The emerging story of disability associated with lymphatic filariasis: a critical review

Abstract

Globally, 40 million people live with the chronic effects of lymphatic filariasis (LF), making it the second leading cause of disability in the world. Despite this, there is limited research into the experiences of people living with the disease. This review summarises the research on the experiences of people living with LF disability. The review highlights the widespread social stigma and oppressive psychological issues that face most people living with LF-related disability. Physical manifestations of LF make daily activities and participation in community life difficult. The findings confirm the need for the Global Programme to Eliminate Lymphatic Filariasis (GPELF) to support morbidity management activities that address the complex biopsychosocial issues that people living with LF-related disability face.

Figure 1. The International Classification of Functioning, Disability and Health (ICF).

The ICF model presents a social model of health and functioning that is comprised of six inter-related domains: Health Condition, Body Functions and Structures, Activity, Participation, Environmental Factors, and Personal Factors. Health Condition refers to the presence/absence of a disorder or disease. Body Functions and Structure identifies the impact of physical bodily functioning on health. Within this model, health is seen to be not only the absence of a Health Condition, but also the individual's ability to complete daily Activities of necessity and their Participation in important life roles. Health and functioning is influenced by the existence of Environmental Factors (climactic environment, social attitudes, policies, services, etc.) that can be barriers or supports to health and functioning. Personal Factors (poverty, education level, gender, etc.) also influence health and functioning, depending on the environment a person lives within. Health and functioning is seen within this model as being not only an outcome of a health condition, but also of the other five domains that interact. Hence, health and functioning is seen to depend on context (Environment) and Personal Factors as much as the presence of a health condition and impaired body functions and structures. Finally, impairment is seen not only in terms of reduced bodily functions, but also in terms of a person's inability to complete daily activities and/or to participate in important life roles.

Figure 2. The impact of LF: an adapted ICF model.

Figure 2 is an adaptation of the original ICF model outlined in Figure 1. This model shows that the impact of LF is dependent on the interaction of a number of domains within the ICF. The impact of LF is dependent on the impact of the disease on body functions and structures and the level of impairment present. However, the impact of LF is also dependent on the person's environment, which can either facilitate good health (i.e., presence of LF programs within the community) or create a barrier to good health (i.e., the presence of social stigma within the community that prevents people with LF from accessing proper treatment). The impact of LF is seen also in terms of how the disease prevents people from completing daily activities and from participating in major life roles and community events. Finally, LF impact is influenced by personal factors such as poverty, gender, and age. This model shows how these elements (Body Function and Structure, Activity and Participation, Environment and Personal Factors) interact to determine the impact of LF for an individual living with the disease. Hence, LF programs that target solely the body structures and functions level only address one domain and do not respond to other factors that influence the overall impact of LF for a person. Interventions that also address environmental barriers, support re-engagement within daily activities and community participation, and respond to personal needs are theorised to have the greatest impact on the experience of LF for an individual.