MCS.…”

“…Según Singh et al, la lepra es poco comprendida y es experimentada como una serie de desórdenes agudos no relacionados unos con otros. [19][20][21][22][23][24][25] El estudio muestra que la mayoría de los participantes se encuentra en edad productiva, son jefes de hogar, con ocupaciones por lo general clasificadas como elementales, según el INEC (Clasificación de Ocupaciones de Costa Rica (COCR-2011) INEC 1. ed. -San José, C.R.…”

Mekanisme dan Strategi Mengurangi Stress pada Pasien Kusta

“…Staf yang terlatih dengan baik, khususnya dalam konseling, dapat menjadi bagian dari solusi untuk menyebarkan pesan-pesan kunci yang lebih efektif tentang kusta kepada pasien. Penggunaan konselor yang berdedikasi, khususnya mantan pasien yang terkena kusta, harus digeneralisasi di luar pusat pelayanan kesehatan khusus (Correia et al, 2019). Berdasarkan pertimbangan yang dibuat, perlunya upaya terorganisir dari semua fasilitas perawatan kesehatan masyarakat, dalam arti bertindak kreatif, partisipatif dan berdialog tentang masalah kusta, memprioritaskan praktik pendidikan sebagai strategi pembangunan yang melibatkan rekonstruksi pengetahuan di antara pengguna, keluarga, komunitas dan profesional kesehatan (Rodrigues, Albino, Parreira, Mendes F R, Cordeiro, & de, Oliveira Adário K D Fernandes, Pimenta E Duarte, 2016).…”