Leprosy Resilience with Disabilities Due to Illness: A Qualitative Study

Abstract

Introduction: Leprosy is an infectious disease that still causes complex problems. The problem in question is not only in medical and physical terms, such as disability, but extends to social, economic, and cultural problems. This study aims to explore the experience of leprosy sufferers with disabilities to achieve resilience. Methods: A descriptive qualitative research design with a phenomenological approach was used. The number of participants was eleven people affected by leprosy with grade 1 and 2 disabilities in Sumenep Regency obtained by a purposive sampling technique. Data collection used in-depth interviews with interview guides and field notes; the results of data collection were analyzed with theme analysis. Results: This study produced five main themes about the experience of leprosy patients in the process of achieving resilience, namely: 1) self-stigma as a stressor experienced by lepers, 2) psychosocial problems that arise in response to stressors, 3) active coping as a method of resolving stress, 4) positive adaptation as a form of self-adjustment, 5) characteristics of strong individuals. Conclusion: Lepers with disabilities identify self-stigma as a stressor that triggers the emergence of psychosocial problems. Individuals can form tough characteristics, such as responding positively to unexpected conditions, becoming more productive, and showing helping others behavior after overcoming stressors through the stages of active coping and positive adaptation.

Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

“…All the studies used a qualitative approach or had a clearly reported qualitative component. There were nine studies based on the phenomenological approach [12,19,43,49,56,58,62,80,87], two were ethnographic studies [63,68], two used the grounded theory approach [55,78], and six were mixed methods [14,34,51,53,57,79], but only the India and Indonesia 1 [79] https://doi.org/10.1371/journal.pntd.0010761.t002…”

“…The importance of social differentiation in stigmadepends on interactions between people and their positions within the hierarchies Jatimi A, Yusuf A, Andayani SRD. 2020 [56].…”

“…The social impact consisted of four categories and 74 findings and was meta-aggregated from 38 studies. [12,14,16,18,34,43,45,47,[52][53][54][55][56][57][58][61][62][63][64][65][66][67][69][70][71][72][73][74][75][76][77][78][80][81][82][83][84]87] This synthesised finding captured the interactions and relationships of the leprosy-affected people with others. The included studies showed they were isolated and excluded from society; hence their social problems were multifaceted.…”

“…Category 5: Coping strategies. There were 19 findings extracted from 16 studies [12,14,16,47,[54][55][56]61,62,65,67,76,78,81,82,87] demonstrating the different strategies used to cope with the leprosy burden including concealment of their disease. [14,54,87] The studies showed that patient education is integral to helping them cope and manage their lives.…”

“…[12,55,67,70,76,81,82] One important coping strategy is social coping, when those suffering from leprosy can request support from their families, friends, and community. [16,56,62,69,71,78] Another helpful strategy is to find ways to maintain their emotional wellbeing by changing the way they think about the problems and accepting them [18,78,81,82], turning to their religion and spiritual beliefs to cope with the disease. Other coping strategies would include meaning-focused by gathering information and understanding them or problem-focused when they can ask for help and support from the experts and get treated.…”