The impact of acute adenolymphangitis in podoconiosis on caregivers: A case study in Wayu Tuka woreda, Oromia, Western Ethiopia. 'If she was healthy, I would be free.'

BACKGROUND: Podoconiosis, also known as mossy foot or endemic non-filarial elephantiasis, is a preventable form of lower-leg lymphoedema caused by prolonged (typically barefoot) exposure to soil derived from volcanic rocks. Acute adenolymphangitis (also called 'acute attack') is a serious complication of podoconiosis resulting in significant symptoms and worsening disability. Despite the well-known morbidity associated with podoconiosis, to date there have been no studies looking at the impact, or burden, of podoconiosis on caregivers. This study explored the experiences and impact of acute attacks on the caregivers of those with podoconiosis in one endemic district of Ethiopia. METHODS/PRINCIPAL FINDINGS: This qualitative study was based in Wayu Tuka woreda (district), Oromia, Western Ethiopia. 27 semi-structured interviews of those with podoconiosis and their caregivers were conducted in June 2018. Here we report the findings from the caregiver's interviews. Data were analysed using NVivo 12. Directed content analysis, a qualitative approach related to thematic analysis, was used to analyse the results. This study highlights a previously unreported impact of acute attacks on the caregivers of those affected by podoconiosis. The findings demonstrate the significant social and financial pressures placed on podoconiosis-affected families which are exacerbated during acute attacks. This study also highlighted the emotional burden experienced by caregivers, the range of care activities placed on them and the limited support available. CONCLUSIONS: This study found a significant impact on the caregivers of those with podoconiosis, especially during acute attacks, in Wayu Tuka woreda. It also highlighted the limited support available to caregivers. Further research is needed to understand whether this impact applies to podoconiosis caregivers across Ethiopia, and beyond, and to establish if there are wider implications of this important consequence of podoconiosis, for example on the economy and caregivers' mental and physical health.

Rapid community identification, pain and distress associated with lymphoedema and adenolymphangitis due to lymphatic filariasis in resource-limited communities of North-eastern Nigeria.

Identification of communities with people that could benefit from adenolymphangitis (ADL) and lymphoedema morbidity management within Lymphatic Filariasis Elimination Programmes (NLFEP) in many African countries is a major challenge to programme managers. Another challenge is advocating for proportionate allocation of funds to alleviating the suffering that afflicted people bear. In this study we developed a rapid qualitative technique of identifying communities where morbidity management programme could be situated and documenting the pain and distress that afflicted persons endure. Estimates given by health personnel and by community resource persons were compared with systematic household surveys for the number of persons with lymphoedema of the lower limb. Communities in Northeastern Nigeria, with the largest number of lymphoedema cases were selected and a study of local knowledge, physical, psychosocial burden and intervention-seeking activities associated with the disease documented using an array of techniques (including household surveys, key informant interviews, group discussions and informal conversations). Health personnel gave a more accurate estimate of the number of lymphoedema patients in their communities than either the community leader or the community directed ivermectin distributor (CDD). Community members with lymphoedema preferred to confide in health personnel from other communities. The people had a well developed local vocabulary for lymphoedema and are well aware of the indigenous transmission theories. Although the people associated the episodic ADL attacks with the rains which were more frequent at that period they did not associate the episodes with gross lymphoedema. There were diverse theories about lymphoedema causation with heredity, accidental stepping on charmed objects and organisms, breaking taboos. The most popular belief about causation, however, is witchcraft (60.9%). The episodic attacks are dreaded by the afflicted, since they are accompanied by severe pain (18%). The emotional trauma included rejection (27.5%) by family, friends and other community members to the extent that divorce and isolation are common. Holistic approach to lymphoedema morbidity management should necessarily be an integral component of the ongoing transmission elimination programme. Any transmission prevention effort that ignores the physical and psychological pain and distress that those already afflicted suffer is unethical and should not be promoted.

Physical and psychosocial burden due to lymphatic filariasis as perceived by patients and medical experts.

Patients with lymphatic filariasis (LF) face considerable physical, psychological and social disabilities. Morbidity management and control are important components of the Global Programme to Eliminate Lymphatic Filariasis. But information on the various disabilities caused by LF is scanty. We measured the severity levels of seven health states of LF in the physical and psychosocial domains of health from the perspective of patients and medical experts, using a 7-domain 5-level (7D5L) descriptive system. Adenolymphangitis had the highest severity levels in all domains of health followed by lymphoedema grade 4 (L4), lymphoedema grade 3 (L3), hydrocele grade 2 (H2), lymphoedema grade 2 (L2), lymphoedema grade1 (L1) and hydrocele grade 1 (H1). People with higher grades of lymphoedema and hydrocele had more severe psychosocial problems than physical ones. Severity levels assessed by medical experts were lower than those reported by sufferers. These findings indicate that LF has considerable impact on the physical, mental and social domains of health. Morbidity management programmes should be broadened to include counselling, rehabilitation and health education to manage the psychosocial problems caused by LF.