نبذة مختصرة : Background Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the ‘Excellence in Disability Prevention Integrated across Neglected Tropical Diseases’ (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care–including physical health, mental health and psychosocial care–within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. Methodology/Principal findings This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January–February 2019 in Awi zone, Ethiopia, in order to assess the draft care package’s feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and “expert patients”. Conclusions/Significance This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.
Author summary Lower limb disorders including lymphoedema are prevalent in Ethiopia as a common endpoint of varying causes such as podoconiosis, leprosy and lymphatic filariasis. This study involved the development of a comprehensive integrated and holistic care package for lower limb disorders into routine health care services. It used interviews and focus groups to assess feasibility, acceptability and appropriateness of the draft care package. We found that persons affected by lower limb disorders had many negative experiences due to their condition, especially related to stigma, that included physical, financial and psychological sequelae. Neglect was paramount, with financial neglect in central budgets, a lack of knowledge by care givers and a lack of awareness among affected persons and their communities, all contributing to inadequate care provision and access. Affected persons, communities and caregivers may benefit from provision of learning opportunities about the prevention and treatment of lower limb disorders; and resources are crucial in engendering change, including material goods, time to provide care, and collaborative work to create a culture shift and address stigma.
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