Project Details
The management, prevention and monitoring of (visual) disability in those affected by leprosy in Pakistan.
Description
Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by mycobacterium leprae. Despite being a disease associated with antiquity there are still nearly 200,000 new cases diagnosed every year in more than 120 countries (WHO, 2023). Leprosy causes chronic immune mediated nerve damage (Lockwood & Saunderson, 2012). This can lead to injuries such as cuts and burns due to the lack of sensation. Additionally this nerve damage, when involving the facial nerve can lead to lagophthalmos (an inability of the eyelids to fully close) and corneal anaesthesia (the clear front of the eye becoming unable to sense pain or irritation leading to potentially blinding damage) (Ffytche, 1991; Turkof E et al., 2003). As the damage caused by leprosy is immune mediated it can endure post treatment of the bacterial infection with multi-drug therapy, and in some cases even worsen (Lockwood & Saunderson, 2012; Parikh et al., 2009). This requires long term management and follow up of people affected by leprosy to monitor for potential progressive neurological damage.
One means of mitigating and managing the disability cause by leprosy is self-care. The World Health Organization (WHO) defines, self-care as " the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a healthcare provider."(WHO Regional Office for South East Asia, 2009). Self-care has long been applied to leprosy and endorsed by the WHO as a means to reduce disability in those affected by leprosy (Cross H, 2007). Due to the scarcity of literature examining self-care to reduce visual disability this DrPH programme will dedicate a substantial portion of the research to specifically examine this aspect of self-care.
Objective:
The main aim of this DrPH thesis is to examine the role of self-care in the management, prevention and monitoring of (visual) disability in Pakistan. Specifically, it will seek to explore three main objectives:
Assess globally the evidence in the literature surrounding self-care to manage, monitor and prevent disability for those affected by leprosy – specifically examining what evidence exists for eye-self-care among those affected by leprosy.
Understand the motivations and barriers to the practice of self-care among those affected by leprosy by using the transtheoretical model of behaviour change (Prochaska & Velicer, 1997) – this will take a particular focus on eye-self-care and the beliefs surrounding the visual symptoms of leprosy
Quantify the knowledge about self-care practices among those affected by leprosy and their carers – with a section dedicated to eye and visual symptoms and self-care practices
Methodology:
In order to understand the complex issue of self-care as in intervention to manage, monitor and prevent disability, a multistage approach will be applied. Initially a systematic review of self-care interventions for those affected by leprosy will be conducted to assess the quality of evidence that already exists. In-depth semi structured interviews will then be carried out with those affected by leprosy to gain an insight to the perceived barriers and motivators for self-care. A quantitative study will also be performed in the form of a knowledge, attitudes and perceptions study to quantify the levels of knowledge about self-care in those affected by leprosy.
More information
Cross H. (2007). I can do it myself!: Tips for people affected by leprosy who want to prevent disability. | Infolep. World Health Organisation , Regional Office for South-East Asia. www.leprosy-information.org/resource/i-can-do-it-myself-tips-people-affected-leprosy-who-want-prevent-disability
Ffytche, T. J. (1991). The continuing challenge of ocular leprosy. British Journal of Ophthalmology, 75(2), 123–124. doi.org/10.1136/bjo.75.2.123
Lockwood, D. N., & Saunderson, P. R. (2012). Nerve damage in leprosy: A continuing challenge to scientists, clinicians and service providers. International Health, 4(2), 77–85. doi.org/10.1016/j.inhe.2011.09.006
Parikh, R., Thomas, S., Muliyil, J., Parikh, S., & Thomas, R. (2009). Ocular Manifestation in Treated Multibacillary Hansen’s Disease. Ophthalmology, 116(11), 2051-2057.e1. doi.org/10.1016/j.ophtha.2009.04.021
Prochaska, J. O., & Velicer, W. F. (1997). The transtheoretical model of health behavior change. American Journal of Health Promotion: AJHP, 12(1), 38–48. doi.org/10.4278/0890-1171-12.1.38
Turkof E, Richard B, Assadian O, Khatri B, Knolle E, & Lucas S. (2003). Leprosy affects facial nerves in a scattered distribution from the main trunk to all peripheral branches and neurolysis improves muscle function of the face. The American Journal of Tropical Medicine and Hygiene, 68(1), 81–88.
WHO. (2023, January 27). Leprosy. www.who.int/news-room/fact-sheets/detail/leprosy
WHO Regional Office for South East Asia. (2009). Self-care in the context of primary health care (SEA-HSD-320). Article SEA-HSD-320. iris.who.int/handle/10665/206352