Penderita Lepra Dan Peran Perawat Terkait Stigma Pada Penderita Lepra: Studi Fenomenologi

Abstract

Penderita lepra kerap mendapat stigma yang menyebabkan mereka ditolak di tengah masyarakat. Penelitian ini bertujuan menguraikan stigma yang dialami oleh penderita lepra dan usaha perawat dalam memberikan edukasi dan advokasi bagi penderita lepra terkait stigma yang mereka alami. Penelitian ini menggunakan metode penelitian kualitatif dengan pendekatan fenomenologi. Data diperoleh dengan melakukan wawancara mendalam terhadap tujuh perawat dan delapan pasien lepra di Rumah Sakit Donorojo, Jepara, Jawa Tengah. Empat tema yang diperoleh dari penderita lepra, yakni: 1) Respons pasien saat didiagnosis menderita lepra, 2) Sikap dan perlakuan yang dialami penderita lepra, 3) Respons terhadap stigma, dan 4) Pendapat pasien lepra terhadap pelayanan kesehatan. Empat tema yang diperoleh menurut pandangan perawat adalah: 1) Memberikan promosi kesehatan, 2) Mendukung pasien dengan lepra untuk kembali ke lingkungan masyarakat, 3) Meyakinkan masyarakat untuk menerima penderita lepra, dan 4) Memberikan informasi kepada masyarakat tentang penyakit lepra. Berdasarkan hasil penelitian, bentuk stigma yang paling sering dialami oleh pasien adalah penolakan dan pengasingan. Kesimpulan, untuk mengurangi stigma pada pasien lepra, dibutuhkan kerja sama antara perawat, pasien penderita lepra, masyarakat, dan pemerintah (tokoh masyarakat).

Stigma towards leprosy across seven life domains in Indonesia: a qualitative systematic review

“…Issues were experienced with friends, 22 23 neighbours 8 24-26 or others in the hometown. 24 These issues were not limited to adults. 27 28 Enacted, 2 8 9 23-48 anticipated 2 8 9 24 26-28 35 37 44 45 49 50 and internalised stigma 2 8 9 22 23 26-28 33 36 40 43 46 51 were linked to this.…”

“…22 27 28 33 41 43 45 50 These included restrictions on community participation 2 and an absence of invitations to gatherings. 28 40 42 LAPs also experienced expulsion, 47 suggestions to leave the community, 24 gossiping, 28 30 32 verbal mockery 22 27 28 30 31 37 45 48 51 and non-verbal insults such as people covering their noses and spitting when passing the LAP's house. 26 Drivers of these enacted stigma were associated with physical factors, 2 22 25 28 29 37 39 47 51-53 fear of contagion, 25 27 42 46 52 religious or mystical reasons, 26 37 41 46 local connotations of the word 'leprosy' labelling the disease as fatal, ugly, insulting or worthy of ignoring, 40 45 inhabiting the residential area known for leprosy, 38 health worker home visits 8 33 and inadequate social rehabilitation following release from treatment.…”

“…8 Other manifestations were exclusion from family events, 40 expulsion from home, 45 and forms of separation illustrating reduced bodily autonomy such as separate cutlery, beds, clothes 40 45 and houses, 45 54 demands that LAPs to clean their belongings, 40 45 and restricting LAPs from bathing. 27 Enacted stigma in the domestic domain was driven by LAP's physical appearance, 24 28 long-held local connotations about LAPs, 45 concern over blood transmission, 23 ineffective post-treatment rehabilitation for LAPs and their families, 34 45 and community beliefs that leprosy is a curse or sin 24 in turn inducing familial fear of reputational damage due to the presence of the LAP. 45 Anticipated stigma in the domestic domain manifested in fear of avoidance, 23 44 exclusion, 44 negative comments, 2 52 and other reactions.…”

“…34 Married LAPs reported avoidance from a spouse, 24 32 family members' urgings to divorce after diagnoses, 33 45 and an expulsion from parent-in-law. 45 Reasons for this behaviour ranged from beliefs that leprosy is inherited 40 46 47 50 or a curse, 24 to local connotations of leprosy as ugly or insulting disease, 45 to fear of harming familial reputation, 45 46 effort to protect the family name, 46 and concern over contagiousness. 24 29 One study noted that women might face particular problems finding a life partner, due to a stereotype that affected women cannot serve their husband and household optimally.…”